Please submit your story to me at firstname.lastname@example.org. I'd like to be able to share as many stories and possible with parents that are going through this.
My name is Samantha I was 21 years old when I found out I was pregnant. I was scheduled to find out if I was having a boy or girl at 19wks. My family and I were so excited going to the appointment. As I laid there waiting to find out I was told something was wrong and i started to cry not knowing was wrong I was so scared! After I was told we were having a little girl a doctor came in the room to tell us our daughter had gastroschisis. I was devastated when I found out. Later that day I learned more about it and from that point on I just tried to prepare myself for what was to come. At about 32wks I started being seen twice a week to monitor her weight and make sure nothing had changed. 36wks came fast and that's when I was told she had stopped growing and they would be inducing me within a few days! The induction was scheduled for Tuesday the 22nd and Monday night the contractions started! I was going into labor on my own! I was admitted Tuesday morning and later that night I had my beautiful baby girl McKenna. I was so scared when I stared pushing just thinking about her coming out not being able to breath on her own but that last push I heard her cry and I couldn't help it I started to cry. She was taken to nicu right away were they put the silo on! It was so hard not being able to hold her. Two hours after I had her I was finally able to see her it was the most amazing day of my life! I was told my entire pregnancy that it was just her small intestine that was out but come to find out it was everything and she only weighed 3lb6oz she was to small to have everything put back in so she had to wear the silo for a week until they could perform surgery. I was there everyday by her side up until they took her in to surgery. I waited patiently for them to come Get me after her procedure. After two long hours I was told I could go see her as I walked in and saw her on a breathing ventilator I broke down and started crying I couldn't even be in the room! I knew I had to be strong for her so I went back in to hold her small hand. For days I cried wishing they would take her off the ventilator because she was fine without it but during surgery they had to knock her out and she was just to small so all of her organs were pushing on her lungs making it hard for her to breath. For days I sat there next to her crying then finally they told me it was time to take her off it! I was so excited! I left the room an when I came back in I heard her cry I was so happy she was breathing on her own! For the first time I was able to hold her! I stayed at the hospital with her while my finance her father Cody continued to work so I could take time off to be with her. She slowly started to eat until we hit a speed bump she came down with a life threatening infection! For days we didn't know what was wrong we had to wear yellow gowns to go a near her it was so hard. Finally we got the labs back! she had come down with E.coli. The doctors couldn't explain how she got it but started her on the right medications to get rid of it. Two weeks went by and they stopped the antibiotics and started her feedings again! This was the slowest process because they only gave McKenna small amounts of milk. I was determined to breast feed her one day so for three long months I pumped until the day came when I was told I could try breast feeding! All of that hard work had finally paid off It was amazing! After 73 long days that felt like forever of being in NICU she was finally able to come home! On January 2, 2013 we finally took McKenna home!
I just wanted to share our story because I know how hard it is! So many days I felt like giving up but knew I had to stay strong for her! Although it felt like she was in there forever and her family had to watch her grow through the window for months she is now home and doing great! So to the family's going through something similar to us stay strong because one day you will look back and it will all just be a memory!
I was born with & I am also a SURVIVOR of GASTROSCHISIS & I continue to battle the affects of it to this day!!!
Here is the story my Mom submitted to the Avery's Angels Gastroschisis Awareness Foundation
My daughter was born in 1987. Never had I heard of such a thing as Gastroschisis but soon I would be learning so much. I was told it would be such a simple correction upon birth, a little incision to put stuff where it all was meant to be. However things took a bit of a turn for us. Morgan apparently was quite active and while still growing inside mommy she did her share of turning and twisting which cut off the circulation through the bowel. When Morgan was born our happiness was soon struck down by the news that it wasn't believed that she had everything she needed to survive (a small valve at the beginning of the small intestine). We waited 5 long weeks for Morgan to be strong enough for surgery then we waited hours for the surgeons to meet with us. Little did we know the surgeons would emerge from the room with joyous news! Morgan would be fine, I little bit of battling ahead but she had everything she needed to survive. My baby girl Morgan is now 26 years old and has since had a healthy little boy of her own. We had little battles along the way with scar tissue causing blockages at 12 weeks and 5 years old but since then everything has been wonderful. Morgan's scars are a bit more severe than those I see these days but she wears them with pride. She knows she is my little miracle baby and the light of my life!
A few months after my Mom wrote this around June 1, 2013 I started experiencing complications due to Gastroschisis & was immediately hospitalized discovering that scar tissue had again grown around my intestine causing a blockage along with other forms of damage! After surgery I faced many complications that came along with my recovery! I was in the hospital for 1 month & finished my recovery at home for an additional 30 days! I am fully recovered & all incisions are healed! Doctors warned me that there is no guarantee that this won't happen again due to the fact that they can't control scar tissue growth & now new scar tissue will form due to the recent surgery! Only hopes are that it doesn't re-occur or that if it does hopefully this time they will be able to perform surgery with scopes so that less scar tissue is created & a easier/faster recovery instead of another full abdominal incision!
My reasons for sharing my story are to spread awareness & possibly help or inform others out there battling with Gastroschisis! Today I'm blessed to be healthy and happy and to have such great family & friends for support!
Feel free to messege me or comment with any questions or comments you may have thank you for your time!
Hi my name is ana.I got pregnant at 19 years old and at about 20 weeks I found out that my baby had gastroschisis. I received the call from my ob dr 2 days before mothers day telling me that I had to go see a specialist becase my ultrasound showed that my baby had gastroschisis. I went right away the next day and the diagnosis was confirmed. Right away when the dr said it was gastroschisis my mind went into shock and my husband was the one with all the questions. when we walked out of the office I cried alot I asked my self why? why my baby? why me? But then I looked up information about it and saw the many stories of successfull people that survived this and I decided to enjoy my pregnancy. At first it was hard because the specialist asked me more than one that I still had the option for an abortion but this was never an option for me. I was told my baby had 90% chance to survive and have a normal life and wanted him/ her to have it. I enjoyed my pregnancy I would talk to my baby everytime I had an appointment telling him to grow well so he could accomplish all the things he wanted in his life. I was scheduled to deliver at 38 weeks but before getting there I had to have 2 ultrasounds per week plus another with the specialist and another one once a month at the place where I was going to deliver which was 1 1/2 hours away from where I lived. I was induced on october 7,2012 and my baby was born the next day. He was 6 pounds. I got to see him three hours after delivery and I was shocked. I wasnt expecting to see so much bowel out of his belly. He seemed very fragile and I didnt even want to touch him fearing that I would hurt him but at the same time I wanted to grab him and hold him tight because I didnt get to hold him. It was weird because I didnt feel happy or sad I was just in shock. The days went by and I felt really happy to see my baby progress. I always had in my mind that I couldnt stress my self out because I had to pump my milk and I didnt want to loose it. He dint have any complications and therefor he got out of the hospital a month later which was very exiting. At first it was hard. The first two months were very hard because he couldnt digest his milk so I had to feed him 2 oz of milk every hour and make sure he burped every time. It took him 30-40 min to drink the milk then another 5 to burp so I sleeped 20 min or less and had to feed him again. And even though I was doing this he pstill cried because he couldnt poop and because his belly was big for not digesting the food well.Many times I cried because I was exausted from seeing him suffer, from feeling so tired, for not getting the support that I wanted.
At the third month things started to get better. He digested his milk better. He slept 2 hours between each feeding and I was happy. But at the 5th month I got very depressed I remembered seeing hospital. the fact that I couldnt hold him until he was a week old. The times that I saw a baby in the street while he was in the hospital and I didnt have him. I just broke down. But tjen I talked to my husband and he supported me and helped me throught that hard time. The months went by and things got better and better. He is now a year 2 months and he is a healthy boy. Nobody believes me that he was born with gastroschisis. He is loved by everyone and has no problems with food or regular gallon milk.
To all the moms out there that are going through this I would tell you not to be afraid. Enjoy your pregnancy. Dont question why you and why your baby. I trust God a lot. I stoped asking myself this question becaise only he knows why he picked me to have him. Maybe it was to make me a stronger women and not the weak one that I used to be. Maybe it was to teach me how to be patient with mids because before I couldnt handle one crying. Maybe it was because he knew my husband and I were the right ones to guide him through his life and for our baby boy to teach us some leassons as well. I will never know why me. But what I do know is that I love my little boy and he ha tought me many leassons in life even though he is so small. I am thankful for my husbands support because he was always there
Ive been meaning to write this for a long time now. I found your website the day I found out I was having a baby boy. It was also the day I found out he had gastroschisis. I was 20 weeks pregnant and I was very eager to know the sex of our unborn baby and the ultrasound technician detected something was wrong. My husband owns his own roofing company out here in Vancouver BC and we had gone out of town for business when my doctors office called me to come in for an appt ASAP. I told them that I was unavailable to do so and they put me on hold, my doctor was on the phone within minutes and told us that there was something wrong with the baby's bowels. I had to wait a week before getting in to BC Woman's and Children's hospital here in Vancouver... It was the longest week of my life. When we found out what gastroschisis was we were extremely worried! My husband had to go back out of town to finish the job and I had to stay behind.... That is when I found your website. It helped me to understand a lot and to read the stories of other mothers. I would like to share my story and my sons journey into this world and what he has endured over the past months. I hope it will give other mothers some peace of mind.
I was 21 when we got pregnant. It was an amazing pregnancy! Barely any sickness, some mild headaches but everything seemed to be going as planned. It was a planned pregnancy so I was very cautious about anything that could potentially be harmful to me or baby.... And that goes to show that if something is meant to be it will happen. I believe that my son chose my husband and I to be his parents and I am extremely overjoyed to be his mommy! He was well worth it! After we had found out about his condition I was put on level 3 bedrest. My amniotic fluid had dropped dramatically and I was getting ultrasounds done twice a week and having nurses come to my home to do NST's three times a week. I had to count his movements three times a day everyday and luckily nothing went wrong. The team of doctors were quite concerned with how Chase's bowels looked on ultrasound. They said he had "dilated bowel loops" and they could not tell me how bad it might be. They told me that Chase would most likely be born around 34-35 weeks and be approx 4-5lbs. I made it to 36 weeks. They planned to induce me on the second of april. I went to the hospital for my last scheduled ultrasound on march 28th. Apparently his bowels went from bad to worse in the last week in between ultrasounds and told me I needed an emergency c-section. It just so happens that I went into labor that day anyways. I was three centimetres dilated when he was born. It was the best day of my life!!! Chase weighed in at 7lbs 12oz and 21 inches long! I only got to see him for a few quick moments before they took him into the NICU. He was the most beautiful thing I have ever seen! It was amazing how perfect he looked even with the circumstances. I had to sit in recovery for an hour they told me and Chase was to go for a surgery to get a silo bag put on. I swear I had started to move my feet and legs within 35 minutes, I was determined to see my son again! It was very scary to see him for the second time, he had so many IV's, a replogle tube in his nose, and he was in a plastic bag. But never once did he cry, he was so calm and had an overwhelming peace about him. I only got to see him for maybe a half hour to an hour the next three days because I was in a lot of pain and on a lot of meds. He was born on a thursday night and by saturday evening his bowels had gone back inside of his body. The doctors gave him sunday to rest before doing a primary closure that monday. They wanted to put his intestines back inside his body for about eight weeks to see if they would heal any better. They guesstimated the night he was born that he might have 45cm of "healthy" small bowel but because it was so matted and discoloured they couldn't really tell what was what. Chase healed very quickly after surgery and when he was a week old I finally got to hold him and I cried like a baby. I never thought it would feel so good!!! It felt like I had waited an eternity to hold him. He was so precious! Those eight weeks went by slowly with a lot of unanswered questions from the teams. I was waking up every day at 4:30am getting my husband ready for work and myself ready to go and see Chase and I would sit and hold him all day until about 9:00pm, I just couldn't get enough! The surgeons went back in at the end of May for his last surgery and found that he had about 91cm of small bowel and 10-15 cm of a colon. They gave him a jejunostomy with that surgery which they are planning on reversing between the time he is 12-18 months old. It was a very difficult battle being in the NICU. I thought we would never leave. They told me id be lucky to take Chase home by Christmas time. We finally got to feed our son on Father's day. He was only getting 1cc every four hours which was so sad to see because he was such a hungry guy. I had an amazing primary nurse in the NICU who helped me so much! She was just as big of an advocate for Chase as I was and made sure he had the best of care! (We are still very close) She was like a second mom to him when I couldn't be there, they had an amazing bond from the day they met and still do! Chase went up in feeds very slowly and then back down a lot. It was one step forward two steps back all the time. He finally got up to 30cc an hour and I pushed the doctors to let me take him home, Four months in the NICU was long enough for me! And surprisingly they told me they agreed. We were then transferred upstairs to another ward in Children's. And I moved in with Chase. We got a private room and it was the first time I really felt like I was his mother. I would change him, bath him, give him his meds, feed him and do everything myself. He was also on TPN from the time he was born and has a picc line in his right arm and I pushed to learn as much as possible and took the course so we would be able to take him out on passes. At first we couldn't leave hospital grounds but soon enough we were going out for lunch and walks and to Stanley Park! It turned out to be an amazing summer that we shared. The doctors told me that because I was so eager and had fought to learn as much as I could that they were comfortable letting me take Chase home. And on September 9th we were discharged! It was a very special day for us. I felt like everything had been worth it, all my fight I had in me for my son had finally been worth it and they were letting me take my five month old baby home!!!! It took a very long time for us to get into a routine with all the medical supplies and the deliveries and all of the medications he has to be on. But Chase is now 8 months old and doing extremely well! He is in the 97th percentile and still growing dramatically! He is completely orally fed even though he has a g-tube (we use for his medications) but tolerated feeds well. When I first got to bring him home he was on TPN every night for 12 hours and now he is on TPN only 3 days a week for eight hours at a time and the doctors figure he will come off very quickly. They are so impressed with his success and are wanting to put him as a TPN baby on their posters. He weighs 23 lbs now and wears size 18mo clothes. Chase is a true miracle and I am proud that he is my son!
Our stay in the hospital was so difficult, hard on my relationship with my husband and it got hard to wake up everyday... But Chase kept me going. I used to think "How can I think my life is so bad? Look at my baby! Constantly being poked with needles, not being able to eat, having procedures done every other week.... But still he woke up every single day with a smile! " Chase is a happy baby and he is happy to be alive! He enjoys his life very much even though it is painful and difficult for him... If he can do it, so can I.
I truly hope that Chase's story will help others to see that there is light at the end of the tunnel, even though you may not be able to see it.
Thank you for reading this.
Vanessa Chase and Dan
When I was 19 years I got pregnant with my first child Brayden! At my 20 week routine ultrasound appointment I found out and he would be born with Gastroschisis. My doctor didn't know too much about it so he referred me to Utah Valley Regional Medical center to see a prenatologist! I had ultrasounds and stress tests done monthly from until the last two months when they started doing them weekly to check the bowls and make sure he wasn't stressed at all.
Brayden was born on April 25, 2003 in Salt Lake City, Ut! He was born at 10:07 a.m. He weighed 5 lbs 13 oz and was 18 inches long! Such a perfectly beautiful baby with almost all his intestines outside of his body. They prepared him and life flighted him to Primary Childrens Medical Center. He was prepared soon after with his silo which was hung from the bed holding his bowels which they watched and slowly released more bowel in daily! They said the reason they did it slowly was to not put pressure on his other organs. He was on lots of medications and I was always worried he might have effects from them. One week after birth the intestines were all in and he had his surgery to close and his awesome surgeon Dr. Meyers made him a pretty good bellybutton :) From there it was slow going and changed daily! He looked really bad following surgery and it was so scary to see my tiny boy struggle. It was hard to believe his little body was strong enough for what he was going through! I had lots of faith in prayer and blessings he had received and I knew that he would be okay! Two months later he came home with a feeding tube! That only lasted a week or so and then he was fine to eat on his own!
10 years later I have a healthy happy boy! People are always surprised to hear that he was born with gastroschisis because you would never know besides his scar! He's super smart and healthy and lives for sports! What else could I ask for! I thank my Heavenly Father that he blessed me with him and was with him through his sufferings. I know everyones experiences with gastroschisis are different but we can rely on our Savior and Heavenly Father to help us get through whatever is thrown at us! I will always be grateful for trials in my life that have strengthened me and made me a stronger person!
I'm a swedish 19 years old girl who is born with gastroschisis. ( I really appreciate your website! )
My stomach isn't the most beautiful belly in the world, I have a really big scar so I don't have a bellybutton..
My life has been pretty normal but.. A few years ago it started to hurt like h*ll! And I've been to the doctor but they have no idea what it can be .. But I appreciate every day, and try to smile even the bad days.
If someone having a question about how it is to live with gastroschis just write me a mail and I will try to answer it as good as I can. My e-mail ( email@example.com or on facebook Sara Fredriksson Björk )
Btw sorry for my bad english! I hope you all understand ! ;)
my name is jamie. We have a six week old who came home on june 6th this month. She has been doing so well since surgery with no problems other than my paranoia scaring us all. As of Yesterday she has been screaming and inconsolable,it seems after feedings. She is not vomiting, but spitting up a very small amount, and still pooping, but not as frequently as when she came home. She still is very interested in eating, but she only seems comfy in and upright position after feedings and her feedings seem a bit shorter today. I am calling the ped in the morning , but I wanted your opinion on if this sounds like reflux or obstruction to you? please let me know...I am dreading this weekend if she doesn't seem to be in a better mood or at least not screaming. Even my husband said it sounded louder than usual.....ER or wait until morning?
Hi my name is Cynthia and I have a little boy born with gastroschisis and he 13 months now he still havering trouble eating and drinking any fluids. He weighs about 15 pounds and still has central line and gets tpn and lipids 12 hours a day. Also has a feeding tube through the nose and takes 34cc an hour for 18 hours. I read most of the stories but can't find any of the same complications I'm going through. He's had 3-4 surgeries to repair and many stomach empting test done. Still no good answers and we are not sure when he will be able to get the g tube or j tube or gj tube. He stayed in hospital the first 9 months of his life. Born June 8 2012 came home march 19 2013. Went back in for central line infection may 23 2013 came home june 6 2013 two days befor his 1 year birthday. Is there anyone who went through the same thing?
Hi it's Tiffany I wanted to send a picture also to show everyone how amazing his surgery went and looks like a normal baby( : ..no scars!
Hello my name is Tiffany my son Noah was born with gastroschesis ! I found out when I was 15 weeks pregnant!..then I was about 38 weeks pregnant I was getting a nst done and my baby's heart rate was going up and down ..so right away I had an emergency c section ...the next day my baby Noah had surgery! He did amazing!!!! Everything went good! He went home in 3 weeks!!! He was eating right, urinating ,pooping! He is just like a regular baby!!!and I believe everything happens for a reason! God wants us to change and he pushed me closer to him by going to church!...he answered my prayers!! My baby Noah is a miracle baby! Thanks to The Lord and savior Jesus!! ....my baby is healed not because of luck but because God saw that I changed ...everybody in the hospital told me he is blessed!(':
Hi Lisa! I am the mother of a healthy , happy, precocious three and a half year old gastroschisis survivor ! I found out at about five months pregnant that my baby was a girl and also that she had a really scary birth defect called gastroschisis. I was scared and I was in total shock. I was to be the single mother of a baby with this scary defect and I was told I would have to move to a different city to be monitored and have my precious girl. Before I had to move to a different city , I was able to tour the hospital where I would have miss Lily and where she would be cared for after she was born. I set up three different appointments in one day , one to tour St Joseph's children's hospital , one to meet the doctors who would care for her after birth and finally one to meet a few surgeons from the practice that would be doing a life threatening surgery on my daughter who was 48 hours old at the time. ( You get whoever is on call at the time.) My daughter was born at 37 weeks . We had a short but gruelling and scary 3 week hospital stay . But SHE MADE IT ! She's three and a half , tall for her age and extremely smart. There is HOPE! Pray a lot and believe!
I wish I had found this website earlier :) 22 years ago on Oct. 22,1990 my sweet baby girl was born, Stephanie Brooke. She was a surprise for two reasons, first they told me she was a boy from the ultrasounds and second she had a large gastroschisis. I had three ultrasounds throughout my pregnancy, but they were the very short measure the head and scan over the baby kind. Didn't know what a real ultrasound was until my next baby since they wanted to check him out pretty good. Sometimes OB doctors buy the machines for their offices to do quick scans to confirm due dates, turns out this isn't as good as the full blown ultrasounds. Anyhow, God has reasons for everything :) I went to join my husband on the Orlando Navy base and two days later she was born. Vaginal birth and what a surprise, she wasn't doing well at first, no heart rate or breathing and the poor doctor got a shock with the issues of her gastro. He was wonderful, handled her great, Saran wrapped her belly and got her going again. I was shocked, but beyond excited to finally have my baby girl!! That night said goodbye and they took her to Arnold Palmer Women's and Children's hospital, very excellent place :) the next morning they took her to surgery to put on the silo, for ten days she was on her back, on a ventilator while they put her back together. I remember everything so well, one day we went to see her and they had put soft ties on her feet to keep them own, she was using the silo clamps as foot rests and swinging around :D lol After they removed the silo and closed her up the real waiting began, it takes a bit for everything to settle and the system to start working again (poop) lol. 53 days in the hospital!! I forgot to mention I was blessed to share a room after delivery with the local la leche president person, she was such an encouragement to breast feed ! The doctors said it was a good idea since it was gastric problems, so I got to know my breast pump very well for two months!! This is probably another site, but not being an expert on nursing I weened myself down without understanding, so when she was coming home in two days I had a lot of ramping up to do, lol. When I went to see her to try and nurse the first time the staff said she would have trouble since she hasn't fed in two months. SHe was my easiest breast feeder, no problems and nursed for 11 months!! So all was normal except lots of constipation :( at one we found out she was lactose intolerant, VERY COMMON from what I've heard for gastroschisis babies. Much better once he was off the dairy. At age 7 she had horrible adhesions which took the doctors a bit to discover. They thought it was appendix then found the adhesions and small amout of the silo was left over. However, the first surgeon didn't get them all, so the obstruction remained until we transferred to a different hospital, 5 hours in surgery and only lost a 2 inch of intestinal area :) long healing only due to some hospital mistakes with a central line and a collapsed lung :( poor baby ! It was harder seeing her go through this since she could talk and tell me how she hurt. So all has been well up to a few days ago. She's grown into a beautiful woman, married this last December, her husband is in the navy they are out in CA. The past month or so she has had some lower abd. pains and going through tests to see what's going on. I forgot to mention when she had the obstruction at 7, the only test that confirmed the problem was a very easy ultrasound! After every upper, lower GI and intrusive test known to man, lol. So, I am so glad to find this site and I hope my story helps anyone going through this also :). I will post again once we find out her current condition. Prayers for my girl are appreciated :-) thanks!!!
I'm 30 yr and was born with gastroschisis. Prior to march of this year my life was "normal"- some episodes of really mild depressions becasuse of the lack of belly buttom growing up, and stress to intimacy while being much older. Again, i say prior to march of this year, why? Small bowel resection surgery due to adhesions... constipation is a really common thing in my life but the severe pain i experienced was something else. After investigating a little bit i notice adhesions are common and after a ct at work my small and large intestins were a mess. two days after such "harmless" ct is when my partial obstruction was discovered. Doctors stated it had to be due to the rotation of the intestins due to the contrast in the ct. My surgery went well, no complications thank God, but my old 10 cm scar as been replaced by a new one...again at this point (being married for 3 yrs) dont really matter that much. You learn to appreciate more important things in life other than ones apparence. Well the thing is this after being release from the hospital my gi specialist mentioned with clear doubt that i should maybe consider a life-long change in diet, avoid fivber and gluten products and hydration is really important to prevent another small bowel twisting...Dont know what to do, since my surgeon was not really confident about his own advice, im just afraid of repeating the nightmare of small bowel obstruction. If anybody knows about a proper diet to follow if any please let me know...thanks
My name is Jonathan, I was born in 1986 now 26 years old and was born with gastroschisis, despite being born 3 1/2 months premature at just over a pound I'm doing really good. I have about a 4 inch scar and on my 18th birthday I got a belly button tattooed on where mine should have been. The only real "problems" I have if you can actually call them that are I'm always hungry but don't gain weight which I might add annoys a lot of the people I know, slight damage to my abdominal muscle structure so basically I can never achieve a full 6-8 pack which I really don't care about, other then that and having no belly button I was always an active child played football, soccer, ran track and cross country in school basically led a normal life other then the added attention from not having a belly button, which I think actually heightened my popularity through grade and highschool even on through college. With the advances in science and the medical fields today there, from my understanding, is not much to actually worry about due to early detection more stable care once the child is born and the advances in surgery. I know 2 younger people (one 15 and the other 6) who both are leading normal lives the 15 year old I know won states in wrestling last year so impairment of physical activities is no problem and if to me anyways the scar issue isn't made a big deal of it shouldn't play much if any a part in social advancements in life either.
Thank you for a very good website.
My name is Andreas, I'm from Sweden.
I was born in May 1975 with gastroschisis.
Directly after my birth the doctors took me away from my mother and sent me to a hospital in Gothenburg, 160 km away from where I was born. The nurse come back to my mother and just tell her: "You can have more children in the future" Of course my mother and father was chocked.
Only a couple of month earlier most of the babies with gastroschisis died.
At that time in May, a method to save theese babies had been developed in the US and the Swedish doctors had just started to practice this method. I might be one of the first 100 babies in the world to been treated with this method and survived.
Lucky me, I was strong and survived. After been at the hospital in Gothenburg for 8 weeks I could go home.
Now, almost 38 years later, thinking back how gastroscisis affected me, I can only say one thing.
It has made me a stronger person.
It was not easy to start school knowing that you have a big scar on your stomach, but my parents has always been very supporting. "It's just a scar, nothing else". I had never any physical problems with the gastroschisis, No problems eating, no problems sporting. For me it's just a scar. I have never been ashamed of my scar.
To you all parents who going through this, or if you have gastroschisis. I hope everything goes well and remember: It's just a scar.
My name is Maddy and I'm 17. I was born with gastroschisis. However, my mother did not know that I had this until I was born. I was actually born an entire month early and only weighed a little over 3 pounds. Not only was I born with gastroschisis, but also while I was in the hospital I developed a staph infection and almost lost my life when I was 3 weeks old. The doctors told my parents that I was a miracle baby since I survived and that if I were a boy I would not have survived all of the complications. On top of the staph infection and gastroschisis there was a chance that I could have been mentally challenged. I was able to survive through all of it and I am a perfectly healthy, athletic teenager. I do have a scar for a belly button, but I do not mind it at all. It's actually kind of cool to be different like that. No one ever believes me when I tell them that I don't have a real belly button. Being born with gastroschisis has definitely played a role in who I am today. It has made me appreciate my life and not take so many things for granted. I love your website because I have never met anyone else born with gastroschisis and it's awesome to read everyone's stories. Thank You
Hi, I'm Kayla and my daughter Savannah was born with gastroschisis,
This is my first time telling my story publicly other than friends and family. I found out i was pregnant at about 20 weeks, my periods had been irregular and i kind of had a feeling that i was pregnant but the test results came back negative. i had a cyst on my ovary before so i thought it was just another cyst that was making my period to be irregular again. of course, i was totally wrong. i became very ill January of 2011. i was in so much pain and i could not move. finally i was taken to the hospital and they told me i was 20 weeks pregnant and that i was having a baby girl. i was so dehydrated i had 14 bags of fluids going through me. they finally came to a conclusion of me having kidney failure. kidney failure is scary but having a precious little baby growing inside you while having to deal with all of this is even worse. they told me if i would of waited another day to get to the hospital that i wouldn't be here today. it was going into the evening hours and i was starting to go into a coma, i just remember the doctors telling me "kayla your falling into a deep sleep and your starting to lose your breath you need to breathe." i would then take a few deep breaths and i would hear them tell me over and over "kayla you need to try and stay awake come on you have to breathe.' i was in so much pain all i wanted to do was sleep. my kidneys were producing puss and they didnt see any improvement. i was getting morphine through my iv every six minutes to try and ease the pain but it was still unbearable. they did another ultrasound on the baby and discovered she had gastroschisis, i was terrified since i had ever heard of that before and i only thought of the worse. i had bruises all up and down my arms from the doctors drawing so much blood to run tests. they decided to put a stint in my neck where they can take blood from, enter in nutrients and all of that. i was pretty scared to go through with this procedure but it needed to be done. the stint was placed in my neck and it went down next to my heart. the last thing that i remember is one of the nurses putting a blue paper fabric over my face telling me everything is going to be okay. i was then submitted into the icu. and from then on i dont remember anything. my family told me i was talking to them normally and it seemed like i knew what was going on but i dont remember a thing. through that time i was told i had a leaky heart voule and that it might have to get open heart surgery to fix. fortunately it recovered itself and i didnt have to go through with the surgery. then i was getting fluid in my lungs and it was getting harder for me to breathe, fortunately they fixed that as well. i feel like i seen every doctor in that hospital. there was constantly a doctor in my room checking up on me and the baby. i finally came to my own senses about a week later, and i remember the super bowl being on. everyone was telling me about what all happened and what went on and i was completely shocked and so were they because they thought i was totally conscious. they started to see an improvement and they were having me get up on my feet, and begin walking again. and that was such a struggle. i was feeling a little better since i had been up on my feet. my kidneys were doing good and the doctors were happy with my improvements. i was sent home two weeks later. i didnt really have any other problems with my pregnancy other than that. my due date was june 25th. i had an ultrasound every week within the last three months of my pregnancy. and then within the last month i had to go twice a week. which got to be very tiring for me. i was then scheduled to be induced at 36 weeks, because the blood flow between me and her was irregular and if i wait any longer than there was a chance that she could have been stillborn. my scheduled inducing date was set for june 6th. i got my hospital bag all packed and ready to go and was off to the hospital that night at 8pm. hell started to break loose. they placed strips inside of my cervix to help me dilate, they had to be placed for 6-12 hours before they had to be removed. they took one out and i wasnt dilated at all. they then placed another in and 6-12 hours later i was only dilated one centimeter. put i was in so much pain and i was thinking wow how can i only be one centimeter. they then had trouble keeping the babies heart beat on the monitor. so the placed this metal strip on the babies head to help keep a good watch on it. instead of trying to place another strip in my cervix to help dilate, they decided to put this balloon thing in my cervix and fill it with water to kind of weigh it down and stretch my cervix out. after that i was given an epidural and from then on it was a waiting process. i kept telling my nurse that i think the baby was coming and that it was time. she said no you hardly have any contractions coming up on the moniter lets wait a little bit longer. my anesthesiologist came in to check and make sure that the epidural was working correctly and it was. he heard me telling the nurse that it was about time to push and she just kept denying me and wouldnt even get a doctor to come check and see how dilated i was. the anesthesiologist was like listen i really think its time, i know im not a nurse but from the way it sounds and looks shes ready. after a half hour, i started pushing and little savannah marie was born ON MY BIRTHDAY! she was 6 pounds and 4 ounces and 21 inches long. i saw her for all of five minutes and then she was on her way to childrens hospital. she had surgery and all of her intestines were able to be put back in that same night of her birth. so we were very lucky. she was in the hospital for a little of a month. her recovery was very quick. she started feeding in the hospital after about two weeks. and once they seen her improving alot quicker she was sent home. my baby girl is healthy and perfectly normal and will be two, in a little over four months. she is the smartest little girl. she already knows how to count to five, she knows her colors, she knows my friends and families names, she dances, walks backwards, spins, can kick and throw a ball, jumps, claps. im just so happy with the way she is and she learns more each day. she is full of energy and is a little dare devil. she will repeat everything you say and i mean EVERYTHING. i love her to pieces and thank you for letting me share my story. (:
I came across your website and thought i'd like to share my story with you.
At 19, my fiance and I decided to add to our family. We currently had a 1 year old son. At 12 weeks I found out the baby had gastroschisis. I had never heard of it, understandably I was devasted and cried for days. Over time I became more confident as I become more and more aware about gastroschisis and what to expect after birth. Besides being very small, the baby was going well. At 35 weeks, the doctors became concerned about the dilation of his bowels and becuase the ultrasound had shown that his entire intestine was out and that it was pulling the stomach to the whole as well. So they booked me in for an induction for 36 weeks. The next night howerer, my membranes ruptured and I was taken to hospital where I stayed for two days before they tried to induce me. When they couldn't find his head, they done an ultrasound that showed over night he had turned breach and that the umbillical cord was now at my cervix. Which could be very dangerous if I started to dilate or contract. I was booked in for a C-Section the next afternoon. At 3am I woke up to the rest of my waters gushing and that was followed by contractions. Many doctors come to asses me regularly, but they kept trying to push the c-section until the 1pm booked. At about 8 a doctor came to assess me, he told me everything was fine but they were going to take me in now for a c-section.
In the room, the doctor told another man I was being rushed for a c-section becuase the umbillical cord was presenting (coming out of my cervix). I hated every second of the c-section. At 9:25am my son was born, he exceded the doctors expextions of his weight and was 4lbs 7oz. I'd had steriod injections while in Hospital so he was able to breath on his own. They showed me pictures of him but I didn't seem him for 3 hours.
He had a siloh placed to hold his bowels and this lasted a week. They then put a VAC dressing on the whole, as it was very large and could not be operated on yet. The vac dressing would slowly bring the skin closer together, while still pushing the bowel furthur down into his belly. At 2 weeks old they tried to start him on feeds, but after just a day they took him off becuase he was not tolerating it, and was yet to open his bowels. They done two contrast studies on his bowels and found that there was a blockage, but they were unsure of what size. They operated on him a couple of days after he was 4 weeks. There had been quite a lot of blockage in his bowels, and after a "diffucult surgery" the bowel was looking good. They also closed up his defect while they were in surgery and removed his apendix becuase of the weird place it was in. they told us in 3-4 days, he would be good, his bowels should open and they would start feeds. This was not the case. My son had a very hard time recovering, they kept him sedated and on a lot of morphiene for about 4 days. For days he had a ventilator becuase he could not breath from the pressure of his stomach being closed up. The doctors stopped expecting day to day results and instead looked at the week to week results. Nearly two weeks after his surgery he suprised us all by happily waking up and seemed to be doing good. The took off the ventilator and he had a High Flow air hose realesing more air into his nose but it wasn't breathing for him. They started feeing him, slowly upping the amount. A few days after feeding he finally opened his bowels and since then everything has been great. He is 7 and a half weeks now and the doctors think he should be able to come home in just under a week.
His stomach looks good, and while it was still larger then what it should be, they said that since the belly is soft, he is breathing good for himself, that he will eventually grow into it. I don't think he will have a proper belly button, it is hard to tell. The shape and placement of the scab is odd and it looks too flat to me but I dont mind if he doesnt have one.
I worry alot about another complication happening in the future but I know i have to be thankful about his doing so well now.
My name is Ashley. I am a 22 year old female who was born with Gastroschisis. I am getting ready to graduate with my Baccalaureate in Respiratory Therapy. I wanted to write in because I wanted to let parents know that their child will turn out alright. I recently had a wonderful experience as a Respiratory Student at a hospital when I had the honor of meeting some mothers who had a baby born with this defect. I never really realized that something I have lived with my whole life could impact so many people and families with hope and relief. I wanted to let any parents out there know that their child will be okay. It is my goal to reach out to the parents and children growing up that it will be alright. If any parents or people affected by this disease would like to email me with questions, I would be more than happy to answer them. This is my first time reaching out to multiple people at once, besides at a clinical rotation, so I will try to answer as best and honestly as I can. Thank you for hearing a brief amount of my story and I hope this helps at least one person out there.
I wanted to update you on Alex. He is a year and almost a month and weighs 17 pounds. So far no more surgeries on his stomach and I hope it stays that way. He is a very strong and happy boy. Here are pictures of him from his 1st photo shoot. Talk to you soon
I love your site it really has allot of good information. My name is Brittney i am 22 years old and I am a proud parent of a 10 month old little boy named Carson who was born with gastroscicious. We found out that something was wrong when we found out the sex of the baby they did the ultrasound and sent me to another room before they ever told me the sex of the baby. The doctor came into the room and told me that there was good news and bad and he proceeded to tell me the sex. At that time the doctor had no idea what was going on and he told me the baby had gastroscicious or omphalisis so he referred me to a doctor three hours away from home. I had to wait three weeks before I could know what was wrong with him. Talk about a emotion wreak he had gave me a breif summary of the two but didn't go into detail and told me not to look it up online.
After waiting three weeks I finally found out. I was so nervous because the plan was for me to schedule my delivery and to have him three hours away from home. My pregnancy was really hard I was really sick the entire pregnancy and they told me it was because of the baby's condition.
On the thirteenth of February I called my doctor at home and told them I was having bad labor pains and of corse they told me it was false labor to drink plenty of water and to take Tylenol and lay down. It wouldn't go away I called and called and everytime they told me the same thing. Finally on the fourteenth I went in and sure enough I was in labor. They didn't tell me at first they all just acted very nervous finally they came in and told me I was in labor and they had the rescue squad on the way.
Three hours in the back of the ambulance in labor was not fun at all lol. When we finally made it to the hospital where I was to deliver they came in our room and told us that they were going to try and give me some medicine to stop my labor because I was only 35 weeks. After 10 mins my water broke.
After two hours of pushing my bundle of joy had arrived on feb 15th. After he was born he didn't cry he didn't make any noise I was so scared I kept looking at the doctors and nurses there was about 30 of them in the room someone finally told me he was ok. They finally let me see him for about 2 mins then took him to children's hospital which was across the road from my hospital.
Once my epidural wore off I finally got to go see him. I was a emotional wreck when I seen him hooked to all of thoes monitors and at that time they had him on oxygen as well. Everytime the monitors would go off it would scare me to death.
All of his intestines were healthy and pink except for some at the very top of the silo. It took a week to get them back in and finally the day of surgery came. We were told that Carson would have two surgeries they would cut the intestine and he would have a colostomy bag and then later they would break it down and would place the intestine back together. While waiting nervously for him to come out of surgery his surgeon came out and told us he was able to cut the small part of dead intestine and stitch it back together so we wouldn't have to have another surgery. Once he was out of surgery they told us that Carson would be on a vent for a few days and he came off within 2 hours after surgery.
A week later I finally got to hold him for the first time ever. We spent a month and a half waiting for the repogal to run clear then we finally or to start feeds. We almost got to full feeds then he had a bloody stool. We then had to stop or feeds to figure out the problem they started him on antibiotics and cultured the bloody stool and nothing came back so we had to start our feeds back starting at one mL I finally requested for them to try him on a bottle instead from the NG tube and he did awesome.
He stayed four months in the NICU and I had to stay a block away at the McDonald House it was the longest four months of my life not only was my child in the hospital but I was in a new place by myself and my family was back home. Today he is a normal healthy baby he is still small for his age but he has gained a lot considering he started out at 4 pounds 3 ounces. He does have a small hernia that is closing but we were told in November that his hernia went from the size of a softball to the siZe of a dime and we wouldn't have to have a surgery to close it as long as it continues to heal. Thank you for allowing me to share my story
I have found so much comfort and help in this website. I started searching the Internet to find out all I could about this defect, turns out there is not too much made available. Then I ran into this website and I feel as if it were a godsend. I am currently 19 weeks pregnant, my fiance and I found out at 15 weeks that our baby boy has gastroschisis. We went in for a 3d ultrasound to find out the sex of our baby and the u/s tech didn't mention anything out of the ordinary to us, only that we would be having a baby BOY! We were ecstatic and went home to share the news with our loved ones. About 2 hours later, my doctors office called me with news that the u/s tech saw something she thought could be a tumor on the baby's abdomen wall. We panicked. We were sent to Mercy Children's hospital right away for a diagnostic u/s and found out that it was in fact gastroschisis and not a tumor, thank godness! That was a rough day, I remember not being able to feel greatful for anything, I was scared and nervous, I'd never heard of this before. They had us speak to a counselor and she explained to us that our baby would most likely be born early and that this happens more often then we knew.
Like I said I am now 19 weeks pregnant and we just had our in depth u/s a week ago, to measure baby Dallas' heart, brain ect.. Everything else is perfect. I'm afraid because I still don't know how he will be delivered or when, or if he will be early. I'm afraid to see my baby Hooked up to ventilators and machines, living in the NICU. This is our first child and far from planned. I guess sometimes you just learn to take what god gives you and be greatful for it. I would like to thank everyone that shared their stories on this website, it has given me a better piece of mind knowing we are not alone. My prayers go out to everyone learning that their child has this defect, god bless.
This is our baby 18 weeks 2 days :)
I love your site. I am a proud parent of a 6 year old girl named Hope. She was born 11/15/2006 with gastroschisis. She was born in Dallas TX and was at Children's Medical Center. My husband and I had gone for our first sonogram to determine the sex of the baby, they told us it might be too early to tell but would try and see what the sex was. We were in there way too long for just a routine sonogram. The tech left the room, then another one came in and then left, then they both came in and I knew right then that something was not right. I started crying immediately and stopped listening to everything. They took us into a room and started trying to tell us that they were not able to locate the 3rd ventrical cord and something about organs. Needless to say, by the time we got home I was in tears and thought all my babies organs had developed outside of her body. They sent us to a high-risk specialist a few days later. The LONGEST few days of my life. (at that point) lol
Anyway, they were able to determine the diagnosis and we went through all the same steps you had talked about. The diagnosis, what it meant, what the procedures were going to be etc. We live in Midland Tx so we had to make a trip up to Dallas and to see a Dr. there and go through the sonogram and sit down and tour the childrens NICU. For me, I went through a lot of the same experiences you did as far as emotional and mentally. I thought it was all my fault and was scared that Hope was going to die. When I had been diagnosed I was immediately put on bed rest. They told me to drink a ton of water and only be up 20% of the day. That included going to the bathroom showering etc. The bed rest happened at about 3-4 months so I got to catch up on ALL the movies I hadn't seen. I don't know how many times I watched all the STAR WARS movies!! :) I made it pretty far with Hope and the 1st week of November I started swelling up, I had not gained very much weight at all I just had a big bump so the Dr. was concerned. When I was doing my 2x a week check-ups they noticed that Hope was swallowing the amniotic fluid, but not peeing it out like most babies do. She was spitting it back up. That caused excess fluid and that was starting to agitate the bowel and make it swell. They went ahead and told us it was time, so we went home and got our bags packed and headed to Dallas.
When I made it to September we had our bags packed and ready to go everytime we went to a check up. :) That night when we got there I had been having some pressure in my lower back, I didn't think anything of it, I just didn't sleep that night because I wondered what the next day would hold. We got up and ate breakfast and visited with some family and then we went to Dave & Busters to eat lunch before the Dr. appointment. I love boxing, so ofcourse I was going to play the virtual boxing game!!! (TKO) by the way. During lunch I would feel a random sharp pain go right up my middle area down there, I again, didn't think anything of it. It was my first pregnancy I had no idea. We got to the Dr. she wanted to check me and see what was going on. She came back up and said, well, you are already at a 3 my dear. I said, is that good? She laughed and said have you been feeling any contractions? I said oooooh, that's what the lower back pain and sharp pains were then. :) So, we headed down to labor and delivery and got me all set up to start the iv's and have Hope. I asked her about the epidural and what her opinion was. She told me that due to the high-risk condition an epidural will relax all the stress and let her work her own way out as she feels needed and they would monitor as we went along. So I went to sleep that night, didn't sleep very well the iv meds make you a little loopy. The next morning I was feeling pain and contractions so by noon I was far enough along to get an epidural. I had the same experience you did, bent over, needle, done. However, there was an intern in there who hit the floor and I looked back and said oh she must have looked at the needle! :) I didn't quite get enough epidural because I had one leg that just wouldn't fall asleep. It kept tingling a lot. Around 5 I started to feel a lot of pressure like something was coming in between my legs. I kept buzzing the nurse and telling her you need to get in here and check me.
She kept insisting that she didn't need to for another 2 hours. I made a deal with her and just said come check me and you won't hear a peep out of me for 2 more hours. She came in and put my bed back and came up quick and said boy, she sure has a lot of black hair!!!!! I better get the Dr. in here quick or I am going to have to do this! We were all prepped and ready to go in 10 min. and they asked me if I knew how to push and I said ummm I was on bed rest so I didn't get to take the class! She said ok, it's simple push like you are going to the restroom!!! 3 pushes later she was out at 5:25pm and the nurse said HAPPY BIRTHDAY!!!!!!! I looked up and realized that it was my birthday that day. Nobody realized it because we were all so caught up in everything that was going on. That was the best present I have ever received. I heard Hope cry one time and then I didn't get to hear her cry again for a month. They did wrap her and show her to me I was balling and said Hi Honey, she opened one little eye and I was the only person who knew what color her eyes were for 2 weeks! She was 4lbs 15oz.!!! almost 5lbs.which is a lot better than the Dr. predicted. The NICU team took her away and I started bleeding severely and the Dr. could not figure out why. It was very painful and so they gave me a huge dose of epidural and started to try and find the problem. Things got a little fuzzy after that, but they found the problem and were able to fix it. I got to see Hope before they took her to children's medical and she went into surgery that night to get her pic lines and breathinig tube and ng tube. I was going bonkers, just talking like crazy to pass the time. The nurses gave me a lot of medication that should have knocked me out, but it didn't. I was not supposed to leave the hospital for 3 days. I left the 2nd night because I needed to see my baby. By the way, the name HOPE was picked out before we ever knew anything was wrong. The interesting part about our hospital experience was that they were in the middle of building a NICU so we were on the NEURO ICU floor. We had made great friends with other parents and it was so hard sometimes because you would make friends with a parent who had a child who was dying and mine had a fixable problem. I felt sooo guilty sometimes. It was very hard to get to know them and then wake up the next morning and see the room empty!
Hope had a lot of bowel that was out so it took about 3 weeks to get everything in. Once she was slowly taken off pain medication she started to move around and that's when I heard her cry again. She just did not want that breathing tube or ng tube in her nose. They had the breathing tube to keep the stress off her lungs since they were suppressed by the bowel until it unswelled. She had ripped her pic lines out as well. So it was time for surgery and all went well, we were bathing her and dressing her and taking pictures, but she just didn't seem herself. I told the nurse her fever is at 100. She said, yes, that's totally normal. My husband and I gave it a day and still felt the need to address it with the Dr. she said no worries, we insisted they take blood just to make sure. Sure enough, she had gotten a staff infection from having the surgery. They treated that and then once we were through with recovery it was time for us to be moved to a private room and wait for her to poop. She couldn't be taken off her ng tube having regular milk until they saw that her bowel was working properly. We finally got to come home on CHRISTMAS EVE!!!! We didn't tell any of our family we were coming home, we drove all day and just surprised everyone on CHRISTMAS EVE! Hope has a little line and a little dint for a belly-button. She wears it proudly and is very healthy and completely normal. We are truly truly blessed. I wanted to thank you for what you have done with this website. I have had a lot of trials and I didn't realize that I was post-partum depression and suffered other depression after because I didn't realize I was in that state. I have come out of that and Hope and I are enjoying everyday that God gives us together!!!!! Thank you again, you are truly a blessing and a message to my heart!!!! And so is sweet TY.
Hope and Holly!!!!!!
In 1990 information was limited on gastroschesis to say the least. I am the proud mother of a twenty-two year old son that survived gastroschesis. Looking at your site reminded me the stressors that increased with lack of information regarding the subject. What a wonderful thing you are doing.
My heart breaks for those who are not in place of technology to find information to calm those insecure fears.
Thank you for the blessed site
Hello everyone! My name is Ashley, and I'm 23 years old, like most of you I found out my baby had gastroschisis when I was about 20 weeks pregnant. I had gone for my routine appointment and it was than that the doctor at the fetal assesment unit thought she had seen what looked like gastroschisis, but because of the babys posistion she couldnt be positive so she asked me to come back later that week. It was the longest couple of days, however she seemed pretty positive about it, so in those does I did a little research and prepared myself for the news as best I could. Besideds my baby being diagnosed with gastro, i was going threw such a hard time in my life. My boyfriend and I had just split the day before I got the possible news, My father who had cancer was becomming more ill by the day and I felt so alone and helpless.
The first thing one does when they want to learn about something they have no idea about, is usually the internet, and it can be a good and or scary place! some of the websites I came across and some of the pictures I seen mortified terrifide me,.than I came across this website and see so many wonderful and inspiring stories, it took some of the worry away and hopefully your about to get some relief from my story...
Threw out all my emotional stress after I found out about the gastro, and the other problems I had going on my baby was staying perfectly healthy, there were 0 worries about anything from there on out, the gastrochsis didnt seem to be affecting him one bit he remained a healthy happy and very active baby inside mommys tummy, I had an ultrasound every two weeks up until i was 29 wks, than i had weekly scans.
At 32wks my doctor started to notice the babys bowles begine to dilate, which is something we expected to possibly happen scence bowles are not meant to be exposed to the amniotic fluid..after keeping a close eye on it for two weeks she had made the decision to contact the doctors at the iwk childrens hospital were i was scheduled to be admitted on at 36 weeks to fill them in on what was going on, they decided it was best I go to them for an ultrasound..the Iwk is a 3 hour drive from where i live so i had an appointment for the very next morning, they confirmed the dilated bowles and told me it was best i stay i was 34 weeks at this time and was admitted and slowly induced 5 days later, they gave me what is called cervidil to induce labour and continued to keep a close eye on baby and me, about 24 hours after they started the cervidil i started to feel small contractions, we had an ultrasound and the baby didnt score so well, he wasnt being active at all, so they sent me right down to labour and delivery and got the show started, and 16 hours later at 35wks3/5 days 7:13amI had vaginally given birth to my baby boy weighing 4 pounds 15 ounces! the neonatle team took him immidatley to the counters and cleaned him up and wrapped up his bowel about 5 mins later i got to quickly hold him before they took him off to the nicu, once they got me out of bed and showerd and settled in my new room they took me and his dad down to the nicu to see him, he had surgury the same day and they were able to place all his bowles back in one surgury! and as for the scar...what scar? its no longer than my pinky nail and wider a peice of string! the job they did was unbeliveable! it turned out that even though his bowles were dialted inside the womb, they came out perfectly fine and healthy! his dad and i got to hold him the next day and have been able to hold him everyday for hours sence. the wires are deffinitly not fun! they had his suction tube going threw his nose that is sucking out the bile that the bowles wont pass... they had that one for about 10 days before they switched it to low suction, which is a much smaller tube and easier to get around! they gave him his first bath on day 12! and on day 19 just yesterday! he had his first taste of real milk! 4mls every 3 hours! its been a long 20 daysbut the worst part is over and were just a couple of weeks away from being able to take ben home :) id like to think my father has been watching over him giving him the strength he needs! because he is doing wonderful! i never imagined things would go this smoothly, i love you ben! i love you dad! rest in peace, you wouldnt have been the worlds best grampy.
I am 20 years old and found out when I was 10 weeks pregnant that my baby had gastroschisis, they found this a lot earlier than most and because of that I was lucky enough to have extra care throughout the entire pregnancy, I found your website when I got home from the ultrasound apt and it helped my boyfriend and I cope so much. My baby boy is now 11 days old and in the NICU. Jayden was born at 37 weeks vaginally, he was 6lbs 8oz. Jayden was only a day old when they put his bowels into a silo, along with an IV in his head, a PIC line in his arm, an OG tube into his stomach and all the other moniters to measure heartrate and so on... I was not able to see him for 24 hours after birth because I was at a different hospital and he had be transported to a Children's hospital next door. When I finally got to see him the surgeons had already managed to fit all of the bowel back into his little body with no complications. later that day they moved us into a private room and took the IV out of his head, Jayden was doing so wonderfully. Right now he just has his OG tube suctioning out the bile, which is getting clearer everyday and his PIC line. He is sleeping most of the time but wakes long enough to cry in hunger. The wonderful nurses let me hold him as long as I watch his cords and change him whenever he needs. He gets nyastatin an oral suppressant all the time to help satisfy his swallowing urge and want for food. He has been doing so good it is a miracle in itself, Ive read these posts and was expecting his bowel to take a long time to go back in and so on, but he got them all back in in a day and is so close to being able to eat. Im so glad for your post in preparing me and for my little miracle.
I was watching a medical show on television that made reference to gastroschisis and it brought me back to the day, almost 17 years ago, that I first learned what it was. Throughout the years, I have occasionally done searches on the internet to find out if there was any new information out there and I stumbled onto your site today. I want to applaud you for taking the time to create this site. I believe it would have been very helpful to have had some type of reference when I was dealing with it all those years ago.
My story starts October 1, 1995, the day I gave birth to my wonderful son, Shelton. I had a pretty rough pregnancy, with severe morning (all day) sickness the entire nine months. Other than that, I thought I was having a healthy baby boy. His condition was not detected on the sonogram I had done at 27 weeks. Within 30 seconds of his birth there were about 15 doctors and nurses storming into the delivery room to whisk my son away. He was born at 5:47 p.m., and by 6:30 p.m. I had been told about his condition, wheeled into the NICU with the hospital chaplain to see him and pray, and then he was wheeled into surgery. Luckily, they were able to take care of everything in one surgery. He spent 32 days in the NICU before he got to come home.
Fast forward 17 years and he is a happy, healthy, active teenage boy. He has participated in sports since he was 4 years old, climbed trees, brought home snakes and frogs, and all the other things healthy boys do. He did struggle with people seeing his stomach when he was younger (kids are very blunt when somebody is different than them), but we have always encouraged him to embrace his belly button as part of who he is and the journey he has been on. He is now self-confident, participating in football, wrestling, and weight-lifting, and suffers no side effects from being born with gastroschisis.
Prayers for all, and for those who have yet to go through the journey, hang in there and be strong!
I found your site so perfect for perfect for anyone wanting to know more about Gastroschisis! My name is Aysha Ostovich, an 18 year old girl born with Gastroschisis. My mom would often tell me everything she experienced with me while i was in the hospital, and even after 10000 times I still enjoy hearing about it. The main thing they were cconcerned with for me was that I would not be able to keep any food/nutrition inside so they put me on a special medication. I was in the hospital for about 3 months and my condition wasn't getting any better. My mom finally told the doctor to let her take me home and that she could prove that that was all I needed. And low and behold she was right. I held in more and more food as time went on. They still had me on special diets which wasn't doing much for me. Instead of the medecine after awhile she switched me to just regular formula. again, a MIRACLE I ate it all and kept it down and started gaining weight. If she had not switched to new food however, doctors never would have figured out I don't have a "full tummy shut off switch" as my mom calls it :) They had to train my stomach to eat the correct amounts so i wouldnt eat so much and have my stomach rupture. As for my scar. I ROCK my scar. I've never been ashamed of it. People stare all the time but its just awkward for them. I always just tell them to ask. It's nothing to be awkward about. Every scar has a story. Why not share? Since I was little my mom was putting me in little bikinis. She wanted me to grow up accepting everything about myself. And it worked. Almost always when I meet people I'll try and steer a conversation to scars so i can lift up my shirt and flaunt mine. (I'm sad I know). Anyways. From spending 3 months in a hospital as a newborn, to an 18 year old college girl (who loves her food and to play sports and well do everything like any other girl my age) I'd say my disease has had no effect thus far on my future endevours. Except for the fact its inspired me to become a Neo Natal nurse :D
My name is Daniel Shafer, I'm 35 years old. I was born in Louisville General Hospital and one of the first recorded cases at the time of this type of disease/birth defect. In shock of the problem, I was laid on my mothers stomach and the staff ran out of the room. My level of Gastroschisis was considered very severe. In an effort not to spare expecting mothers I will spare you the details unless you request them directly. The importance in me telling you this is for several reasons. During my growth I was told for many years they didn't know how healthy or long I would make it. Well here I am, stronger then most I know at my age and in better condition. They only mistake made was little effort in how they would place the care of my organs back into my stomach. Now on June 20th 2012 after having severe pains in my stomach for several years they have found I now have adhesions "Scare tissue" blocking my intestines, and what is considered a Mal-rotation of the colon. After many intestinal doctors have seen me and I have had a total of more then 6 CT scan's my surgeon openly admitted that the scan is the best medicine has today, however it still only shows the caliber "thickness" of something in the picture. Meaning until they get into my stomach they can't be 100% sure of the corrections needed. In short, this is after 35yrs the first surgery I have had a need to take place and have had a happy healthy life since. So don't be discouraged and handle your child with mittens. Let him go out and play, they can and will live. Just make sure your doctor is prepared to treat the baby for both the short term, and long term potential problems. Wish you all well.
Hi, my name is Alexis I had my daughter when I was 17 years old. I did the normal test you do while pregnant everything came back fine, then it was time for the afp test I wasn't worried I just thought oh everything's going to be fine nothing is going to be wrong with my baby. A week later the day i was going to find out wether or not i was having a girl or boy I got a phone call it was my doctor " something came back abnormal on your test we think your baby has spina bifida . I remember just being in shock not knowing what was going to happen. I went and had my ultrasound to see the sex of the baby the nurse doing the ultrasound just keep focusing on my babies tummy "he said the spin look fine but you need to go to your doctors office immediately I'm faxing over a report right now" i was so confused not knowing what was wrong what to do the drive to the doctors office was one of the longest car rides in my life. I walk in the office my doctor was waiting for me she said " your baby has omphalocele and will need surgery we are sending you to do a level two ultrasound." I remember jut being numb. The appt. for the level two ultrasound couldn't come fast enough. The ultrasound nurse smiled and said your baby doesn't have spina bifida omphalocele your baby has gastroschisis I went to genetic counseling, I decide not to do the amino I was scared of having a miscarriage.i had my daughter in a different city at a big children's hospital. I was induced at 37 weeks and through c-section had a beautiful baby girl. Her small intestines and large intestines along with her stomach where all coming out through the whole in her belly. Her doctors put it all in a silo every day little by little it all went back in it took a total of six days. Then the most amazing thing happened they covered the whole with gaze and the skin grow all by its self. She started drinking my milk little by little until she was able to handle it and after six weeks we were able to go home. Thank goodness for the Ronald's McDonald house for giving me a place to live while my daughter was in the hospital. She is now 3 1/2 years old and healthy as can be we haven't had any problems since we came home from the hospital she is a healthy little girl and other then the fact her belly button is a little different you could never tell she ever had gastroschisis. Yes gastroschisis is a scary thing to hear your unborn baby has but with faith and love you can get through it.
I have been looking for some advice and other peoples stories to help me cope with whats going on with my pregnancy because i am to pregnant with a baby who has gastroschisis. I am currently 21 years old and on April 28th i went to my normal doctors appt and got my blood work done that would test my baby for any type of birth defects, not expecting a call back, two days later while i was at work i recieved a call from my doctors stating my levels came back high. I broke down into tears, and what hurt the most was thats all the info i recieved, just that something wasn't right with my blood work. Well three days later i went for my 20 week check up to find out if my little bundle of joy was a boy or girl and instead of being overly excited i was more dreading the appt because this would be the time when we would find out whats wrong with our child. Unfortunatly the sono tech couldnt answer any of our questions but after my sono appt my ob had called me giving me the news that my baby girl had gastroschisis. She informed me this is highly common in young mothers and for me not to stress, that i will be well taken care of during my pregnancy and so will my little girl. I am currently at 25 weeks and i go to my 2nd John Hopkins appt on thursday. I was informed at my last visit there about a month ago that once i hit 29 weeks i will be going up there twice a week to makesure everything is going good and that i should plan on delivering normally unless something were to go wrong. So far my sono's have showed that everything looks good but in all honesty i dont think there really is a way to prepare myself for whats ahead, its one of those things where you can only pray for the best but prepare for the worst, but these other stories that i have been reading on this website def give me a peaceful mind set that i am not in this alone and that there have been babies born with this that have turned out to be perfect. I can only pray that my little princess kaylee jade gets through this with flying colors like some of the other babies in these stories!
St. Marys, MD
My name is Petra and I'm 27 years old. After two miscarriages in 2011 this is my third pregnancy now. I found out my baby boy had gastroschisis when I was 12 weeks pregnant. That was almost 2 months ago - now I'm in the 19th week of pregnancy. After receiving the baby's diagnosis, my husband and I were confused and we cried for a few weeks. We didn't know what to do and what to expect. Although the defect was discovered in a very early stage of pregnancy we decided to continue the pregnancy. The major credit goes to you and your amazing web site and also to several gynecologists, a geneticist and an abdominal surgeon we had talked to up to now. You have provided me with all important information and calm me down in this difficult situation. Now I'm trying to relax and enjoy the pregnancy and all I can do now is hope things will turn out wel.
Petra (Slovenia, Europe)
Hello. My name is James Gorecki and I am writing you to thank you for sharing your story with the world. Last June, my wife and I were informed that our daughter, Emilia, had gastroschisis. We had absolutely no idea what this condition was and how to move forward. We did our best, and upon our research we found your blog. We cannot express to you how helpful and supportive we found your story. Moving forward, we found the best doctor we could to deliver Emilia, as well as the best team of surgeons to take care of her after delivery. Emilia was born dec 9th, 2011. As we know, the recovery process is a long and drawn out process. Everytime we felt down though we'd touch back on the courage and strength your son and family showed and it really helped soo much.
Our Emilia was a trooper, and despite leaving the hospital with an ostomy due to some damage to her bowel from the amniotic fluid, she was out in 6 weeks. After 2 weeks she went back in because her stoma prolapsed. The surgeons reconnected her but it only worked temporarily. They than reset another stoma. Sounds like alot, and it kinda was but through all this she only spent 9 weeks in the hospital and never had an issue with oral oversion, and all in all is such a beautiful, happy, and bright little girl. I tend to believe her strength is enrooted in the motivation and happiness your son Ty showed. Id tell her about him in hopes shed understand that everything she was dealing with was temporary and that she would make it through okay.
Again, my family thanks you so much. We cant put into words how appreciate of your site we are and Im sure you will continue to help others the way you did us.
I was 16 weeks when I found out my baby had gastroschisis. I have a two year old little girl. I had no complications and had her a week late at 8 lbs. I thought this pregnancy would be just as easy as my last. During the ultrasound to determine the baby's sex the tech told me I would have to meet with the doctor for a triple screening test blah blah. I was like, 'we have to do that today?' when i saw the doctor she asked who came with me and if I would like to call my husband back to go over what they found. With Lydia they said, "Yep it's a girl. See you in a month" so I knew something was up. After explaining about Gastroschisis, what she called the 'definite' she told me our baby girl had cysts on her brain and possibly a clubbed foot, though those may not be on the more in depth ultrasound. My husband and I both cried that day with our two year old saying, 'It's Alright.. It be OK mommy" I know it was hard on her to see us upset so we did our best to hold it together. Three weeks later no club foot, but the cysts were still present as was a bright spot on her heart what they called 'soft markers' for genetic disorders. I was so overwhelmed and disappointed I could not take my baby home right away and swept the other under the rug thinking they wouldn't be on the next ultrasound.
When they were and the doc asked if I wanted to test my amnio fluid to check for common disorders I concented. A week later when I got the results that she did not have those disorders I was extremely relieved. Last visit I was told the cysts have closed up and the bright spot is no longer present. Hearing those things, reading your testimony and many others has really put this in perspective for me. It is not the end of the world for me or her. This will not cause me to miscarry and she will be a healthy happy child with nothing but a scar to distinguish her from other babies.
Like Madison Newman my original duedate was June 12 2012, then changed to June 19th cause she was measuring small. But from what I've read it is clear she may not make it that far. I will be updating this with details of our stay at the hospital as I found that especially comforting and informative. I wish all couples going through this a speedy recovery for their babies and an otherwise healthy pregnancy.
My name is Shayla I'm 21years old and am 26 weeks right now with my beautiful baby girl nevaeh i found out she had gastroschisis when i was 20weeks pregnant i was scared and upset i did not know what gastroschisis was or if i did something wrong or if my baby was gonna die i was a mess to say the least after talking with our doctor and a parinaytoligest i felt a lil at ease and the more IV asked about it to family and friends the more common it is witch was a relief. I wanted you to know you and everyone on your sight has helped me i will try to post pix after shes born the pix people posted were a big help for me as well. Im glad Tyler is doing okay best wishes to you parents with a gastroschisis baby and all my prayers go out to your strong lil loves!
Hi Lisa I wrote to you a while back, Oct of 2009 to be specific. My name is Jocelyn and my daughter [Leeany Cryatal Modesto] was born with gastroschisis. My husband and I are very thankful with your site because it helped us a whole bunch To understand what was going to happen next with my daughters development. Well here's a picture of my daughter when she was born. She is now 2years old and a very healthy baby. Thank you very much!! <3
I am Ashley and my daughter Mattie Oriann Patek was born on September 8, 2005 with Gastroschisis. I was 34 weeks and 5 days along when an emergency c-section was needed due to low amniotic fluid. She went into surgery immediately and everything was accomplished in one surgery that lasted about 3 hours. She was in the hospital about 2 1/2 weeks. For a child with Gastroschisis things went abnormally smoothly. She was my first child as well. I too had decided I did not want any more children due to fear of more complications and the stress of a baby. BUT, God didn't see it that way on March 2, 2012 our 2nd daughter, Marley Raylann Patek, will be one. She had a very easy pregnancy besides gestational diabetes. I got fixed after her :) A lot of my feelings through Mattie's Gastroschisis are the same as yours appear in your information. I was always researching and asking questions non stop. Mattie is healthy now except that her bowels have rotated and need to be watched in case of blockage and possible surgery to fix that. But it is not a serious issue we worry with because we have a great pediatrician that walks us along. Oddly enough I had no depression at all with Mattie. I was just so thankful to have a baby that survived so much. I was also talking to nurses and doctors all the time. Our families wanted to help so much more because of all the health issues. Once I had my 2nd daughter, who was healthy, I became very depressed. It was as if the world felt that I had no need for help because I had been through worse. I should be grateful for a healthy baby, and I am, but I didn't have a clue as to what I do with an infant and a 5 year old. I wasn't prepared for the normality of it all. I felt awful for not knowing what to do with a "normal" baby. It all sounds odd, but for me I wasn't used to being alone and no one walking me through everything step like they all did with Mattie. As I said it has been a year almost and things have all worked out for the better now, but it took some adjusting to. In all honesty I forget Mattie was born with a birth defect until someone reminds me or I am talking about her as a baby. She is a 6 year old, hyper, chatty, Hello Kitty freak, and Justin Bieber fan. She plays soccer and of course her daddy is the coach and she appears to be perfect, and in our eyes she is. I tell her all the time that she has the best belly botton in the world. Our daughter Marley has an outtie belly botton and I believe God did that so our daughters have something in common. I really like what you have done with your web site. Wish it was there when I had Mattie.
My name is Danielle. I wrote to you a while ago. I wanted to give you an update on what happened since the last time I emailed you. Alexander Nicholas was born with gastroschisis on December 8th, 2011 weighing 4 pounds 11 ounces and 17 3/4 inches long at Westchester Medical. He was born at 37 weeks. I was at work that day and all morning I was feeling pressure going down on my legs. I went on break and when I came back I had a mucusy discharge so my mom called the hospital and they told us to go there. We got there at around 1 and I was in so much pain. I just wanted it to be over with. I did it naturally with no pain medicine or anything. Baby Alex was born at 5:11 pm and was taken right away. They showed me him for a quick second. Then the journey began. They put a silo on the intestines so it would keep moist. I wasnt able to see him until later that night. Before I saw him, the pediatric surgeon said he was doing fine but his anus was small so they had to dilate. He needed an iv in his head and was on a breathing tube and a rebugle. A rebugle is a tube that sucks up all the bad stuff in his stomach. He wasn't able to eat until the intestines were working and he was pooping on his own. He only had the iv in his head for a day n then they put it in his arm. He was on TPN. They gradually put the intestines back in by pressure and pushing a little at a time back in. When he was 6 days old, he had his first surgery to put the rest back in and close it up. It took about a hour for the surgery. The pediatric surgeon told us that he did very well and we had to wait for it to heal and the intestines to wake up. On Dec. 16th, I was able to hold him for the first time and he had the breathing tube taken out. He was also on oxygen for a day. I was so happy that I was able to hold him. My friend was with me when I got to hold him. On Dec. 18th, daddy was able to hold him and on Dec. 22nd grandma got to hold him. They were both very happy. On Dec. 23rd, they took out the rebugle and he had his first feeding of pedialyte. They had to put it back in the next day because he threw up. It was a start and stop process with the feeding. I was very disappointed and very emotional on Christmas Eve. My cousin's sister in law just had twins in August and I was getting very upset because Alex should have been with us. We also went to my boyfriend's friend's house and I couldn't pull myself together. My brother came home for new years and was able to meet him on Dec. 27th, On Jan. 2nd, they tried feeding him again and had to stop because he threw up. On Jan. 4th, they started giving him suppositories so his anus will open up and get bigger. They did it twice a day. On Jan. 5th, my dad held him for the first time and after we left, they gave him my breast milk and he did fine. They didnt have to stop after that. They started at 5 ccs and gradually went up. I was so happy when my boyfriend told me that they started him on my breast milk. On Jan. 11th, he was 5 pounds 15 ounces and got moved to special care. This was the last step before he got to go home. The next day the nurse told me that he was going home Monday or Tuesday. I was very happy and nervous at the same time. On Jan, 14th they took the iv out and stopped dilating but they still had to give him the suppositories. We spent all day getting his room ready. Finally, on Jan. 17th, Alex was able to come home and was getting 2 ounces of milk every 2-3 hours. He was 6 pounds 1. 4 ounces when he left the hospital. He epent almost 6 weeks in NICU. Throughout the 6 weeks, I hated leaving the hospital without him. It was very hard for me and my boyfriend. We went there every day. He is doing very well now. We still have to give him the suppositories. On Feb. 6th, he weighed 7 pounds, 7 ounces, 20 inches long and had his first shots. He did very well. He only cried for a second. I put some pictures of him up. I want to let all the parents know who are going through this to have patience. Your son or daughter will do fine. Hope to hear from you soon.
My name is Madison Newman, I am 20 years old and am pregnant with my first child, a baby girl. My boyfriend and I found out she has gastroschisis at 17 weeks. My father is an OBGYN in my home town Scottsdale, AZ. Since my boyfriend and I are still in school we went back home the week after New Years to find out the sex of our wonderful baby. I went from an excited mother-to-be to an emotional mess as soon as the ultrasound tech pointed it out. She had only said something because she knew my father. My mother also happens to be in the medical field, she's a nurse in the NICU at Phoenix Children's Hospital. I know right, how lucky could I be? Two parents in the medical field with tons of experience with gastroschisis babies and every other complication under the sun (particularly my mom). But nothing they said could comfort me, I'm sure a lot of moms have felt the way that I did for a couple weeks; my world had crumbled, my sweet baby girl was already going to have problems right out of the womb! Mostly I was scared, so scared that there was nothing I can do for my baby. I found that staying busy is key and learning about what I'm going to face...your website and the stories of these other moms has been a great comfort to me. I cried when I read your story, mostly because it reminds me so much of myself. Thank you for your words and pictures, they really have helped me to look at the big picture and to see that, although things wont be easy, my daughter can and will live a healthy and happy life even with gastroschisis.
I am due on June 12, 2012 but I assume she will arrive a couple weeks early. I am hoping for the best with this new bundle of joy, and will have to send you a picture of my baby girl once she has made her recovery and has made it home.
Hi my name is Kourtney. I was 21 when I got pregnant, 22 when I had my son Evan. I found out my son had gastroschisis when I was 17 weeks pregnant. I was at home when I got the call from my doctor telling me that the test they did for checking for spina bifida & down syndrome, came back a higher number (something was wrong with my baby). I was so worried & afraid, that my nurse said I could come in that same day for an ultra sound so I could have some peace of mind. When I got there they did the ultra sound to look at his spine & everything looked great. They looked for awhile longer just to make sure everything was okay, spin was good but then found out why my test came back a high number. On top of finding out that day I was having a boy, he also had a birth defect. They told me what it looks like is gastroschisis & not omphalocele. I had no idea what it was until they told me, I had never heard of gastroschisis. They explained to me what it was & said they don't know why this happens. When I got home I had to break the devastating news to my boyfriend about our unborn child, we both broke down & cried. They referred me to another clinic where I had a 2d level ultra sound done & confirmed that my son did have gastroschisis. It was not long after I found out that he had this birth defect that my boyfriends mom came across your website & told me I should check it out & I did. I had read everyone's stories! Not only did I learn a lot about this birth defect but I also wanted to prepare myself for what could happen. I spent my whole pregnancy terrified that something could go wrong any day but nothing did. I started having contractions when I was 34 weeks pregnant that were coming every 3-5 minutes & they continued like that for awhile. I had went into the hospital but the contractions slowed down, so they sent me home. It was in that same week I started having them again but closer together this time so I went back in & they had me stay over night but sent me home that next morning. It was only a day or two later that I started having them come a lot more frequent again & more painful. I knew something wasn't right & I remember feeling like this is it & I was right. I was dilated to a 3-4 & was admitted into the hospital that night. That next morning they broke my water & within 2 1/2 hours I was in labor & gave birth. He was born 4 1/2 weeks early, weighting 5 pounds 7 ounces. All of his intestines were outside of his abdomen & part of his stomach. I was so happy to finally be able to see my son I was waiting for months to meet, I cried when I saw him & wanting to be able to hold him but I couldn't. I only got to see my son for a short period of time before they took him away. He was brought to the NICU where they put a silo on, put an Iv in his arm & in his head for pain medication & a tube down his throat to suck the stomach acid out. It broke my heart to see my son in the condition he was in. After a week of him being born he was ready for surgery, it was a success. After that he went back the NICU for a few days to recover, then got moved to the ICC where he would spend the remainder of his time in the hospital. Shortly after that the doctor said he could start eating, they started him on 5cc's. From there he advanced in his feedings, gained weight & was able to come home after 3 1/2 weeks after being born & has been home since. All the nurses & the doctors were so impressed with how good he did & said that most babies with this birth defect usually have a set back on something but he didn't. He was a fighter & never gave up! Before he was 2 months old he was able to roll over all on his own, hold his head up & has unbelievably strong legs & arms. They say babies with this birth defect don't grow as fast as other kids & will be behind them but he is trucking right along. He is now 3 months old & is a very healthy, strong boy & hasn't had any problems. Everyday when I look at him I thank god for blessing me with my beautiful baby boy! He's my hero!! It is a hard thing to go through seeing your child go through this but to all the mothers out there that are going through this right now stay positive & be strong. Even though you can't do much for them just being there for them & believing that everything will be okay is enough.
This is an update our story was posted 7/30/2010 under LeeAnn Vest:
Tyson is going on 14 months. Happy healthy boy who has had no complications or other surgies after closure. We need to feed him pediasure shakes for the extra calories for weight gain. I want to show mothers out there, there is a bright side to this diagnosis. Please find updated pictures! We just found out we are expecting a new addition on Sweetest Day, it is a healthy baby. So for families who worry about this a second time around, can breathe and relax. :)
my name is Brittany, and i am 19 years old. i just gave birth to my beautiful daughter Jaylynn sky on September 27th 2011. she was born with gastroschisis also. i found out when i was 20 weeks that she had the defect, and my world was crushed. i cried for weeks, and was very very confused. the doctors discussed termination, but that wasn't an option in my eyes. Jaylynn came at 36 weeks, and weighed 6 pounds even. Soon after birth, she was transfered to Childrens Healthcare of Atlanta, and the doctors began surgery. she was in the hospital for two weeks and 3 days, and for that i am very thankful for. it was heart breaking to see my daughter like that, and i couldn't stand to have to leave her... she is now home, and healthy. thank the lord. but recently, i have had a concern that maybe other gastro parents out there could help me with. her incision had recently become red, and almost moist looking, as if it were leaking or draining... and this worries me, i am taking her to the doctor tomorrow of course, but i am terrified she might have an infection of some sort, and being as young as i am, and this being my first baby, i am always scared that something is wrong. i wish the best for all of you mothers out there! just know that there is hope, and god does work in mysterious ways. it is a tough road ahead, but it is so worth every tear, worry, and prayer to have your darling baby home safe and sound. you all will be in my prayers and i wish the best for all of you!
My daughter isabella was born with gastroschisis we found out when I was about 19 wks .she was born on may 24 2011 at nortons health care in louisville ky immediatly after delivery.she was taken to kosairs childrens hospital across the ped way her defect was no bigger than a fingertip but air got in the intestine and ballooned it out cutting off circulation resulting in death of the bowel. The day she was born she had surgery and had to have an illiostomy her ostomy prolapsed 4 inches at one month old and she had emergency surgery...a month later they reconnected her intestines. She is now home but with a central line for tpn and lipids she has very poor obsorbtion she is 4 and 1/2 months old and weighs only 10 lbs and 7 oz. she lost a very important piece of her bowel called the iliosicle valve so she will always have diareah and be in diapers for a very long time she is still on limited feeds and we are in the hospital with her about every other week...i was glad to find your site and read others stories we were in the nicu for 2 and 1/2 months and didnt meet anyone with a child with this defect...
My names Lindsey. i have a 7 month old daughter who was born with gastroschisis. she was in the hospital a total of 3 weeks. and had 3 surgerys while in the hospital. shes now out and doing perfectly fine. she doesnt spit up much but she always gets the hiccups real bad. she was able to keep her own belly button after all the surgerys. she has a little scar but its fading really well. shes doing wonderful thanks to her amazing pediatric surgeon Dr. david anthony rodeberg from greenville nc. hes amazing and i praise him for helping my amazing little girl. your website helped me out alot while i was pregnant with her. i was 15 when i got pregnant so without that being scary enough she had a birth defect on top of that, but when i found your sight it helped me so much. it showed me what i was gonna be seeing and what i was gonna be facing. thanks alot for putting up this sight. it helped alot.
My name is Shari Wethington, I am twenty-six years old with my first little one on the way. I am 19 weeks and just found out on Monday that our baby girl has gastroschisis. I felt completely helpless, scared, and even guilty. I cried all day Monday, and haven't stopped since. I recently graduated with an Associates degree in Surgical Technology, so I went straight home and got out my medical books. I had to see for myself what my baby girl was going through, just hearing it didn't seem to be real enough for me. I told myself that I wasn't going to research it on the internet...I just assumed it would be nothing but medical blah blah that would only give me statistics and awful pictures. Well, while checking my emails today something made me type in her condition and as I scrolled down I seen your website and decided to click on it. It will be the only source on the internet that I will look at throughout my pregnancy. I can not tell you how glad I am that you made this website. I have saved it to my favorites to show my husband, and to reread. It was like I had wrote it myself, like it was me telling myself what was going to happen step by step. I cried in the first few pages, then cried when I seen your beautiful baby smiling. I knew right then and there that I have to be strong, and like you said, start enjoying my pregnancy. God will take care of baby girl, just like he took care of your little Ty. Isabella Rose Wethington is due on Feb 11,2012, and I can't wait to start our new lives with her. Thank you so very much for making your website, you have brought me a sense of calm in this whirlwind of a situation.
May God continue to bless you and yours.
I am a 28 year old woman, wife and mother of 2 wonderful kids.
I was born in 1982 and I was born with gastroschisis. I am a living example that miracles happen.
In 1982 ultrasounds were not common unless there were complications. My mothers pregnancy with me was normal until my birth. It was discovered after I was born (vaginal delivery). I had no other complications. I went home 12 days after birth.
When I was 15 I had an appendectomy. My appendix was in the middle if my stomach. That was repaired without major complications. 9 days after I got home from that I had a bowel obstruction. They believe it was secondary to the scar tissue moving around and caused the obstruction. This was repaired without major difficulties.
When I was admitted to childrens hospital the nurses were amazed. They had never gotten to meet a child as old as I was with gastroschisis that survived without major defects. Remember, I was born in 1982 when medical science is not what is was now. I was the first successful repair if this in the area. The surgeon (who was off) was called in to operate. He told my parents that I would probably not survive. He had only preformed this surgery one tine before on a male infant and he did through the night. My parents tell mr that after that first night I was a "celebrity"!!!
When I was 22 they tried to laser remove endometriosis. The doctor could not get through the scarring so this was unsuccessful.
I am now 28 and I have given birth (vaginally) to two children without problems. My female organs are fine and my stomach did fine with both pregnancies.
I am a living example that this can be ok. I do have the "not natural belly button" too. I have never been able to wear a bikini due to the scarring but this is nothing to what could have happened to me.
I hope that my story can help others. Please feel free to contact me if needed.
With God and prayer anything is possible.
8 Years ago i was stationed at Camp Casey Korea (Army), I found out i was Pregnate. I was bearly 21 and had been pregnate for 3 months by this time. I had gone to see my doc and she had run blood tests the week before, this vist was to go over the results. She said everything was fine except of a few of the results came back a little off. No big deal i thought, i'm in korea and military doc's (not all) suck. So she had me go to a Korean hospital for futher testing. The did the ultra sound after aultra sound. then they told me my child (they by law cant not tell you the sex of your child) has an abnormality and that my child will die soon after being born if born in korea. the doctor was very kind and very honest about everything. I can say that this bothered me a bit, but then i knew that this child wouldnt be born in korea and that i would be back st Fort bragg NC, in a few months. By April 15, 2004 i was back in the states and back in NC. The doctors there didn't believe my preg-o records and sent me for an ultra sound at the hospital. as i was going threw the ultra sound i saw the tech get a very confused look on her face and called in 4 other people to confirm what she saw. At this point everyone tried to step out of the room to talk about this. Before i let them walk out i said i already knew, because i was told in korea. while i didn't knew the tech-name for it i explained everything i was told. they felt relieved and confirmed what i knew. and told me that UNC-Chapel Hill was the best place for me to be seen. The next day i went and saw my military doc who sent to the only specialist on base with any dealings, and expertise on this. He gavee very strict orders which i was told to follow everyday or else i'd be in very big trouble. Everyday (even at work with my unit) i was not to walk more than half a mile (total) in a day. i was to eat high protien food, "lots of meat, eat lots of meat!!" (exact words), i was to avoid everything stressfull, and not to have to much fun. By the week of May 1st 2004, i had to see the doctors so much work became a joyful thing. Monday- doctors at UNC, Tuesday- doctors at Fort Brag, wednesday- work, thurday - Doc's at UNC, friday- Doc's at Fort Bragg. This whole time my poor mother was with me since they didn't want me to drive either. i always had to have someone with me at all times. but we made the best of our 2-3 hour drive up to UNC (depending on traffic). She was more worried about my son than i was. by this time in my life i had already been preg-o twice and had misscarrages both times. My mom on the other hand was worried out her mind. Anyway, my first due date was July 4th, i was looking forward to this date so much but since they couldn't determine exactly just how far along i was, and based upon his extimated birth weight, they pushed my due date back to July 12th. me i wasn't happy but understood it was for the best reasons. then July 11 came along, we all deliberated and we casme to a aggreement, if the baby isn't born by july 20th they will induce my labor July 21st. eveyrone assured me and my mother that everything was going to be fine. They even told me that if i went into labor while i was at fort bragg they would send me by Helicopter to UNC, which i thought was cool. anyway after they broke my water at 0930 on the morning of the 21st of July, my son finally came into this world on the 22nd of July 2004 @ 0234 in the morning. i remember clearly the Doctors asking me what i ate while i was preg-o and i quoted my doc "Lots of Meat, eat lots of meat". of course i asked why and they told me that he weighted 8lbs 9oz. which by the way was 4lbs 5oz more then they estimated on the 21st when they did the last check up ultra sound. after this they took him away and started to do thier work on him. I on the other hand had went to sleep since i couldn't do anything else at that time. After i woke up my mom took me to the NICU to see Mathhue, He had the Silo put in so gravity could do it's work, i felt so horible bacuse there were othe Gastro babies in the same NICU as my son and they were all so tiny, so frail, and here my son was twice as big as they were. it was hard to walk in there and see other mom's comment about it. But i got over it, like the doctors told me know one knows exactly what causes this to happen. Back to the point here. He had his wires everywhere, his breathing tube still in, although it was not on. and his PIC line put into his forhead. On July 23rd he had his first and only surgury, gravety had done its work so well that all that needed to be done was close (stiches) the hole. On the 24th of july i walked in to seem him. The nurses had there hands full this him. By the time i got there 0830 he had already pulled his Pic line out, his stomic pump out and was work on the breathing tube. all the while they said he was sudated. I couldn't help but laugh, knowing full well that was my son. Two days later they moved him to his own room up on the sixth floor. After his first 3 days there in that room that the doctors becided that he would get his first taste of food. A whole 5ml of food every 6 hours. I was confused, till they explained that if they gave him a full bottle right away that it could cause complications, which then made sence. So after 2 day and no problems they slowly started to increase his food intake. Buy August 5th he was ready to go home. He never had any problems once i got him home either, well unless you cont never being full. he was always hungry. His first word was plase at 7 moths and was walking by 9 months. He has never had any problems with Gastroshisis. He leads a normal life. the only reminder is his scar. He's smart and extreamly active. and is testing to skip second grade. He still can never get full and always eats, which is fine since he stay's away from candy/junk food. doesn't like happy meals prefers salads. Sincei left the Army i have become a chef, and had a second child who is just fine. I was a little worried that he might have the same problem, but they faded away with time.
Some people may critize me for not worrying and what not and thats fine. All i have to say is find a Doc and staff you trust. lay out the game plan and be active in everything from tests to ultra sounds, to your due date, to what will happen as soon as the baby is born. know the plan and trust that the staff is there for you, trust that the staff will do everything they can to help you. let them do the worring and the stressing. don't let it bother you that your home life will be delayed a bit. Stress is never good, for anyone, but let those who get paid to stress, stress. Why stress when you don't need to.
While i know not every story has this kind of happy ending, but they do exist. Just have faith and hope. Yes his father my husband was there from time to time he also was miitary and stationed at Fort Campbell, KY. He was there when he could be, and he's here now.
Nichole A. Bell
Well my name is Tyler. I am 19 and I am a survivor of gastroschisis. I never really knew too much about it so I have recently started to research a little here and there. My mom has told me that gastroschisis was a 50/50 battle for life. She also told me that I was in a machine that put my intestines back in for 2 1/2 weeks during which she, nor anyone else could hold me or touch me. I now have a 14" scar from the bottom of my rib cage to the bottom of my abdomen and 4 other small scars. I also think it's pretty cool that my parents had the doctors make me an "artificial" belly button! :) other than that It is almost unnoticeable. I am now a proud father of a beautiful 15 month old baby girl and I could not even imagine the stress, unsureness, and emotion of not knowing whether or not she was going to make it. Even not being able to hold her let alone touch her for such a period of time. Because of this I highly respect my parents and all the parents who have gone through, or are going through this. Stay strong and never lose hope!
My name is Brooke and I was 17years old when i got pregnant with my son. I was about 4months pregnant when I went to my doctor for a ultra sound and found out that my son was going to be born with Gastrochisis. I looked at the doctor like he was stupid. I had never heard of it in my life. The first thing that came to my mind was my baby is going to die! My doctor made me a appointment with a specialist at Barnes Jewish Hospital in Saint Louis, MO. I was terrified of what they were going to say when I got up there my stomach was in knots the whole way up there. I was going to saint louis once a month from the time i was 4 months pregnant until the time i was 6 months pregnant. Then from the time I was 6 months pregnant til I was 8months they had me driving up there for appointments every two weeks (Need i say that Saint Louis is 2hours away from my hometown) Then my 9th month of pregnancy I was having to go every week. I did a lot of research on my own because I wanted to prepare myself for the worse. I was due on February 24th, 2007. Well I started having contractions on January 20th and was in so much pain that I went to the emergency room. They admitted me in the hospital for 2 days then on the 3rd day they told me that i couldnt deliver my son at their hospital because they didnt have the proper staff or medical treatment for my son. So it was either I took a ambulance ride to Childrens hospital in Saint Louis, MO or I delivered my son @their hospital then they would send him in a helicopter to childrens. Well neither of those were a option for me. I knew my son wouldnt be able to come home anytime soon after I gave birth to him so I released myself from the hospital went home packed a bag of clothes and left to drive myself to the hospital 2 hours away. Everything went fine with his delivery once I got up there. He was born with his small intestine, large intestine and part of his stomach developing outside of his belly button. They took him start to the NICU, and got everything cleaned up and wrapped up. Shortly after I delivered I was able to go see him. I just broke down in tears seeing my innocent child laying there with a PICC line in his head to help him eat. He was not aloud to have bottles of milk. February 6th was the first day that he got to have a bottle.
tables turned on 2/9/2007. Hayden starting spitting up his milk during a feeding and they had to do X-rays on his belly... They found out that his intestines were dialated which means that he had a bunch of air in his stomach. They stopped the feedings all together and they was feeding him through the PICC line in his head. So that he could get the right amount of fluids. They began feeding him again on Saturday morning. They started him off at 5 mL and they said that he was taking it in good. He remained doing good from there on out. On February 14th,2007 they moved his feedings up to 15mL's every 3 hours and the nurses say that hes back on a good track...
On February 21,2007 we was given the okay by the surgery team to feed him at any time and he can eat as much as he wants. February 22, 2007cHe took 60 mLs at 9:00 am and he took 70 mLs at 12:00 pm. We get to stay the night in a room with him tomorrow night. They did his carseat test last night and he passed it, he had to sit in a carseat for 2 hours. Hayden done great & we was fortunate to go home on Febraury 24th 2007 which was only 2 days before my 18th birthday. I thank god everyday for my son &his speedy recovery!!!! Hayden is now 4 1/2 years old and has not had any complications since he was about 8 months old. I appreciate people making sites like this because its nice to hear that I wasnt the only one going threw something like this.
My daughter and her husband have a gastroschisis baby, now 15 months. He went through the usual surgery and went home, but at one year, he had a second surgery. Prior to the surgery he was somewhat lethargic, had a distended stomach and began to lose weight. Subsequent to the surgery, his personality has changed dramatically. He is much more lively and engaged. He is also gaining weight, but it is not clear that he is gaining at a normal rate, whatever that is. His stomach continues to be distended and his stools are mostly loose and at times, explosive with gas. My impression is that every baby is different, but I am wondering if anyone has had a similar experience. Thanks
Hello. I cam across your site looking up how to spell the word for my nephews school physical. My nephew, Gerald, was born with gastroschisis. I am his aunt, his mother could not deal with this and gave my brother custody and since has been out of his life. However, i like to share this story with parents.
My nephew was born 9/29/96. Yes as of today he is 14 years old. When his mother was pregnant, Dr, Wang did a routine sonogram and seen something in which he ordered an Amniocentesis to be sure what he seen. The answer, gastroschisis. My nephew was born premature, she only carried him 7 1/2 months. He was born at Harris Methodist Hospital in Ft Worth only because Cooks Children's was near by and they knew he would need to be treated immediately. He was in NICU for several months and had 2 operations to repair his intestines. They had to remove a portion of his intestines just to insert in his little belly. The doctors said that he would be behind in growth and in school. He was so tiny when he finally came home he could not fit in pre mature clothes and he was 3 months old. He did have episodes in which he would not eat and it did cause a return trip to the hospital but after a short stay he regained strength and with love from his family he prevailed. In school we worked with him and he eventually not only was he on the same level but he surpassed his class. I was also pregnant with my son Evan at this time and they are 3 months apart. They are the best of friends a cousin could ever want. Evan towers him in size but also protected him. We had them at the same school growing up. However, this experience has caused him some insecurities. He does not gain weight easily. He is tall and slim. He does not have a belly button but a recognizable scar for where they did the surgery. I tell him that this is a mark showing he is an angel for he overcame this at a young age. Eventually in time I know he will understand this. Other kids do not. He does have scars for where feeding tubes, blood drawn and other items were inserted but in time they grow small, however, he can spot them easily. Because of being born premature he does have a lazy eye but thankfully glasses helps hide this. Regardless I wanted to share that there are struggles but when you prevail you look at that miracle child and say WOW, a real angel is among us. When I am asked who is my hero I gratefully say, my NEPHEW!! As I mentioned in the first paragraph, I found this site by looking up the word for a school physical, this kid is a track star!! Run like the wind.
I love my nephew! Gerald Ray Whisenhunt III 09/29/1996 and growing strong!
Hey my name is Valentina and I would first off like to say how much this website has helped me through my pregnancy.this is my first child. I found out my little bundle of joy had gastro at 14 weeks it was confirmed at 19 weeks. I was then encouraged to go to another hospital who could specialize these complications. Im 18 i was 17 when I got pregnate I read in a lot of places that women under 20 are more likely to gave a baby with this condition. So for the remainder of my pregnancy I read did research meet with ped suergeons went through the ups and downs of the correction procedures.( in our case thank yod it was just one). I continued my appointments every 2 weeks until I was 32 weeks then I went every week for sono and nst. My son was doing great!! He was gaining weight great, he was doing a lot of practice with his lungs very active he was in great position for delivery. I was soo anxious to pop him out so I could hold him and get the worst over with. At 36 weeks I started having more painful braxton Hicks. By the time I was 36 and 6 days I've been to the l&d triage 3 diff times. On may 9th I noticed that it had made a full 24 hours that I hadn't felt my baby move, I thought it wad because I was getting close to having him so themovement had decreased. I went in on the 10th of may I was spotting and there was no movement I got sent back home I knew three was something going on I know my body docs said I was fine. On the 11th of may I went back at I was having contractions every 3-4 mins I was then told that I wasn't dialted enough for action to be taken I was at 1cm. I demanded to have a sono the baby wasn't moving and I wanna make sure he's fine they did a30 min sono saw no movement admitted me for 24 hour observation. My contractions were getting worst and worst the only thing I kept thinking about was my little boy having to be wisked away for surgery. I was admitted at about 3:15am at about 6am I went to use the bath room and I felt a sack coming out I then yelled at my fiancÚ for a nurse. I was checked and I was 6 cm. Wow was I happy but nervous and in so much pain by then the pain had made me passout 2-3 times I was put on oxygen. At 830 am I got my epidural and at 11:15 I got some pitocin to speed things up. At 2:45 pm I was at 10!!!!!!!! I got ready and at 2:55 started to push. My son was born at 3:08pm he weiged 5lbs 4oz and was 19inc long. I was in total disbelief. I saw him squint his eyes and he was taken away . I got to then hold him after his abdomin was wrapped and daddy and I hot to kiss him for a minute. 2 hours later I was presented with forms for him to recieve treatment medication and anasisia. An hour after that he was taken into surgery. He came out in about 1 hour and a half. I was so eager to see him. I then walked with daddy to the nicu and our son Henry was laying in a roofless incubaitor connected to more lines then I can count+ the ventilator . I cried. I wish I could be in his position in stead. I was told that everything went very well they were able to put his intestines back in completly. So now it was time to wait. 2 days after his surgery my lilttle guy was raken off the vent and 2 weeks later the suction tube was removed and he was presented with his first feeding!! He was getting 2cc every hour and everyday they brought it up . In 6 days he was drinking an ounce and a half and was ramen out of the incubaitor and he had his central line removed. He is a miricle nurses kept saying we brought him home the day after his one month bday lol :-). He was in the nicu for a month and a day. We are sooo happy to have him home. We couldn't ask for a more perfect first child! I can't wait till our baby gets older so I can tell him about the battle he faught. Thanks so much for your time and thanks for allowing me to share with others.
I'm not sure why I decided to search the web for gastroschisis tonight, at 2:30 am no less, but was pleasantly surprised to find your website. I too was born with gastroschisis. I am a healthy 30 year old woman who has fortunately not had any complications since my infancy. While I do not know all of the specifics, as it is a painful memory for my mother, I decided I would write and share my story, at least what I know of it.
My mom was 18 years old when I was born and was unaware that there was anything wrong with me throughout her pregnancy. I was exactly one month premature and weighed 3 lbs 6 oz. As soon as I was born, the doctors took me away, as I do not think gastroschisis was very common in 1980. I had surgery when I was 3 hours old to replace my intestines. I stayed in the hospital for 3 weeks before I was able to come home and was 3 month old before I could fit into newborns clothes. When I was 1 year old I had a hernia operation and the doctors "made" me a belly button from the skin around my scar. It looks like a little cabbage patch kid belly button and is my favorite feature. I know that it makes me unique and reminds me that I am a survivor. In fact, it is always my 'interesting fact' I share at those get- to- know- you on the first day of school activities. Since my hernia operation, I know of no other complications. While I am lactose intolerant, but do not think that it has anything to do with my gastroschisis. Coincidentally I have met two other women born with gastroschisis (one is 18 years old and the other is 31 years old), and neither of them have had any long lasting complications. I have one brother who had a 'normal' birth.
Also, I chuckled while reading one of the stories on the page about the soon- to- be- mother and survivor of gastroschisis worrying if her scar will pop open. That is the running joke amongst my friends and I...that when I get pregnant my husband better watch out because one day my little cabbage patch kid belly button is just going to pop off and shoot him in the eye. As you can see, this "birth defect" is simply a physical scar and does not bring me down. I just wanted to share my story with the moms out there and say that while the birth may be scary, your child should end up living a normal life. Good luck to you all.
My name is Hayley McNutt and I am 19 years old with my first pregnancy. I just received the news today that my baby has gastroschisis and calm is the exact opposite of what I've been. I am exactly 16 weeks pregnant and got a call a couple days ago that one of my blood tests came back positive. They told me it was the test for the "rarities" like Down Syndrome, Spina bifida, and Cystic fibrosis. I tried to have faith and keep a good attitude until I went in for my ultrasound. For days I convinced myself that it was just a false positive and that maybe I was farther along or having twins! I wish.
I went in today for my appointment and my boyfriend was with me (he comes to every one), and they went right into it. My ultrasound tech said "Well, there's only one baby here!" and I immediately knew that I needed to prepare for the worst case scenario. My doctor came in and explained that the baby had a great heartbeat and was moving around fine, and that everything was normal except its abdominal wall. He explained to me what gastroschisis is and I did my best not to cry. He explained what I'll be going through and he told me that they were going to send me down to Columbus, Ohio (I live in Bucyrus, Ohio) and they'll monitor me there as well. He could tell that my boyfriend and I needed time alone and left the room. I instantly burst into tears.
I've been crying all day. I just don't understand how it could happen to me. I don't smoke, drink, or do drugs and my baby has problems. I feel like it's my fault because the baby relies on me for so much and I can't help him/her. I stumbled across your website today and it made me feel better. I appreciate you making that and I hope to hear from you.
My name is Brittney. I found out at 16 weeks that my son had gastrochisis. I was so scared and didn't know what to expect. At 35 weeks I went to my doctor for my routine visit and my son was in cardiac arrest. They rushed me into the OR and he was code blue on delivery. He was med-fighted to Children's hospital, stabilized, and sent into surgery. His umbilical cord was wrapped around his intestines and majority of his intestines had died. The doctor's performed 5 surgeries on him within the first 3 days he was born. They told us they would never be able to say how he would digest food, eat, have bowel movements, etc. He spent the first 5 months in the hospital. After 9 surgeries, the placement of a Central Venous Line in his heart for him to get Total Parental Nutrition since he was unable to eat by mouth, and the placement of a mickey button for feedings, he was able to come home. He was on 2 pumps when he come home. A bit hectic but oh so sweet to have him home!! He followed in the GI clinic every week to increase his formula via button and decrease the TPN. The TPN cause severe damage to the liver and numerous other risks. At 9 months we went to GI for our weekly visit and the doctor said we need to discuss liver transplant options. The TPN had damaged his liver and it was not functioning properly. One week later he started running a fever and had to go back to the hospital. 48 Hours later he passed away from what they call "gram negative sepsis". They said in his situation the liver was the main factor of his death. But to all of you parents who are in this situation or facing this please let me enlighten you a bit. If your child has a CVL line they are at risk for infection. The doctor said 7 infections a year are normal. I freaked out!!! I told the doctor my goal was 1 or less a year. I am OCD about cleaning so of course I was on top of the dressing changes and some days changed early because I didn't like the way it looked. Well, come to find out there was a chance that his line was infected as well. The line infections are either gram positive ( very treatable with antibiotics) or gram negative (resistant to antibiotics). Since my son's liver was not filtering his body like it was supposed to, the infection backed up into his line.
Gastrochisis is very curable; however, my situation was very different. My purpose of this story is not to scare anyone it is to make you aware that unexpected things do happen in these type situations. Our son was suppose to be able to have surgery make sure he was eating and go home. But that last visit showed unexpected circumstances. So please, those of you that are pregnant please be aware that there are more serious issues that can evolve from gastrochisis. I wish all of you the best of luck and happiness in the world. Hug and kiss those babies and never take one minute for granted.
Hello. My name is Jessi, and I am 16 years old. I was born with gastroschisis. People tell me I'm a miracle, and I guess I'll never know if I am or not. Maybe I was just lucky. I have a scar from the bottom of my breastbone to the bottom of my stomach, and it is intriguing how a small thing like not having a belly button can make one feel so insecure. If the doctor delivering your child gives you the option to enlist the help of a plastic surgeon to create a belly button for him or her, do it, especially if your kid's a girl.
Perhaps this will give some assurance to expectant mothers. Gastroschisis was not mentally or physically detrimental to my development, aside from the lack of belly button and the scar. I have a 4.1 GPA and I am capable of doing everything a normal teenager can do. As cliché as that sounds, it's true. However, I do not see my scars (from the operation to fix my intestines, and from the various tubes they had to put in me) as a reminder of how I survived gastroschisis, but as a deformity. It's shallow, but I'm being honest so no other teenage girls with gastroschisis will have to put up with all of the pointing fingers, jokes, and insecurities brought upon them by the unfortunate lack of a nonvital body part. I hope I helped.
Hi I'm a mom of two beautiful boys, both born with gastroschisis. They are two years apart, but sadly my second son has had allot more problems with it then my first son did. For your doctor to say it would be impossible for it to happen twice is just wrong. But my doctor told me the same thing too. He said it would be like lighting striking in the same place twice. And sadly for me it did. But I love my children just the same. I have heard that it's never happened to a mom three times. And yes there are other moms who have had two with it. There's a other mom in the nicu with her second one too. So it makes me up set that doctors rule so much out with gastroschisis. They don't really know what cause it, but are sure to tell it won't happen again. Idk it just fells good to vent a little. Lol I would really like your feed back, thanks.
Hi my name is Jessica Gilbert, I am almost 29 years old and I was born with gastroschisis. My mother had me when she was 21 years old and had no advanced warning that I was going to be born this way. It was terrifying for her and hasn't exactly been a picnic for me either,but reading your story together we realized we were not alone in our experience or feelings. I just wanted to thank you for starting the site and helping me to realize that there are many others that have gone through or are going through what I have. I hope that Tyler continues to do well and has no further complications he is truly a miracle. Thank you again for sharing and if you would ever like to talk about anything to do with gastrochisis please do not hesitate to email me and I will do my best to share with you my experience.
Hi my name is tammy. When I was 19 weeks and 5 days pregnant with my twins, I went to my vary first neonatologist appoint. Their I found I was havin a girl and a boy. Which was good news for me and my husband and my 5 year old at the time. But along with good news we also got some bad news. I was funneling ( that's when the amniotic sack goes into the cervix) but also that twin a the girl ( whom we named ashlynn hope) had gastroschisis. Because of the funneling I was admited to the hospital into the hospital asap to have surgery to put a cervical cerclage in ( a stich in your uterus to keep the babies in). Well when the nurse was putting my catherter in ( which hurt extremly bad and I have had 2 other surgergies and had to have one put in both times and had one put in after I delivered my oldest because of how bad I tore) I caughed and I had thought I urinated on myself because I didn't know what it felt like when your water broke. Well come to find out the nurse didn't know what she was doing and she broke ashlynn's amniotic sac. That happend nov 8,06. Well on the morning of the 9th I felt something weird down their. Well that something wierd was ashlynns umbelical cord. I had delivered it before her. A few hours went by and my neonatolist came in and did an ultra sound. The news wasn't good. Because I delivered ashlynns umbelical cord first my cervix basically cut off her air way, and ashlynn passed away. So they gave my husband the option of hooking me up to pitocin to deliver ashlynn and right after I delivered her they do the surgery for the cerclage to save our son ( whom we named ashton james), or not hook me up to pitocin and risk me gettin a infection and kill me and ashton. We all know the decision he made he had them hook me up to a vary low dose of pitocin and november 11,2006 ashlynn hope was born asleep weighing in at 9oz and 11inches long. They did my cerclage surgery. And after it I was on magnesium to keep me from going into labor with ashton for about 24 hours after surgery. I was realeased from the hospital on nov 17,06, and buried my ashlynn hope on the 21st. My due date for ashton was march 28th. They took my cerclage out feb 1st. And said I would more then likely go into labor with him by the end of the wEek. Well they were way wrong. My little miracle ashton james was born march 31st 2007 weighing a wooping 7lbs 1oz(they said he would be small because they had to keep ashlynns placenta in until I delivered him) and he was 18 in half inches long. Ashton is now 3 almost 4. He knows that someone is missing(they said he seperation anxiety at 6 months old because of his loss), but other then that he is a vary active 3 year old. They recomended for me not to get pregnant again(but they wouldn't cut and tie my tubes) to my surprise the summer of 2008 I found out I was pregnant again. I was in the vary high risk category due to cervical incompatance. I had to have a ultra sound a week from the time I was 12 weeks until 24 weeks(at 24 weeks a fetus can live outside the womb with help). At 20 weeks I had my last ultra sound. I not only found out we were having a girl(when I found out ashlynn died I told my husband I would give him another daughter) but that my cervix was ok. And on february 24th, 2009 angyl love was born weighing 7lbs 6oz and 18 inches long. She has a birth defect. But its not a bad one. She has a sacral dimple (a hole right above the anus which is sometimes can be spinia bifidia. But they did an ultra sound and she didn't have spinia bifidia. I also had my tubes cut and burned. Sometimes I regret having my tubial, but then I think what if. I have four beautiful babies and just because one is in heaven does not mean she shouldn't be accounted for.
Sent from Tammy Lynn Lewis
Thank you for this chance to share. I know when I was 19 and pregnant with Vanessa I was scared and unable to find anyone or anything that understood what I was going through except for the doctors that only understood through a medical stand point which in our case was not comforting at all.
My daughter was born at 31 weeks after being in labor for 5 days while they tried to stop my contractions. On the fifth day I had a side effect to the medication and my lungs filled with fluid, so they did an emergency c-section. After being born they rushed Vanessa to surgery. And I went to an ICU myself. I was unable to see her for over 24 hours. Her daddy stayed with her for most of that time.
After a week they were able to preform the second surgery. After which she was still be fed through tubes because the intestines were not attached. But in that I we started holding her and changing diapers and just helping the nurses, for the next two months.
(I know that a lot of the times the parents rely on the nurse to know how to care for the babies but for us we did run in to a few nurses that had not changed any diapers because they did not contain a bowel movement so it is important to ask about everything even diaper changes!)
Then it came time for the third surgery, in which they put in a colostomy bag. We began feedings after that. She was quickly able to move to a transition room and then home. She returned in two more months to reattach everything. Which was a success, minus a belly button.
We did run into some issues when she was about 3 with some major pains. At one point she held a bowel movement so long that she had a sudden fever which caused a seizure, CPR, a trip to the emergency room, some ex-rays, and laxatives.
Now, Vanessa is 6 and in kindergarten. I was afraid that their might be problems with other kids making comments but she knows that her scar is special and she considers that her belly button.
The stories I read would have been encouraging except my little boy who was diagnosed with gastroschisis didn't make it.
We found out he had gastroschisis when I was around 18 weeks pregnant and were sent to a bigger hospital who specialized in this. They made it sound like everthing would be ok and that they could fix the problem and we would take him home and everything would be fine. I went back and forth to the bigger hospital every 3 weeks for an ultrasound and to meet with a doctor who specialized in gastroschisis. I went on a Wednesday for an ultrasoud and appointment at 31 weeks pregnant and they said everything was fine and to come back in 3 weeks. That Saturday, my water broke, sending me into the hospital where I sat for a week and a half on antibiotics so I wouldn't get an infection, waiting to go into labor. I finally went into labor on my own, the day before I was 33 weeks. After he was born they took him away. He weighed 5 lbs 2 oz. Very big for being born 7 weeks early. About an hour later, the doctor and surgeon came in to tell us the devastating news. The bowel that was outside of him stomach had twisted and died. There was nothing they could do to fix it. They didn't know how it happened either, or when it happened. They thought sometime between a couple days to a couple weeks. He would only live until we made the heartbreaking decision to take him off of oxygen and let him go. He lived for two days and was one of the sweetest little boys in the whole world. He changed so many lives for only being here for two days. The doctors said that besides the bowel being dead, he was very healthy. He was a good size and had good lungs. I will never forget my sweet baby boy and if there's any one who this has happened to, I would love to hear their story also.
My name is Vanessa and I just wanted to share my story with you and your readers. First of all I would like to say thank you for creating this site and outlet for everyone. It has helped me tremendously with coping with everything and giving me the strength to know that everything will be ok.
This is my second pregnancy, we currently have an adorable little 18th month old and we're so excited to start on a sibling for her right away. That excitement soon turned in to fear and constant worrying once the doctors told us that they had spotted something slightly wrong with the baby. They called in a specialist to confirm and that day my heart and the rest of my body went numb. I had no idea what gastrochisis was and I was scared out of my mind. The hospital staff was not much help either, everyone we seemed to see, from the ultrasound tech to our own personal doctor seemed to point in the direction of terminating our pregnancy. My own doctor even broke down and cried on me, when I had no idea how severe or what to expect from this. But termination was my last option. Immediately, I went home and did some research, switched hospitals, and I am now 8 months pregnant.
I am still a little worried because we won't really know how bad things are until he arrives. How long he may have to stay in the hospital, how i will be emotionally, how this will effect him in the future, and so many other concerns. All I can do is pray and think positive. So far at every doctor visit and ultrasound, the doctors have given me nothing but positive feedback. But as mentioned, your site has helped me in so many ways. I feel every way you did and more and your story as well as everyone else's has helped me in giving me strength that everything will turn out fine. I am aware that he will have to spend some time in the hospital after, but all the stories on your site has given me the hope that he will be in my arms and coming home with us soon. Thank you and everyone else for sharing your stories. I never knew anyone who had this happen to them, and although our hospital has mentioned that they have seen more babies with gastrochisis lately, it helps to hear personal experiences. I will update you soon within the next couple of months once he is hear and hope to have positive feedback. Thank you all!
I wrote back in May of 2009 about a story of my wife and little one. Well he is two now and he has never had a single problem associated with Gastroschisis. He has a cousin that was born 3 weeks before him and he has always been trailing her in everything. However just recently we started seeing him just explode and he caught up to her in no time. We are so blessed to have our little guy and appreciate everything that everyone has ever done for him.
Hi my name is Michelle Burt and I was just on my phone google searching about Gastroschisis because I was born with this March 25th, 1987. I was just curious to see how babies with this are handled now a days. I am 23 years old and I too plan on having kids one day. I thought I would shed some light for some of the mothers to be that have found out there babies have this.
When I was born this defect was fairly new. My mom was 23 years old when she had me, I was her second baby. My mom had a C-Section and I was taken away from her right away. I was 2 months premature and weighted 3 lbs when I came out. I had to go into an incubator for I think a month or so. My dad calls me his miracle baby for good reason of course. Lol (besides I'm the favorite) my mom had my older sister at 18, she was premature 2 months as well and weighted 5 lbs and she didn't have Gastroschisis. My younger sister was full term at 10 lbs and she was fine as well.
I do admit my first worry was if I was going to be able to have kids myself one day. To my understanding I definitely will be able to. Gastroschisis has nothing to do with the umbilical cord so I should be good. I do have the scar still, I think now a days they make the belly button right then and there. With me they just sued me up and said I could get the surgery later if I want to. I've never had any surgeries other than when I was first born and no other complications except some abdominal pains that I have gone to the doctors about and everything checked out fine. They did tell me that they saw with the CT Scan my bowels are more to the right then normal but not a big deal, just where I get my pains the most if I get any.
I was reading all the stories on this website and I just want all the Mothers to know not to lose hope in there Gastroschisis baby. Miracles do happen and I am definitely proof of that. If you want to know anything I can definitely give my parents a jingle and ask them. I know it was so long ago but that is just more incite that the medical industry has advanced since I was born. Xoxox
my name is shannon and im from iowa. my daughter brooke, who is now 18, was born with Gastroschisis. she came 6 wks early weighing only 3lbs 10ozs. quite a scarey experience. my other daughters and i were discussing her and it made me curious to get on the internet. going thru your site i came across pics of a baby who's intestines are left on the outside and wrapped. i found this very strange, maybe this is how they treat it now. my daughters surgery was done at the university hospital in iowa city, iowa. immediately following birth she was givin a breathing tube, stablized and taken to surgery. they opened her up, put the intestines back in, then stitches up the stomach skin leaving the stomach muscle open. she was in intensive care for four weeks then got to come home wearing a childs neck brace around her tiny tummy. at 6 weeks we went back for another surgery were they repaired the stomach muscle, fixed the existing surgical opening so she would have a thinner, straighter scar and took out her appendix since they were already in there. in the follow up appiontments we had with dr.s they told me how far behind she would be and suggested programs for children who were behind in development. boy were they wrong. she might have been tiny for her age, but there was nothing slowing her down. not then, nor eighteen years later.
So I guess I'm one of the older few! I'm 25 (26 on Sunday) year old gastro not so baby anymore baby! I'm here to help anyone who has any questions about their child growing up. I've been through it! :) And trust me I'm fine! And they didn't know I had it till I was being born!! Talk about a shocker for my mother!! Anyways I'm here and on Facebook look me up - Jessica Meade - Dallas area (Irving to narrow it down) But if anyone has any questions please feel free to email me! Thanks!!
My name is Lisa Jones. I have a daughter, Suzanne, who was born with gastroschisis. I was so happy to see your website! I am actually looking for some help with a bit of a problem. Suzanne is almost five. She is starting to notice many things about people and one in particular is that her belly button is different. She has been complaining about being different now and has actually started crying about it. I have tried explaining that she has a special belly and that she is not the only kid out there that looks like that. She seems interested in at least meeting someone that is special like her. It may be a small thing to complain about but to a five-year-old, a belly button is important I guess. If you could help me find people in the Utah County area that have been through this, I would love any information. I realize it is a tender situation to some but hopefully someone out there has the same desire to find friends who have been through the same experience. Please let me know.
Lisa! I just want to say thank you for your website! It has helped my family, my loved ones and myself feel a little better about all of this. I am 20 weeks along and just found out two days I am having a boy! Along with the terrible news of him having a birth defect! My boyfriend and I were caught off guard and didn't know how to react to the genetics counselor they sent us in to talk to right after telling us. Of course I wanted to go home and read about and BREATH! They did give us the worst case scenario right off the bat that our baby could die or be stillborn. That was a lot to take in five minutes after getting all the cute pictures of him and discovering it was a boy. Now I am much more prepared to go back in there and meet with the doctors and ask questions! Thank you and everyone else who share they wonderful stories!
This is my story. When I was 17 I became pregnant. At my first 12 week ultrasound they found the Gastroschisis. Although they weren't 100% sure that is was gastro or omphalocele because of the size of my baby boy.
From then on out I had anywhere from 2-3 appt a week. It was nice to be able to see/hear my baby so often. I was addmitted to St. Francis hospital in Peiora Illinois at 37 week. I was giving an amnio and with in a few hours was told the baby's lungs were mature. Off for a c-section I went.
He was born 3 min after the first cut. He was warped up and I got to see his face. 45 mins after he was born he was in surgery. He had a total of 5 orgin on the outside of his stomach. All was placed back inside him in the first and only surgery. All he has proof of the surgery is a little white scar on his upper right chest from his central line. His belly button looks great.
Thanks to Dr Pearl and his huge team of folks, My son was only in the hospital for 3 weeks. He was the 7th baby born that week at that hospital with the same defect. There were 6 boys and 1 girl.
He is 12 years old and plays baseball, basketball, football and wrestles. He is a normal boy growing into a great young man. Oh and he loves to hear his birth story and see the befor and after pix....he is a boy after all lol.
When I had him 12 years ago I was told this happends 1 in 10,000 births. Over the years it was become more frequent. I have had 3 more children since then and all have been healty as a horse.
Tracy, mother of 4 healthy beautiful kids.
I just came across your site. I was born in 1984 with gastroschisis. I'm healthy now, but as an adult I'd like to share some info that might prepare parents dealing with this.
On about 3 occasions throughout my adolescent years I had intestinal blockages. Which began as a lot of gas pains and eventually lead to me to the hospital in much pain and had to have a tube inserted down my throat and stomach pumped. Because of the scar tissue, buildup occurs.. which the doctors tell me is inevitable and has little if nothing to do with my diet.
Also, as a young child (3-6 yrs) I developed scholiosis because of my lack of properly placed abdomen muscles. Which resulted in hip braces and eventually 3 different spinal surgeries, requiring me to wear an upper body cast ( all 3 during the summer).
Ive never came across anyone with my condition...now that Im finding there are many others out there, i felt this a good thing to share. Thanks for your time.
My name is Abby, and I'm from Wisconsin. I was born 2 months early with severe Gastroschisis weighing 3 lbs and 14 ounces. I had 5 surgeries as an infant and remained jn the hospital for 6 months. Doctors said I would never be able to eat. But my mom chased me around with a spoon as a toddler :) and at age 7, I got my g-tube removed. When I was 5 I had a bowel ubstruction, which is caused by scar tissue wrapping around the intestines.
I am currently 13 years old and you couldn't tell the difference between me an an ordinary kid. I'm small for my age, but I eat like a normal kid :P
God had his hand of protection around me for all my life. He's the only reason I'm alive. I'm having surgury #9 in 2 months after having #8 this July. This may be my last surgery EVER!!!! Please Pray :)
I'm not fearful for this surgury because I know God is by my side. The only thing I'm afraid of is shots lol. I scream and cry like a 2 year old. Gastroschisis babies are survivors but that doesn't mean they like shots ;)
This is my gastroschisis story. I hope this was encouraging.
I found your website shortly after i had found out about my sons diagnosis and found it really helpful (especially the pictures even though nothing can prepare you for seeing your child that way). I found out at 18wks the specialists that we talked to said that we are lucky it was gastroschisis and not any of the other possibilities, they confirmed the diagnosis by an ultrasound and an amniocentesis (which hurt). I was so scared when I found out then after seeing pictures I was even more scared because I couldn't imagine my first child coming into the world like that. Also during my pregnancy I had a problem with having a low afi (amniotic fluid level) so i spent 4 days in the hospital around the 24th wk of my pregnancy and got a round of steroids to help develop his lungs then I was put on bed rest for the remainder of my pregnancy. Then at 34wks pregnant I was hospitalized till the baby was born because of low afi and he was in the 8th% of growth. In the hospital I had daily nst's which monitor the babies heart rate, these usually take 20- 60min and if they're abnormal they have to do an ultrasound test during which the baby has to to 7 things and if he doesn't then that would be a reason to deliver. So 2wks after being admitted to the hospital my dr said i could go home if on the growth ultrasound that i had the next day the baby maintained the 8th% (this was a sunday that she said this). So on Monday the growth ultrasound showed that my son was now in the 3rd%, so they decided to do another amniocentesis (this one didn't hurt as bad because this dr used a numbing agent first) to see if the lungs were mature enough to deliver, and they weren't. So they decided to do another round of steroids and scheduled a c-section for 48hrs after the round of steroids had completed. But after half of the steroids had been given my son wasn't reacting normally on the nst so they did an emergency c-section that day which was exactly 4wks before my estimated due date. In the delivery room after they removed my son from me the baby drs and nurses rushed to stabilize him. So i only got to take a 2-3 second glance at him before they took him to the nicu. Then we waited in my labor/delivery room till he was stabilized and that's when they wheeled me through the nicu on the bed w/ my boyfriend and family that i had with me and he was in a plastic bag up to his armpits. So my son Cyler Reid was born 4lbs 6.6ozs at 36wks, his intestines, part of his bladder and his right testicle were born outside his body.
The next time i saw him they had put everything into a silo which looks like a plastic bag filled with his intestines tied to the top of the warmer so that gravity would help move things back in the body, he was also heavily sedated (so much so that he looked lifeless), and he also had a ventilator in breathing for him. Then every day for 5 days one of the surgeons would tie the bag so that more of the intestines would go into his body. At 7days old they had the surgery to close him up but since the hole was so large they had to use a patch (which looked like blue mesh in a circle about the size of a silver dollar). Then he had the ventilator in for another 3days, and once that was removed we were able to hold him. He still had the broviack line in his leg (which is like an iv) and a tube down his throat going into his stomach draining everything from his stomach which was a green color. So once the liquid turned clear and only a small amount was coming out they started feeding him. They started at 5ml then 10 then 15 all the way up to 45ml then he could eat however much he wanted. We were told that he was getting really close to coming home when he got an infection and was extremely bloated so they stopped his feeds. He was on antibiotics for 10 days. They started feeding him after 7days and the infection wasn't really going away so they had to remove the patch and just leave the epidermis that his body had created between him and the patch. They also decided that he just couldn't handle my breast milk so they switched him to Pregestimil (which is a formula that is already broken down so its easier on his stomach). After the surgery to remove the patch he got up to unlimited food really quick and was able to go home after a little more than 2months in the hospital.
Once he was home the only problem we had is that he would have problems passing gas so we had to give him gas drops. And since he was in the hospital so long where they keep him swaddled until they change his diaper and feed him. So now he won't sleep unless he's swaddled with a pacifier in is mouth, and he also doesn't cry when he has a dirty diaper. except recently because his stool still isn't solid and the dr told us that when its runny like that it really stings his tush. Cyler is now 6months old and around 12lbs, and he is the happiest baby i've ever seen. He loves playing he wants to crawl or walk more than anything. He can now sit up on his own and stand up by holding my fingers. Besides the scar on his tummy you would never think that he was born with anything wrong with him.
Here are so photos of everything he went threw till now
I just wanted to say thank you for your wonderful site. We found out on Monday that our little peanut has Gastroschisis.
My husband is in the Air Force and we are currently stationed in Turkey and far from family and friends so hearing this news was very difficult. After getting home from the doctors office we decided to look up any information on this that we could find. Here in Turkey they tell you the worst thing first it was only after asking the doctor what was next did he tell us to do further testing. We had an amniocentesis done yesterday to check for additional problems.
Your website has been the most helpful to me over all the ones that we have found. To know that there are other couples out there that have gone through this or they are currently is very helpful and reassuring. At this time we still don't know if we are having a boy or girl and to be honest I don't really care any more as long as the baby stays as healthy as possible. I will returning to the states in November to prepare for the birth of our baby there since they do not have the care here that little peanut will need. Again Thank you so much for your site and keep you the great work.
If You Can Dream It, You Can Do It. -Walt Disney
I just wanted to say thank you for your wonderful site! I am a NICU nurse in a level IIIC NICU in a children's hospital. My very good friend just found out yesterday during her level 2 ultrasound that her baby has gastroschisis. She immediately called me for some info and comfort. Of course I can give her info from a NICU RN perspective, but can offer her nothing from a Mommy perspective (my son is adopted and was healthy and 7 months old when he came into our lives). I was just looking around the internet so I could send her some links to websites that sounded accurate and came across yours. What a blessing! Your site is informative from a medical AND personal perspective and will really give her an idea of what to expect.
Again, THANK YOU sooo much for sharing Tyler's story, he is beautiful! Congratulations! (a couple of years late)
Just came across your site. How I wish I had this much information when my son was diagnosed 18 years ago. I was 18 years old when I went in for my 14 week sonogram and found out my baby had gastroschisis. My ob/gyn didn't know much about it so I left his office terrified. I went to get a high level ultrasound and a high risk ob/gyn at Westchester County Medical Center. The diagnosis was confirmed and I went on to get an amnio to make sure that there were no other abnormalities. Fortunately he was fine. I planned to have a planned C-section at 32 weeks and they brought my baby into me so I could see him and touch his hands and feet before surgery. Only 2 hours later they were able to put his intestines back inside. Besides the gastroschisis he was a happy healthy baby. He does have a long scar on his belly and no belly button. We went home 8 days later. During his surgery they also removed his appendix so that we would never have to mistakenly take a gastroschisis pain for an appendix pain. Of course it took me a long time to not associate constipation, gas, and spit ups with the gastroschisis. Now after 3 kids I know that these things are just associated with being a baby. It was so hard to see the other babies in NICU. I count my blessings everyday.
My first grandchild, Russell Davis, Jr. was born on July 30th, 2010. He was 10 days early, by due date, 5 days early by the c-section schedule. His surgery was done later the same night (he had to be transported 100 miles to Atlanta). He has done really well until today, and he started producing 15 times the amount of stomach acid that he has been producing. Has anyone else had this setback or something like it? I have been very hopeful that he would be able to start feeding soon, but this will prevent that. Hope for some encouraging news.
My name is Angel. I to have had a daughter that had gastrochisis.I found out at my 12 week check up with my doctor during my ultrasound. I was told at first they thought it was cancer in her belly.So i was sent to another hospital to a specialest. There is where i found out what she had. I was scared to death about it i thought the worst.The new doctor that i was seeing wanted to deliver me a month early so that she could go through her surgery. Well thinking the worst i got the worst i was at my x sister in law baby shower and did not know i was in full blown labor at 30 weeks with my daughter. I called my doctor told her i was having pains and spotting and was told to get in.Well i got to the hospital they hooked me up to all the machines and ect make sure she was ok. Well after looking for her heart beat and trying to hear it she was pernounced dead after 2 hours of trying. I was admited into the hopital in full blown labor and dieing inside cause i lost my first chile ever. I was 17 years old and scared thought my world fell apart. Well being in the hospital and hurting i was in pain wanting this over with i was asking for a c section . The hopsital would not give me one becasue i was in such bad shape. My health was failing and i did not know. So being in the hospiatal i was in labor for 2 weeks. I was put on 3 diffrent inducsints to get everything to go the way it was spost to.. but it didnt my cervics never softenied and i was not diealiting but i was in full blown labor.. which i did not understand. It finally got to the point here i was to the point of giving up i had to have something down i was going through alot and should not have been. So finally i said u need to do something or i will go to another hospital. So the doctor i had told me if i could get to a 1 or a 1 1/2 she would break my water and see if that would help. I got to a 1 and water broke pains came on stronger still in labor.. But went from a 1 1/2 to a 0 my body was not wanting to have this baby at all. So they said that we needed to do something so we went for going to see if they could get her out vaginaley i said yes lets do it. Well i went it for it not remembering anything and coming out in more pain then i went in. Come to find out I had died 3 times on the table from the infection that had got into my blood stream from her being passed away for over two week inside me. So they had to get permisson from my now x husband and my mother to give me a emergency c section or else i would not make it they would not be able to bring me back .So they did the c section and got her out. After i got out of the recovery room i got to see her. That was the hardest and worse and most painful thing i had to ever deal with .She was almost full turn but was .8 of a pound which is 223 grams.The smallest they have ever seen in that hospital. To this day i still have alot of problems dealing with it,i blame myself casue i feel i didnt do the right thing for her to have a life. But i am proud to say i have a healty 6 month old baby gurl that is named after my daughter Hailey. Nevaeh Hope brought life to me after her. I just want everyone to know that this is nothing to not worry about it is a very scarey thing to have to face. I face it everyday not having her her. I still dont know how to deal with it .. So please if anyone can help me it would be great. Thank you lisa for this site its a great thing.. R.I.P HAILEY SUE JANUARY 27,2004
hello my name is Jessica I am 27 years old I am just over 12 weeks I attached a ultra sound pic of my unborn. I am considered a high risk pregnancy from the very beginning. I take heparin shot twice daily. I went into my doctors office for a routine check up ultra sound. My doctor came in and told me that my baby has gastroschisis. My fiancee and I were like "huh? What's that" . My doctor told me this is the "game plan" We come back in four weeks for another ultrasound and either A- the baby fixed it our its own or B- it's not fixed. If it is not fixed than he wants to do an Amniocentesis to find out if its related to any other genetic disorder. The following are the scenario's given to me and my fiancee.
1) the baby has gastroschisis with no other genetic disorder's the baby can be carried full term and need surgery right after birth
2) the baby has extra stuff on chromosome 18 (which will be tested with amniocentesis) the doctor said babies with extra stuff on chromosome 18 DO NOT SURVIVE and I have two options either abort or carry full term and the baby dies after birth
After much research and crying and stressing I came across your website you and the many stories give me hope things will work out. Thank you!! If you want I can keep you updated and give you more ultrasound pics to help other people in the same situation.
If you have anything else you can tell me that would be great.
thank you very much
I came across your website and thought it was great! I found out my son had Gastroschisis at my 16 week ultrasound. The doctors explained that this is just a defect that occurs, no one is to blame and they do not know what causes this. Tyson is my second child. During the entire pregnancy my son was very active kicking and moving all the time!
I was told I could do a vaginal birth and that it would not affect my son. I was also informed that I would be required to give birth at UK Chandler Childrens Hospital in Lexington,Ky. Because they had the only level 3 NICU on this part of the US and they see these cases all the time.
At 31 weeks I went into pre-term labor. I thought they were only braxton hicks contractions. So I was required to do NST two times a week. A week later they noticed during my NST that the babies heart rate was fine but he was not moving around.
They did an emergency ultrasound and watched for 40 min, he still didn't move. So they sent me straight to the hospital. When I arrived at 6pm they decided to do frequent ultrasounds threw the night and an amnio to check the amniotic fluid for infection. After the results came back negative and still no movement they decided to induce me at 32 weeks. 5 hours later I gave birth to Tyson at 3 pounds 15 ounces on July 24th, 2010. After he was born they put a bag over his entire body to keep moisture in and a tube down his throat. They also ask you to breast feed because they progress so much faster and it's easier on their belly.
Three days later he had the surgery to close up his belly and they were able to make it look like a normal belly button. He is urinating and everything like he should. They also stick a tube down their throat to suction up any extra acid. They also watch that and they would like no acid to come up. That means the intestines are working!!
Doctors say after he is eating well he can come home!! I would say the hardest part for any mother is dealing with the hormones after birth and not being able to bond with your baby.
It has been a week after he was born and I still have not been able to hold him for the first time. They say I will be able to in 3-4 days :) can't wait!!
I would like to thank you for developing this site, it was so helpful in my experience with gastroschsis. Here is my story:
My daughter was diagnosed with gastroschsis in January 2010; I was approximately 18 weeks pregnant. I had some blood work done that tests for chromosomal abnormalities such as Down Syndrome or Spinda Bifida and my OBGYN called one day while I was at work to inform me that the Alfa Protein Levels were too high in my blood and that I'd need to see a high risk pregnancy physician for additional testing (she informed me that high levels can be spinda bifida while low levels sometimes mean down syndrome, but she also said that sometimes there are 'false positives', I prayed we had a false positive). Who was to think that I actually hesitated in taking this test when it was first offered to me thinking "everything is fine". No mother ever expects to get this type phone call. Anyhow, after worrying myself to death, they made an appointment for me to see the high risk specialist 4 days later. Those were the longest 4 days of my life. I googled alfa protein levels more times imaginable and prayed that it was a 'false positive'.
On the day of the appointment, we checked into the hospital and walked together to the maternal fetal medicine floor. The specialist and nurses were really kind but nothing anyone could say could make me feel better. I was shaking on the table as the tech performed a level II ultrasound. We didn't know the sex of the baby at that time and she told us she thought it was a girl. After the tech was finished scanning, the doctor came in to scan me himself. My legs and body were trembling so bad until the doctor told me that that everything was fine with the baby's spine and she didn't have spina bifida. He continued to scan me and I just knew something else was wrong. After he finished he told us he wanted to see us in his office and that is where he told us that the baby had gastroschsis; he said the upside of things is that it was something that could be fixed and spina bifida couldn't be fixed. From there on, we seen the specialist every 2 weeks which gradually turned into every week. At each appointment they would perform a level II ultrasound to check the baby's bowels and health.
According to my doctors, the average gastroschsis baby is expected to be in the hospital for approximately a month. I prepared myself for this by searching the Internet and that's how I found your site. (my husband said I tortured myself) I also you tubed videos of gastroschsis babies in the hospital so that I could prepare myself for the recovery period.
I went into labor on the night of 6-09-10 (but I didn't know it). I told my husband that I was going to make a doctor's appointment the next morning before he left for work because I didn't feel well and I thought I was 'leaking'. We arrived at the hospital around 11 am that morning only to find out that my water bag broke and that I'd be having the baby - I was not expecting this as I had just made 37 weeks. Labor went fine and baby was delivered that afternoon at 7:40 pm. She was 5lb 6oz and 18 in long. I had a vaginally delivery. They had a surgical team waiting to take the baby and she was immediately brought into an adjoining room after delivery. After they wrapped her up and placed her in a portable incubator, they wheeled her in the delivery room so that my husband and I could see her briefly.
As I was recovering from labor, our pediatric surgeon came into our room approximately 2 hours after delivery to tell us that he would be taking the baby into surgery and if possible, they would put the organs back in. He couldn't tell us whether or not they would fit but he said he would do his best to do what was best for the baby. He informed us that the surgery could take anywhere between 45 min -3 or 4 hours, depending on the case.
As we waited to hear from the surgical team, I felt a little better as time passed. I knew the longer that they took, there would be a greater possibility that the organs would fit and that they would not have to be placed in a silo. Three hours later, the pediatric surgeon came back in our room to inform us that the surgery was successful and everything fit back in. He said it was a tight squeeze but the baby was stable and was recovering in the NICU. That was the greatest news I've ever heard in my life even though I knew that there would be a tough road ahead of us.
The baby was placed on a ventilator and there was a suction tube placed in her stomach to drain any fluids out. She was hooked up to an IV line to receive her nutrients and was on morphine for the first 4 days of her life. She was taken off the ventilator 3 days after surgery and was breathing on her on. They also gradually weaned her off of the morphine during these 4 days. The NICU team attempted to put a pick line in her foot so that she could receive her nutrients via this line and not a regular IV, but was unsuccessful. The pick line is more of a 'permanent' type of line that would allow her to receive her nutrients because receiving them via IV, the line would go bad every 3 shifts if not sooner. On the second attempt for the pick line a day later, they were successful. Unfortunately the line only lasted a couple of days and then it went bad which isn't typical. She was placed back on fluids via IV. Her stomach continued to drain and eventually the suction was taken off and her stomach was allowed to drain on its on (Day 7). She still had a tube in her but it was draining into a diaper rather than into a canister via the machine. By day 8.5, they were able to take the tube completely out of her stomach. what a relief! Now they would gradually introduce breast milk to the baby but she would remain on the IV nutrients (TPN). The doctor's couldn't believe the progress she was making in such a short period of time. I stayed at the baby's side as much as possible; I was there by 11 am every morning and I didn't leave until 6 pm (visiting hours were restricted from 6-8 am/pm). My husband and I would go back to the hospital at 8pm and stay for about 2-3 hours. We were active in her care; we gave her oral care before she could eat, changed her diaper, gave her her bath, etc. Everything that they allowed us to do we did it. As day by day progressed, they gradually increased her feedings. By day 12, she was at full feeding and doing really well. Day 13 we were allowed to 'room in' with the baby. The doctor wanted us to take care of the baby on our own on hospital grounds. (They have rooms on the NICU floor reserved for parents to 'room in' before the baby is discharged.) She had steadily gained weight and showed no signs of needing to remain in the hospital so we were discharged the morning of Day 14. Both the pediatric surgeon and the doctor came to visit us that morning. This is when I learned that the baby's stomach, small intestine and colon was outside her body when she was born. The pediatric surgeon as well as the pediatric doctor told us that she had the fastest recovery that they'd ever seen and the pediatric doctor couldn't believe how well her recovery went.
Six weeks later, the baby is still doing really well. She gets a little irritable before her bowel movements and has some days where she is gassy, but she is a healthy, happy 6 week only baby girl. She is approximately 8lbs now and her scar isn't really noticeable. It looks like she has a long braided belly button and its flush with her skin.
Thank you again for your website. It truly is very helpful.
My name is Nikki and I'm from Auckland, New Zealand.
At my scan last Friday, my little person was diagnosed with gastroschisis. I knew something was wrong when the sonographer asked myself and my partner back into the room shortly after my scan. It broke my heart to hear him explain what gastroschisis was and what it meant for us and baby in a nutshell.
You go into your scans thinking your little person is going to be absolutely fine. When it isn't, your world around you changes almost instantly. How this could have happened? What did I do? What could I have done to prevent this? All these questions have consumed my mind for the last three days.
Over the weekend, my partner and his family did some research into gastroschisis. I have only just summoned the courage to look for myself and I'm glad I have. Your site has uplifted my spirits and has helped me gain a positive outlook. For that, I wish to thank you sincerely, mother to mother.
I have an appointment with the Fetal Medicine specialists tomorrow (Tuesday, NZ time) and thanks to you, I have an idea of what to expect. Rather than being afraid, I can now focus on being positive and strong for my little person.
Thank you again for sharing your story with the world.
I woke up one morning and decided to do some research on the problem I had when I was pregnant. I decided to write this to someone to make them feel their situation may not be as bad as it seems.
Gosh, as I read these letters it brings me back to November 25, 1988. My daughter, Sarah, too had gastroschsis. I was 17 when I got pregnant. I told my doctor that I wanted an ultrasound and he told me "no Danell, we don't do them unless we suspect something is wrong". Well, that was not a good enough answer for me. Finally he told me I could have one at 6 months pregnant. Sure good thing I did. From then on, everything was a mess. I had to go to Ann Arbor for testing and more ultrasounds, lots of them. Well, when Sarah~belle was ready to be born, at 30 weeks gestation, I was to be flown to ann arbor. They told my doctor they didn't have any room for us!!!!! Imagine that!!!!!!! My doctor found another place for us to go. Sparrow hospital in Lansing, michigan was the place that took us. Helicopter ready, off we went........
And how scared I was. Now I was 18 and gone to who knows where. I remember the medicine they had me on made me want to get up and run around, and sleep all at once. I also had very blurry vision.
I was in the hospital for 2 weeks before Sarah was born. I got out of the hospital for one day, and the next day I went back into Labor and back to the hospital.
As soon as Sarah was born, they took her right away, I didn't even get to see her. Well, they did take me to her when I became ballestic about not seeing her. The first sight I got of my baby, she was in a plastic zip-lock baggie with her intestines wrapped in damp gauze. I did not know she would be in a bag. That was horrible!!!!!!! She was born cecerean and weighed 4 pounds, 4 ounces
My Sarah was in the hospital for 4 weeks, to the day.
We went through so much that 4 weeks. But we did get through it, slowly, it seemed. She couldn't eat, I couldn't hold her, but I did get to touch her in her little isolette. She eventually graduated from the very critical to intermediate. We got to take her home on Christmas Eve that year. That was the best christmas!
Now, Sarah is 19, graduated from high school, going to college and a full time job. YEAH!
She was a very typical little girl. We had her in dance class for years. She could bend every which way.
She has never had any problems since she was in the hospital. The doctor did say, however, if she has a belly ache anywhere, to bring her in, as "we don't know where everything has actually settled in to place". That never came up, no belly ache.
I have lots of pictures of her belly. She does not have a belly button, only a scar. The doctors said they can give her a belly button with surgery, but Sarah doesen't want any of that. She's proud with what she has.
As you can plainly see, my daughter, Sarah, is MY hero!
June 28, 2010
Sarah is now 21 1/2 years old. We found out a couple months ago that she's pregnant. Today she's 15 weeks 1 day along, and starting to show. Our doctor says there is almost no chance of her having a baby with gastroschsis, but I am terrified. Sarah wonders if her scar is going to "pop" open, lol.
I wrote you on 1/13/2010 at that time my baby girl Izabella "Bella" born on 10/01/2009 was still on the hospital but fortunately she went home on February 10, 2010; the day before was my husband's birthday and the next day was my. Every night when she goes to sleep I thank God for giving me the opportunity to be her mom and the strengths to never give up. Now she eats what a regular baby would eat; chicken, bananas, apple sauce, cereal, etc and drinks Neocate 27 calories 4.5 oz every 3 hours. She is a happy baby and looks like nothing happened to her.
I want to tell to all the moms that just find out that their baby is a gastroschisis baby not to give up on them please, the moment they were implanted in our womb they are our babies no matter how they come, God is the only one who will decide on their lives. Is not easy to have a baby like ours, many times we might say to our selves "what was it that I did wrong?" and get crazy looking for answers that are never found but never think that God might be just proving us. I am only 26 and never tough this would happen to me. We were so happy when we found out I was pregnant, and couldn't wait to have my baby with us. I wanted her so bad that when I found out that she was going to be born with gastroschisis I wanted to die, I cried every day until I had a dream with her, I didn't know if the baby was going to be a boy or a girl but in my dream there she was smiling to me. Since then I said to my self "I would never give up on my baby and would do everything for her to be ok"
Thank you Liza, thank you so much for this website!!!
What a wonderfully informative site and I love the way it is written without all the unnecessary emotion and with all the facts. Well done!
I would like to share our story and this is from a Granny's point of view!
Murray was diagnosed with gastroschisis in Meka's 23rd week. What a shock it was. We had never heard of this before and no-one, initially, took the time to tell Leeroy and Meka what this meant for the baby. Meka had gone in for a normal check up, to a new gynae, and was told that something didn't look right and was sent off for another scan. When she had the scan done, 2 different assistants came into the room, then the radiologist and all showing, by their facial expressions, that there was something wrong, but no-one was talking. They were then told that the report would go to the gynae, who would give the feedback.
My son arrived at my house in tears as he did not know what it all meant. He didn't know whether the baby would be disabled, whether they would need to terminate the pregnancy or anything else about this condition. I did an internet search and was amazed to see that as many as 1 in 3000 babies are born with gastroschisis.
Meka was moved to a new gynae as the man she was seeing did not feel he was able to deal with this kind of pregnancy. We were also referred to a paediatric surgeon, a Professor Peter Beale and we saw another Professor who looked at all the organs of the baby and confirmed that everything was in exactly the right place, the baby was the correct size, except for a slightly smaller abdominal cavity (which is to be expected) and we were told that Meka should enjoy the rest of her pregnancy although she would need to see the gynae a little more frequently than during a normal pregnancy.
Murray came into this world on the 21st April 2010 and started his little journey. Within 4 days he had the operation to close the hole. Unlike Tyler he did need a ventilator but he coped beautifully, although it is very hard to watch your baby lying like that. We are now on day 20 and he is doing so well. He was moved out of NICU and into High Care yesterday and is now getting 30ml of milk every 3 hours. As soon as he is able to drink 60ml every 3 hours they will let him go home.
I have been allowed to see him for 30 minutes once a week, but not allowed to touch him. I cannot wait for him to get home!!
It has been the most rewarding journey to watch this little soul. We are incredibly fortunate to be in this day and age where this condition has become fairly common and that we have doctors who have the expertise to deal with it.
I would love everyone who is pregnant with a child with gastroschisis to be led to your site, with all the wonderful stories so that they do not spend their pregnancy in despair but enjoy every minute of it and know that the success rate of correcting this condition is really high.
My husband came across your site and I just wanted to say thank you. We found out last Friday at our 18 week ultrasound that our little girl has gastroschisis. We've spent the weekend on the internet looking for more information. Your site has given us the most comprehensive idea of what to expect. It has been a major relief for me to read your story and others. I've forwarded a link to the site to our family and friends since they all have many questions and its hard to have to repeat the information over-and-over. Thank you again!
I just wanted to thank you for starting this site, it is wonderful and supportive to all the mothers to be of a baby with Gastroschisis.
I was 15 when I got pregnant with my beautiful son. I was 14wks along when my Dr. and Radiologist discovered that my young man had Gastroschisis, I was scared to death,for him and I. I was referred to OHSU in Portland Oregon and Dr. Lowenson was amazing and he made my pregnancy still enjoyable and worry free. Dr. Lowenson informed me that Gastroschisis could be accompanied with other complications, so to put my mind at ease he gave me a amniocentesis. About 5 days later I found out that my son was going to be ok.
My son (Caleb) was born on April 9th 1993, I was going to go ahead and have a vaginal birth,but they did a ultra sound and found that not only did my son have lg. and sm. intestines exposed,but also liver. So they took me in for a C-Section and he was born at 9:09am. He weighed 6lbs. 6ozs and was 18in. long. I remember seeing him before the nurses took him out of the operating room and all I remembering seeing was a large mass of intestines laying on top of his little abdomen wrapped in saline soaked wipes. My son was one of the fortunate babies and they were able to put all of his intestines back into his abdomen in 1 surgery. Caleb had a very large hole in his abdomen and lots of room in his abdomen cavity.
Caleb stayed in the NICU for 30days only because he was having trouble eating and keeping down his food, I was able to bring Caleb home on May 9th, although Caleb was still having trouble eating and had to be fed with a gavage tube (15cc every hr) for 30 days.
I loved the nurses at OHSU NICU they were wonderful.
Now 17yrs later I have a very healthy young man and the only sign of a birth abnormality that Caleb shows is he doesn't have a belly button at all, and he has a scar from the gavage tube.
So I just wanted to tell all the parents to be of a Gastroschisis baby, that yes it is scary, and yes it is normal to worry,but don't think the worst and enjoy your pregnancy, cause your baby will be alright and for the most part HEALTHY, and believe me this doesn't slow them down for long.
I wish the best to all of you. If you would or need to talk with someone all of you are welcome to get in touch with me.
Thanks so much Lisa,
I also wanted to Thank Dorenbechers and the Ronald Mcdonald house and in my appreciation for them I donate 300.00 every year out of my tax refunds to their Association.
I want to begin by expressing the relief I felt from visiting your site and reading other parents stories. I am 19 weeks today and yesterday I was told that my baby will be born with Gastroschisis and immediately the doctor performed an Amniocentesis for further diagnosis. I spent the entire day crying and viewing videos on youtube, researching, and crying some more because of what my baby will have to endure. This is my first pregnancy and I haven't ever miscarried, aborted or anything of that nature so I don't understand why this is happening to me. While doing more research late last night I stumbled across this website and all morning I have been reading each subject tab, story and viewing every picture. I read how afraid you were your entire pregnancy and I realized that I don't want to evoke any negative energy around me or my baby by stressing or remaining constantly worried and I definitely want to prevent self blame and depression. And though I am still feeling concerned,tensed and nervous, I trust in God's plan. I don't know why he chose me and my baby or the purpose it will serve but I trust that God knows what's best for us and so I will fight against my weaknesses and the demons that may and try and steer me away from the path that God has set for me to follow. Thanks so much for your encouraging and inspiring website.
My name is Amanda and I am 21 but I was 20 when I got pregnant. On January 21,2010 I had my second baby girl. She was born at 32 weeks with gastroschisis. Not only did we have to deal with her intestines on the outside but we had to deal with her prematurity as well. I found out she was going to be born like this at 16 weeks. I had monthly ultrasounds with a specialist. At 27 weeks she was considered growth restricted which meant she was measuring about 3 weeks behind her due date. After that I received a series of steroids to help her grow and to prepare her for early birth because they thought she may not be getting the nutrients she needed to grow inside my belly and may do better if born. At 31 weeks and 6 days I was 2 centimeters dilated. My ob doc sent me to the hospital to monitor my contractions and the baby to make sure i was not in active labor. I wasnt but i stayed the entire night and the next morning i went straight to my ultrasound specialist to check to baby. The specialist ended up sending me back to the hospital to stay on the monitors and bed rest until i had her. He didnt expect me to have her the next day we, were jus tryin trying to buy time by bed rest an extinsive montioring of the baby. They delived my baby girl via c-section on thursday january 21 at 5:16 pm weighing only 2 lbs 15 oz. I delivered her early because her heart rate was not moving up and down it was jus on rate which meant she was in some kind of distress. If it wouldnt have been for her being breech in the same position for 5 weeks i would have been able to have a vaginal birth. Thankfully I had the steroids beacuse she was able to breathe on her own when born. They took her straight from me and i didnt get to see her until about 2 hours later. i saw her in a really high tech incubator wrapped in a bag for about 5 mins then she went straight to cincinnati childrens hospital. the next day i got a 3 hour pass to go see her but it was very difficult to move around beacuse of the c-section. She had a silo that held her intestines up in the air for 4 days and on the 5th day she had surgery to place them back in. I got down there at 7:15 and they took he rdown for surgrey about 7:40. It took them about 45 mins to prep her and the operating room and the surgery was down around 9:45. All the intestines were back inside and they kept a bandage on her belly for like 3 days. They also kept her in a paralyzed state with a breathing tube in her mouth which made her tounge hang out. That was by far one of the hardest things i ever had to deal with. At exactly 4 weeks old she had her first bowel movement and they next day she started to recieve milk. From birth to 4 weeks she had a picc line iv which she received total parental nutrition (tpn) and that is what she survived off of until she had her first poop. She didnt get any milk for so long because they didnt want to feed her gut if it didnt function right and a poop was the signal that indicated things were moving through. She also had a tube that went in her nose all the way down to her stomach called a repogale and it sucked out all the belly contents which were green and before she had her first poop the contents were clear which also indicated things were moving through the bowel. On the fifth day of her feeds she received 5 ml's an hour via feeding tube, but her belly got hard and bigger so we had to stop her feeds and let her catch up on getting all the gas an poop out. That took about 5 days then we started feeding her again. Since she was born early she had trouble keeping her heart rate up and remembering to breathe but she should have grown out of that about 37 weeks of gestation but she didnt. The docs were stumped but so they decided to push her feeding tube down past her stomach and into her intestines. We got her all the way up to what they considered full feeds for her and the 2nd day of her being at full feeds she was stopping breathing and turning blue and the nurses would have to put a mask on her and pump her lungs to get her to breathe again. That night she was having these none breathing spells more frequent than others so the docs took an x-ray of her belly and confirmed she had an infection call necrotizing entercolitis(NEC) which is when gas gets into the lining of the bowel walls. It was pretty bad an the infection put her back on the ventilatior and she was so sick she wasnt even moving when they were sticking her with ivs. They also stopped her feeding again. We kept her on a strict course of antibiotics and by the 3rd day she was feeling better but we kept her on them for 12 days. Last friday March 26, 2010 the docs decided to give her a bottle and she how she would do instead of a feeding tube. She took almost an ounce her first feeding. She is feeding very well now by bottle and hopefully she will be home soon as long as we have no more set backs. It has been a long 10 weeks with my little girl Amarie Rose and it doesnt help that i have 18 month old little girl named Autumn at home either. Thankfully I have alot of support from my mother, my boyfriend who both my daughters are from, his mother, and my cousin. Even though its been a long time it makes it all worth it to see Amarie doing well and smiling and drinkin from a bottle with no feeding tubes !! I will send an update with pictures when i bring her home. Also for all the moms wondering what there belly will look like i will send pic of that to. Amarie had a large opening because she was so small but her scar is the size of a nickle on her belly and it indents like a little belly button. As of Monday March 29,2010 she weighs 6 lbs 5 oz.
Lisa: While serving the web I discovered your website. Boy do I wish I had found this 4 1/2 years ago. My daughter found out at 17 weeks pregnant that her baby girl had gastroschisis. At the time they could not tell us how bad it was. They said we had to wait until she was born. My daughter was married but only 20 years old at the time so naturally her father and I were very concerned for both her and the baby. Our little miracle baby was born on January 17, 2006 at the University of Maryland Medical Center. We live 3 hours from the hospital. Madison was whisked away immediately after birth for her first surgery. Over the course of the next 31 days she went to the operating room 9 times and spent her time hooked up to an array of machines. I had to return to work within a few days of her birth. We are from a very rural area and the hospital is in the city of Baltimore. I was fortunate that my employer allowed me to adjust me schedule to spend time at the hospital. I would go to work at 4 a.m. and work until noon and then make the 3 hour drive to the hospital to check on my girls. I would stay at the hospital until 8 or 9, leave cry all the way home and the get up the next morning and do it all over again. I would do it again today!!! When we finally got to bring her home she weighed 4 lbs 7 oz. She is now 4 years old and the love of our life. She was left with a small scar and a "new" belly button but seems no worse for the where. We tell her her scar is there because that is where the angels kissed her when she left heaven to come to be with us. She sees her doctors on a regular basis but has had no complications since being released from the hospital. I have attached a picture of her when she was 3 months old (take notice the clothes she is wearing in this picture are premie clothes) and a picture of her on her 4th birthday. She is still small for her age however she has small features so I don't think she was meant to be a "big" person anyway. She is not delayed in any way. To the parents and grandparents out there that are going through this, it is one of the most difficult journey's you will ever take however the results are unbelievable. Having seen the strength of such a small person truely gave me strength. Everyday when I look at her I thank god for her and the doctors that were able to fix her. She is definitely our little angle. Thank you for providing a space for all of us to share our stories.
My daughter Emily was born on 7-13-04 with Gastroschisis. When she was 10 days old we had a scare of necrotizing enterocolitis (NEC) and she had to have blood. She was finally released from the hospital 5 weeks later. This is not why I'm writing to you today. On 2-28-10 Emily (now 5yrs old) woke up screaming, crying, and throwing up. I didn't know what was wrong with her so I took her to the ER. They did an X-ray on her and found something (they thought was a tumor) obstructing her intestines. They immediately did a CAT Scan and still couldn't find the obstruction so we were transported a St. Francis Hospital in Tulsa for emergency surgery. Once we reached the children's ER the pediatrician on call spoke with us and said he was calling a surgeon. Once the surgeon got there he looked at the X-ray and the CAT Scan and told me he couldn't really see anything from the scans so he was going to cut her open and see what he finds. Turns out her small intestines were all twisted together and had cut off circulation. They removed half her small intestines so she now has 90cm instead of 180cm. I don't live in a part of the state that has specialist so I have just been taking her to a regular pediatrician since she was born but I remind them constantly that she was born with Gastroschisis but apparently that wasn't good enough or they would have caught this. If your child isn't gaining weight like you think they should or is complaining of stomach aches at dinner time don't blow it off and think they don't want to eat dinner they may have something going on. I urge you to ask your pediatrician to keep a check on your children's intestines. I had no idea this could happen and thought everything was fine.
My sweet Gavin Reed was born with gastroschisis 09/05/04. He is now a healthy 5 year old normal boy! My husband and I found out about his condition when we went to find out if he was a boy or girl. It was so scary. We were sent to the Medical University of South Carolina Charleston(they are wonderfull by the way). Come to find out it's not as rare as we thought it was. They say the abdomen closes up at 10 weeks of pregnacy, I often wonder if it was because I had a dental xray on my 10th week (I was double sheilded) but I can't help but blame myself. Gavin was born naturally at 36 weeks when I went into labor. It was really hard we didnt get to see him until he was in a incubator of some sort. About 30 minutes or so after he was delivered they weeled him by my room on the way down to surgery so I could see my precious angel. He was in surgery about 4 hours, we were told it was rare to get all back in at once. My child is proof that God is good and with prayer anything is possible. Everything went back in at once and praise the Lord my baby only had to be there 11 days! I hope this story is helpful to some parents out there in the same situation. Just know it's not the end of the world, it's only the begining, have faith in the good Lord and just know he is just a prayer away.
Hi Lisa! I just thought Id tell you thank you for your support during my pregnacy. I had the little girl with gastroschisis. She had her surgury an hour after birth, and fortunatley they repaired everything in that one operation. She did so well with the process, she had no set backs like throwing up or blockages or anything. She was in the NICU for 7 weeks. The day she turned 7wks we got to bring her home. What was the worst part of it all is that my 3yr old daughter wasnt allowed in the hospital at all, much less the NICU, because of the swine flu. So we had to leave her with family to go visit the baby everyday! It was a long hard road, but I feel that it made us stronger as a family. I have so much to be thankful for! Olivia, the baby, is almost 6 months old now & doing just fine! Thanks again for sharing your story with me and giving me encouragement!
I sent you my baby girl's story of gastroschisis a couple weeks ago and said I would send an update so here it is.
Addyson Ryleigh was discharged from NICU yesterday at 3pm and is doing wonderful. She has a check up with the pediatrician on Monday and the surgeon in a couple of months, but other than that she is a healthy little girl! Addyson is up to 7lbs 5oz now which is a whole pound from birth. She spent exactly 4 weeks in NICU and had no complications at all. Now she eats about 3oz every 3-4 hours and it goes through just like it should.
To all the parents that are experiencing this, have experienced it, or are about to experience it:
Have faith! It is a very difficult thing for us as parents to sit and watch our babies go through, but remember that the Man upstairs will never give us more than we can handle.
I hope her story along with all the others gives everyone hope and peace of mind. Lisa, thank you for starting this wonderful site for everyone. It helped me tremendously!
Best wishes to everyone,
Jamie, Jason, Isaac and Addyson
Thank you so much Lisa for creating your site. It has helped so much while I was pregnant with my baby girl. She was born at UNC and was only in the hospital for two weeks. If it was not for your site I would have not made it through this bump in the road.
I want to start off by saying thank you for sharing your story. It has really helped me to focus on what to expect with our baby. My husband and I suffered 2 miscarriages. We lost twins in 2008 and another in the beginning of 2009. We found out we were pregnant again in June of 2009. Needless to say, I was scared the whole first trimester. Once I made it past that and the ultrasounds revealed a heartbeat, I relaxed a little. We were really hoping for a girl because we have four boys all together.
We went in at 21 weeks for the ultrasound to find out the sex of the baby and that was when we got the news that she had gastroschisis. We weren't sure what to think and we were scared out of our minds. We were sent to see specialists that would take over the pregnancy from there. The specialists were great to us and told us a little more of what to expect. After meeting with the surgeon and NICU specialists, we relaxed a little. The specialist told me that they would induce around 34-36 weeks after checking her lung maturity via amniocentesis. As time got closer, I found myself worrying more and more. Well, we got through Christmas, and I went in the following Monday with contractions every minute. I hadn't dilated, but I was 50% effaced. They stopped my contractions and put me on bed rest.
I went in on January 5th for the amnio. The results were not what was expected. Her lungs were not ready. So the docs gave me two choices, we could either wait 2 more weeks, which put me at 36 weeks, and they said that more than likely they still wouldn't be ready and would probably make the surgery harder. Our other choice was to get two shots of steroids and hope for the best. We didn't want to have to put the baby through a tougher recovery so we opted for the shots. I went in one week later for the shots and they sent me to labor and delivery the night of the second shot.
That night, they gave me some meds to soften my cervix and they induced the next morning. After they broke my water and I got my epidural, the nurse came in to check me at noon. I was at 3.5. They rolled me on my side and started to get the delivery table ready. I was really starting to feel the pressure so I had the nurse check me again at about 12:20pm and I was fully dilated. The nurse called in the NICU team and the doctor and I pushed for about 5-10 minutes. Addyson was born January 13 at 12:46pm.
We were told to only expect a 4-5 pound baby, but she was 6 pounds 5 ounces and was 18 inches long. They took her immediately to asses her and put the bag around her abdomen. They then brought her back to me all wrapped up and let me hold her for about 5 seconds then tey rushed her off for her surgery. I was scared the whole time. The surgeon came to see me at 4pm to let em know that the surgery went great and she had a lot of room left over after putting everything back inside.
Addyson will be 3 weeks old tomorrow and she is still in NICU. She has made wonderful progress so far. At 6 days old she got her breathing tube out so I finally got to hold her. It was such a relief after not getting to do anything with her after delivery. They had a little trouble getting her pain under control so they started a morphine drip that lasted about 48 hours. Once she got off that, she only had to have a few very small doses of morphine for a couple days after that. Last Tuesday, they removed the repogle and I got to feed her for the first time. They started her off with 10mL of pedialyte for the first 24 hours. Then they were supposed to start half breast milk and half pedialyte the next day, but there was a miscommunication and she received full strength breast milk. Luckily she did okay with that. Addy is now up to 20mL of full strength breast milk and is increasing 5mL every 24 hours. She has had no complications so far and is stooling with the help of enemas. Now all we are waiting for is for her to get up to full volume feedings, then they will remove her PICC line and make sure she continues to gain wait, which she is a little over 7 pounds now, then we get to bring her home.
This is the hardest part for us. We understand they can't throw too much on her at once because if it doesn't go okay, we will take steps backwards. But, it is so hard to sit there and watch her eat her 20mL then be hungry for me and there is nothing we can do. I so desperately want to bring her home. We also have a 4 year old and my husband has to work 6 days a week so I feel as though I am being pulled in a thousand different directions at once. All I want is for my family to all be at home together.
Thank you to everyone for sharing their stories. It has really helped to read other stories and see what other parents have gone though and what to expect. I will give an update when we get to bring her home. Thank You sooooo much!
The word Gastroschisis was strangest and most shocking word I have ever heard. The 1st time I heard was almost 12 years ago.
I was about 17 weeks pregnant with my 1st child. When a lab test came back abnormal and Doctor wanted to ultrasound to see if there was something wrong. The person doing the ultrasound was very to herself and said the doctor would talk to us after she was done. At moment I knew something is wrong. Walking to her office my husband looked at and said no matter what we are having this baby. In the office we were told that she had gastroschisis and form that moment life changed for us. There were multiple ultrasounds and appointment during the week to come. My belly grew bigger and bigger. Then 7 weeks early at an ultrasound she was not acting the way babies should be. So, I was admitted in hospital and was told sometime in the few hours I would have a c-section to have my 1st baby. I knew c-section before but this was not date we had schedule for. Within 10 minutes things went from to worse. Her heart hate dropped and that she was dyeing inside me. They rushed me back to OR. At 4:11 pm on August 11th 1998 Kaelee Shea was born screaming at top of her lungs. You could feel the relief in room after the loud cry but this a look in husband eyes told another story. I saw fear that he was trying to cover up for me. I didn't know at the time but there major of the intestine that outside the body that were black instead of a red color. They wrapped her up and brought her to face so I could kiss her before going to the NICU. She had the biggest eyes I have ever seen and there were dark in color. A few hours later after she was settled and I was feeling better got to see her on that warming bed. They placed her on vent and tubes were coming out of her from everywhere. As you all know 1st time in the NICU is overwhelming. That night the surgeon did surgery and not the one we talked about in his office just few weeks earlier. The black intestines were dead. Her intestine twisted and blood was cut off to part of the intestine. After surgery she had little less 1/2 of small intestine left and ascending and 1/2 transverse removed. She also had iliostomy and G-tube placed in her stomach and given less than 10% chance to make it.
Well she has beaten ever odd set out in front of her. They told us TPN until age 5 or 6 and feeding tubes for a year. While we spent 13 week in NICU and 6 surgeries. She weighed 4 lbs 4 oz at birth and went home at 8 lbs 8 oz. and 17 hours a day of TPN, tube feeding for 12 hrs per day and she got 5 ml bottle every 3 hours. We had many trips 1st 6 weeks in and out of hospital with central line infection. She was only on TPN for 9 months and 3months of tube feeding. Kaelee amazes the Doctors all the time. I am a nurse now and I have with child with Kaelee medical problems and she amazes me.
She is 11 1/2 years old now and the outside world can't tell she bowel problems. No dairy and a lots vitamin supplements. She is gymnastics on a USA gymnastics team (level 7) and workout in the gym about 16 hours per week. She is a great student. Kaelee is oldest and bossiest of three children. She has hopes to go college to compete in gymnastics. So, there hope even in the darkest hour!! The sun will be shinning on the other side!!
Thank having wondering website taht we can our stories
Nichole Werder :)
first of all I want to thank you for the wondeful website you created for all of us. If it wasn't for it I don't know what would I have done, It feels so great to know that I am not the only one facing this situation. My baby girl Izabella "Bella" how my family and I call her was born on 10/01/2009 she was 35 weeks, all her bowel was out, one fallopian tube and the bludder. The doctor told me that they have treated babies with gastrochisis before but this was their first case with all the bowel outside and some other organs. As any mother I was devastated, not knowing how to help or what to do. The only thing I've done all this time since she was born is pray a lot and spend as much time as I can with her, I go see her every single day. She's been 4 months in the hospital already but I still have faith that one of these days we will have her at home. She was born with 3 pound now she is 6 pounds, it has not been an easy path for us, the main problem with her has been the feeding. The first time we tried to feed her she didn't tolerate not even 1cc so they she started with 1/2 cc per hour, she has vomitted several times and gone back to TPN leke when she reached 15 cc per hour she started vomiting and her intestines would swollen therefore she had to go back to IV fluid which at this point is not good since her liver is sick already, we keep trying to increase the volume and now she feeds up to 25cc per hour 6 hrs on 2 off. Three days ago they change the formula to see if she could tolerate a higher calorie one 25 cal. since she was getting only 20 cal/predigestive but unfortuanally she vomitted again so she had to go back to IV fluid, today she started feeding agian but 20 cc per hour and will go up to 25 again. She needs to be feeding at least 60cc every three hours by mouth/bottle and that is our goal. I know soon she will reach there because if she still here with us that means that she wants to grow up with us. Just have faith and never ever give up!!
Hi my name is Kayanna Bennett. I live in Union, Kentucky. I wanted to share a little information with parents about gastroschisis. 19 years ago my baby was diagnosed with gastroschisis. I was only 3 month pregnant. Back then there was not alot of information about this disease. I was told back then there was 1 in 100,00 chance to be carrying a baby with this. There wasn't much information out there. I went to the library looked it up in the encyclopedia. Not much there about it. I was told more than likely the baby would be under weight. So I ate like a pig (healthy). I was told there was a great chance the baby would have other problems, Heart defect, brain defect, kidney problems. More than likely be born prematurely. The baby would be at Childrens Hospital for 6 months to a 1 year. Worst case scenerio. So, I decided to take one day at a time. I prayed alot, ate alot, walked alot. My family prayed alot, my church family prayed alot. Over the next 6 months I did my very best not to worry and honestly I did not. I knew GOD had his hand in this and he knew what he was doing. My due date was August 8, 1991. The schedule ceaseren was to be August 6 1991, since I was having no problems. They already had Childrens Hospital schedule to be at my birthing hospital ready to go on that date, but KYLE WAYNE BENNETT decided to be born on August 2, 1991. Fortunately my contraction were slow, so my doctors had just enough time to have everything ready for Kyle to be born and Childrens hospital was standing by. Again I had know idea what was really going to happen, until the day he was born. My incision is from belly button to very far below. They said they needed to have as much room as possible, as not to put pressure on any of his parts. I said do what you have to. Then he would be wrapped in something like Saran Wrap from the neck to his feet, the reason being, when air comes in contact with the intestional parts they would slowly harden. I thought that was very interesting. Anyway, in the operating room there were about 30 people. Half of those from children Hospital. I'm sure i was more of some kind of study for both the hospitals. I got to see Kyle for about 3 minutes and touch his hand and off he went to childrens hospital with his Daddy & Grandma in an ambulance. Of course I had to be in the hospital for 3 days. In which, I was determined to breast feed him. So they hooked me up to a double breast pump machine right away. I pumped and pumped and they stored my milk, because it would be a while before he could take in any milk. At childrens Kyle would under go his first surgery on his birthday. The surgery was to first remove all the skin away from his intestine. He was in a big giant room with 31 other neonatal babies with all kinds of problems. After I was able to go see him, which was 3 days later. I was in shock. He laid on a little metal bed, with a heating light attached to the bed this was above him. His intestines were wrapped and they were straight up from his belly with medical gause wrapped around the heating lamp above him. This was support for the intestines. He was in medically indused coma. He was hooked up to 16 different machines. I cried and cried. The nurses and doctors assured me he was doing fine. Every other day they would push a little of his intestines into his stomach cavity, watching his heart rate making sure he was able to stand the pressure on his body. You see his lungs developed much bigger than what they should have, which is normal. His lungs developed without all of his intestines inside of him. Within about 2 weeks Kyle had all of his intestines inside of him. They slowing weened him off of Morphine, Lassiks, Oxygen and so much more other stuff I cannot remember. He had a feeding tube through his nose. They slowly weened him off of that and 3 1/2 weeks after his birth I was able to breast feed Kyle. There were days he would be so sick and cry and cry. The nurses would suction mucus out of his stomach and he would feel so much better, that went on for days. I was with him morning and night. I didn't spend the night with him. The nurses reassured me to go him get rest for when he does come home and they were so right. I breast feed Kyle until he was 10 months old. It was for the best, his stomach needed it an so did his immune system.. Kyle came home from Children's Hospital of Cincinnati in 47 Days from his birth. He was considered a STAR Patient. We got around of applause. I made sure everyone knew who made it possible. THE GOOD LORD and the DOCTORS and the NURSES.
KYLE WAYNE BENNETT is now 18 1/2 years old he is 6 foot 3 and weight about 190. He graduated from high school in 2009.
Thank You for Reading if you have any questions please let me know.
I'm Rita from Shanghai, China.
I would like to thank you for your kindness to share your story to all the parents with that condition. I have learned your braveness and your blogs have cheered we up.
My baby was found gastroschisis in the 32nd week of my pregnancy period, both my husband and I could not accept such news when we firstly heard of it, we had never heard of that condition before and we had no idea about that. After several times of ultrasound, the doctors confirmed that diagnosis and they suggested us to find a professional children's hospital to see if could be settled after the baby was born. Then we went several hospitals to talk to the surgeons, and we also searched the web for more and more information about that GASTROSCHISIS. And my husband found your blog yesterday.
Well, my baby is now 36 weeks + 4 days, and will be born around Jan.5 or 6,2010, of course via the Caesarean birth. According to what the surgeons have told us and the descriptions in your blogs, we have make it clear about the surgery operation, and now we have much more confident than before.
I don't know exactly what we will suffer after my baby is born, but we will learn from your experiences and do our best.
I want to say I love your website. I have a 21 month old daughter and she was born with gasroschisis. Things have been great for her up untill the last couple months. She got sooo very constipated that she screamed and cried just to pass gas and she would poop little rocks that you could build a house with. After a month of calling my pediatrition and her surgeoans office everyone just kept telling me that it must be some kind of virus but I just didnt think so. So finally I got her back into Childrens and they put her on Miralax powder once a day to help soffen her stool. It gave her explosive diareha instead. I tried to tell them that but they insisted to keep her on the powder for a month and come back. So I just went back and now he says he doesnt know why she is like that and wants to send her to a gastro intestinal doctor. He says all this is not related to her gastroschisis. I am looking for help and some sanity. Does anyone else have any prolblems like this? Any advice? Please e-mail me @ firstname.lastname@example.org
We are expecting our first child, a boy, in the next 8 weeks. He has mild gastroschisis. I am due February 11th. I am a 27 year old white female, living in Minneapolis, MN. I am wondering if you have come across parents with gastro babies that are intested in finding a chat room or blog to talk about what they are going through? We feel comfortable with the diagnosis, we have done a great deal of research on the topic, and feel we are at a fantastic hospital and Children's hospital for the birth and NICU stay. It is now about preparing ourselves mentally for what is to come that doctor's cannot necessarily help with. We are hoping to deliver vaginally, as there is no known benefit to cesarean unless the baby is not tolerating labor. I agree with what you said about it seeming strange to deliver a baby vaginally with his intestines hanging out. I think the only thing that could help me start to feel more comfortable with the idea of it is to talk to other women who have delivered gastro babies vaginally. To hear their experience and to know that it is ok and will be ok. You know what I mean? Do you have emails of women who have delivered vaginally or know of any way of talking to people about this?
I appreciate your help. Your website helped us tremedously when we first found out in September and it was nice to just re-read through it again now that we know so much more about gastroschisis and our personal situation.
Hello Lisa -
I too would like to thank you for developing your website. My daughter just found out at 18 weeks that her baby girl would be born with this condition and was floored when the specialist told her she "fell within the 10% that don't make it, she should consider termination." After much crying and talking we decided we would rather leave this in God's hands. We now take it day to day and pray all the time! Your website and the other's stories have given me such hope! We are not going to his office again and have an appointment with a Pediatric Surgeon scheduled for Jan. 4th.
This is my first Grandchild and if she arrives on time will be here around March 30th! Thank you again for all the positive stories and your pictures are adorable!
My name is Christie, I'm 22 yrs old and 18 weeks pregnant. Yesterday I was informed my baby boy has Gastroschisis. I have to thank you whole heartedly for creating this site. This is the most terrifying and devastating thing that has ever happened to me. I have spent the last couple hours reading every page of your website and I have cried both sad and happy tears. I look forward to contributing my story to this site within the next 4 months and hopefully I too will have pictures to share of my beautiful baby boy. A few years ago I was diagnosed with Endometriosis and I was told I would probably need some form of IVF treatment or surgery in order to conceive. I have 6 younger siblings and I have spent my whole life taking care of other people's children, desperately wishing for my own someday. When I found out I was pregnant it was the most wonderful and unexpected surprise of my life. So to be told only 10 weeks later that I could lose this precious gift I have waited my whole life for had completely crushed me. I think what you have done, sharing your story in every detail, is such an amazing contribution. A friend told me she found your site and suggested it and I am so glad I have spent the last 2 hours reading about your gorgeous son. I just wanted to tell you how much hope you have given me and really thank you for that. I am so happy for you and your family and Ty looks like such a happy, healthy boy. I plan on being a frequent visitor to your site and reading everyone's stories. Thank you again, so much.
my daughter was born 4/28/08 one month early with gastroschisis. we found out around 17 weeks that she had a hole in her belly and her intestines were out. It was devastating.There was no back door to exit the doctors office so I had to walk through the crowded lobby just sobbing and I came home and cried the rest of the day. I spent the rest of my pregnancy learning as much as i could on the disease and looking at actual photos to prepare myself for what I would see when she was born and found out all the possible complications. Which I have to say is a great thing to do. We spent 4mos in the nicu at chapel hill.
Keira was born in greenville, nc because unc was 3 hrs away we could not make it there to deliver. The doctors wanted to cut away all of her bowel because they thought it was dead. she actually had stooled in utero and the black melconuim made her intestines look dead. Fortunatley, unc told them to wait and just send her to them. They realized when she had arrived she had no intestinal damage at all. We were so happy. Prognosis was great. The dr's a unc told us she'd be out in 8 weeks but that never happened. One thing about my daughter that confused the doctors is that she was milk intolerant. once they started feedings she was malabsorbing which is common with gastro babies.. The milk intolerance put us on the fast track to many chain reactions of problems that lead us to stay in the nicu for 4mos. After being ng feed breast milk that she wasnt tolerating she came down with nec. i can not spell what that stands for. its where gas gets trapped in the intestines and cant pass and the stomach swells, the stomach has to be suction to keep pressure down. We purservered and she got better. Before she got to a full feed she came down with blood infection in her brovaic the line where she recieved her medicine and tpn. We spent time in isolation because disease control misread her tests and thought she had mrsa. We had a lumbar tap done after the blood infection to make sure she didnt have menengitis..scarry. Finally after all the tubes constantly remaining in my daughters throat she ended up with reflux which caused her to not want to eat and started showing signs of failure to thrive. this was the hardest. They were telling me my daughter needed another surgery to get a gastronomy. which is a tube inserted in the belly for direct feedings. After all we had been through I felt like I was giving up by giving in.It was very hard for me to realize this was best for my daughter. But , the best thing was ...I got to bring her home. My hell was almost over.After surgery they gave her a cathater which is a long tube stitched in the stomach. The first weeks the sight and the skin around it is hard to look at. It always looked like something was wrong the skin tries to close this manmade hole and you have to put cream on it to keep it under control. I thought I was going to go insane.
On a positive note..we put Keira on reglan and prevacid which helped. We feed her in her bouncy chair propped against the couch so it wouldnt move and she was almost sitting straight up and would not move her for 30min after each feed so she wouldnt spit up dut to the reflux. By six months the more crawling and moving she did helped expel her gas that was building up in her stomach and her her refluxed kinda cured on its own. By 9mos we were able to have the g tube removed. The healing process is pretty yucky.You have to keep gauze on it and milk come out of the hole until it heals up.Finally, we have a baby without cables. Cordless babies are so nice. For 9mos most of the time she always hooked to something.Now she is a beautiful 18mos that loves to popsicles and pancakes and hardees biscuits and fruit. We are so blessed to have come this far.None of this was easy and there are still mothers out there that have it far worse than I ever did.I sat in the nicu everyday for 12 hours and got to see more than I wanted. I was so jealous when other babies got to go home and not ours.This will not be an easy journey..but be hopeful and have faith. We went through alot so this wont be easy for most but it will get better. The bigger these babies grow and become more active their digestive tracts can function better.I wish all of you the best of luck and pray for you. Be strong
My name is Sara and I live in South Carolina. I was born with Gastroschisis in 1989. I went through alot when I was born, having more than ten surgeries before I was theree months old. When I was eighteen, I had to have surgery to remove the scar and scar tissue from my stomache because it was causing me alot of internal problems. On top of that, I contracted MRSA while I was in the hospital. But I got better. I now have a pin line scar that runs from the bottom of my breast bone to the top of my pubic area. To all of the parents and soon to be parents out there, have hope. I was born a month prematurely and was only given a twenty percent chance to live. I am now a happy, healthy, engaged twenty year old college student! The technology in the medical field now is far more superior than it was when I was born. Don't feel like this is the end of the world. Have hope.
My love to all who have experienced this,
I just wanted to thank you for the website you created. I am 18 weeks pregnant and found out yesterday when I went to find out the gender of our baby that the baby more than likely has Gastroschisis. We have to go get more tests done at UAB in Birmingham, AL. I was worried sick about this until I looked it up on the internet and found this website. Its helping me deal with it better and thank you again for your story and posting everyone elses stories.
My son was born on 1/9/08 with Gastroschisis. My husband and I found out at my 18 week sonogram. We were devastated. The doctors at the hospital kept telling us that we could terminate the pregnancy. That was not an option for my husband and I. We found a new high risk doctor and within days met with a surgeon at Children's Hospital of Pittsburgh of UPMC. They told us that Gastoschisis was very common. They advised us that they should be able to fix it and that our baby should be able to have a normal, healthy life. I went on line hoping to find a mom like you who had experienced this so that I could at least have someone to identify with. The only thing I was able to find was a video of "Baby Phoenix" on You Tube. That video helped me understand what we had to look forward to.
Ben was born at 10:45 on 1/9/08. He was immediately taken to Children's and into surgery. The next morning I got released from the hospital and went to my sons side. Let me tell you NOTHING prepares you to see your baby like that. They were not able to put all of his intestines back in so some were still out and in a silo. He was in so much pain that they were unable to bath him and his hair was still caked with blood from being born. They asked me not to touch him because of how uncomfortable he was. That was SOOOO HARD. I felt helpless. He had hic-ups all the time and he would wince in pain. They had him connected to various pain killers included morphine and fentionol which is synthetic heroin. He was only able to wear a diaper and had to stay under a warmer so his body temperature would not drop. He was also on a ventilator. He did not have any trouble breathing and the doctors told me this was only because he was so heavily medicated they didn't want him to forget to breath. Over the next week they slowly started to put his intestines back in his belly. He had a second surgery to close his belly. The next day I finally got to hold my baby. Like you we got used to cudgeling all the wires and cords. Ben was able to come home after six weeks, four of which were in the NICU. That was the hardest time. Not only because Ben was in so much pain while he was in there but because when he started getting better there were always babies that were not. My advise to anyone that knows they are going to have a baby that will need a stay in the NICU is to take a tour and get prepared to be emotionally exhausted.
Ben is now 21 months and is very healthy. Other than his belly button being a little flat, and a small scar from his borviac, you would never have guessed what hes been through.
Ben was formula feed Pregestimil. This formula is EXPENSIVE. We did not qualify for WIC and this formula was not covered by our insurance.I still have 15 cans left and will send them to anyone who does not qualify for WIC and does not have insurance that covers it. All you'll need to pay for is the shipping. They do not expire until July 2010. If interested or if you have any questions please e-mail me at email@example.com
Good Luck to all who read this,
I just wanted to thank you so much for taking the time to set up this website and educate people who are unfamiliar with this condition. My son and his girlfriend are expecting their first child in 01/2010, we just found out that the baby has gastroschisis. We didn't even know what gastroschisis was until we researched it on the computer. This will be my first grandchild so you can imagine that I am scared but I am trying to being strong for my son. They are both young so they were not able to really understand what will be occuring after the birth of their child. When I found your website I sat them down and showed them your site, the pictures really helped them to know what to expect.
I am glad that your son is doing so well and I am hopeful that my grandchild will do the same. They are truly a gift from GOD.
Thanks so much!
Did anyone notice that babies born with this condition are usually white, with young mothers. and a good portion of the babies have Irish features, pale, red or blonde hair, light eyes. Maybe we have a predisposition?
hmmmm, just thinking. I had it, and all those things apply to my situation. contact me if you want information, or pictures of my healed scars or anything.
Hi Lisa my name is Jocelyn and I'm 17 years old. I'm a mommy-to-be and my due date is March.09.2010. My baby was diagnosed with gastroschisis. I went online to find more info, I found your site and I was very happy to know that I wasn't the only expecting woman with this problem. My first ultrasound was done Oct 1st (my B-day) and I was so happy. After everything was done I was so happy when the nurse told me that my baby was perfect and that everything seemed well. That same day I was called in by that same nurse and told me that I had to come in the next day to review some test results. All my test results were already reviewed with me the week before. I asked her specifically what test was the one we were reviewing she told me it was my sonogram. I was so worried. She told me there was nothing for me to worry about. She told me "as a matter of fact I want you to enjoy your weekend so just please come in on Monday". I said ok. I thought about it and said HELL NO!!! We are talking about my baby here. I woke up the next day and went to the clinic. The mid-wife took so long to call me but she finally told me what was going on. She said that the sonogram I had done the day before wasn't clear enough to see what was wrong and that she scheduled me an appointment for an ultrasound at Bellevue Hospital. I was worried because she couldn't see clearly what was the problem. My appointment was scheduled for Oct.9th. Days went by and I was still worried because I didn't know what was wrong. The day was finally here. We were finally called in and I was a little more relaxed because I was finally going to know what was wrong. The doctor told me that my baby had Gastroschisis. I was scared I didn't know what was "GASTROSCHISIS". The doctor started explaining everything that was going on and told me all complications and almost everything that was going to happen after I gave birth to the baby. I was calmed since they told me that there was a 95% chance for the baby to be fine after birth. The doctor gave me an appointment to see the genetics counselor. The counselor gave us allot of advise and took us out of thoughts. My boyfriend is really happy to know that other than our baby having gastroschisis everything else is fine with him/her. lol THANK GOD! Thanks to Lisa's page I was able to see how exactly things work with all this surgery thing with the baby. Lisa you have a wonderful baby god bless. Hopefully my baby has the same luck your baby did. I'm looking forward to get advise from anybody that is reading this right now.
Jocelyn and Lee
Just wanted to say thanks for creating your site, it really is a great source of info and perspective for parents... as well as people like me who had the condition and really didn't know much about it. I feel like I found a community of folks like me who have this "special belly button."
I was born in 1974. My mother had no clue there was any problem with my development prior to delivery as she never had an ultrasound. So she went in assuming all was good. I was born a couple weeks early at low birth weight (about 5 lbs) with a small amount of my intestines outside of my body. I was born in a very small town, so they ambulanced me off to the nearest Children's Hospital. There I had surgery to "put me back together." I was in the hospital for 16 days and came home pretty much like any other newborn...with the exception that I wouldn't do breast feeding as I hadn't learned it at birth and had a special belly button.
From what I understand from my mom and reading your site, my surgery was much different from what babies with gastroschisis go through today. My intestines were put back inside me - literally just pushed back into me and I was sewn up within hours of birth. Leaving me with a circular scar that is about 1 1/2 inches in diameter in place of a belly button... and a 1/2 inch horizontal scar about 3 inches above and to my left of my "belly button" where the feeding tube went in. My mom said I did develop a hernia a few months later from coughing but it was minor enough to not require surgery.
I just wanted to give some hope to the parents who find out that their expected child has gastroschisis. I realize every case is different however, for me, it actually was never a disability or hinderance..... in fact if anything I was proud of my special belly button. I would gladly show it off as a child and even during the adolescent phase it never bothered me one bit. If people asked about it or anything I would tell them that I was born with it open and my intestines out....and that I was pretty happy to believe alive. It's NEVER been a source of embarrassment at all. I've worn bikinis all my life and even tummy revealing shirts when I was young enough. I truly believe this great attitude that I had came from my mom's treatment. She never made me feel like I had a problem... just that I was different and special... and it sunk in at an early age.
I now am 24 weeks pregnant and am very curious to see how this scar tissue will react during pregnancy and after.... appreciate any perspective from others who've been through this.
I'm trying to get families and people affected by gastroschisis commited to the cause. I'm trying to establish a National Fund designated to gastroschisis research. Our sergeon, Dr. Helmrath specializes in this here in NC and researches it when he can. I have established a fund for him and other doctors at UNC Chapel Hill to be able to do more research. So now I just need to get the dollars to back the desire. For right now, if you'd like, please keep in contact with me. You can refer others to my blog angelaverysmommy.blogspot.com and to the fund (listed below) we are currently organizing people and events to benefit the fund, I'm calling it Avery's Angels and I'm hoping to add many different families of "Angels" as well as survivors. My hope is to raise a quarter million by next year but at least get $5,000 in by the end of the year.
With this disease being as prevelent as it is and on the rise I just don't understand why we can't do more for it. I hope you feel the same way.
Kiss your son for me tonight. He is a blessing and a miracle.
Love and blessings
I reached out to you a few months back when our angel was still here.
Unfortunately Avery passed away from truly unexpected complications during his final surgery that was suppose to bring him home.
Driven by the fact that I can't just put a period on the end of my son's life I'm trying to get the gastroschisis community here in North Carolina and throughout the USA rallied. We had our connections through the hospital and with the March of Dimes research National funds and there is nothing for gastroschisis. The disease is on the rise here in NC, 1 out of every 2000 babies is born with the disease and only 90% make it. With so little known about what causes the disease and best treatments I can't sit on my hands and let this just "happen" or just "be."
I've sent you pictures of my angel and I just ask you to look into your heart and knowing that your own child survived and help me and the rest of the mommies of both angels and survivors get together and build a foundation and a means to help all of our babies.
I've maintained a blog about Avery, his story and our days now as parents of an Angel. It's angelaverysmommy.blogspot.com if it can help anyone or you want to learn more about us please pass it on.
Again, my name is Meghan Hall, my son's name is Avery John Rauen. He was born April 14th 2009 and died July 30th. All through my pregnancy they told me that he looked to be the healthiest case they had seen in a while. His death dumbfounded his surgeon and whole medical team. We miss our son terribly but I can't allow this disease to just "happen" and be clouded in mystery. If I lost my son for any reason at all it is to help others. We set up a fund at UNC Chapel Hill hospitals under his name, the information is at the bottom of the email too.
Please contact me with any ideas or resources you may know of.
This is my email or you may call me 919-259-1596.
Love and Blessings
My fiance and I had our son, Avery John, on 4/14/09. He was born with gastroschisis, a disease that affects 1 out of every 2000 babies in the US. He stayed in the NICU for 107 days where he unexpectedly died due to complications from surgery on 7/30.
The medical community still has no idea what causes gastroschisis and 10% of babies die due to the disease. If you would like to help our Avery's life not be in vain donate to the Avery John Rauen Research Memorial Fund through Cutler Andrews at 919-843-7648 or firstname.lastname@example.org
If you can't make a monetary donation, please donate blood and/or plasma. 1 adult donation of plasma/platelets saves 12 babies.
To learn more, visit: angelaverysmommy.blogspot.com
"Love all, trust a few, do wrong to none; be able for thine enemy rather in power than use; and keep thy friend under thine own life's key; be checked for silence, but never taxed for speech" All's Well That Ends Well, I:2 William Shakespeare
Hello everyone, my name is Karla im 19 years old and delivered a baby with gastroschisis on July 6th 2009. On April 18th 2009 was the day we would find out the sex of my baby. My boyfriend and I were so excited to find out. I was currently 5 months pregnant. When we arrived for our appointment, the waiting till seemed endless. As we were called back, the ultrasound tech was waiting for us already. The anticipation was KILLING me. I honestly could not wait to see my sweet little nugger. After a good 10min of the tech observing my baby, she FINALLY showed me the screen. She happily announcing that he was nice and healthy perfectly fine :) and that he was a BOY! :) My boyfriend was extatic. We asked her if everything looked great she said YES. Well she left the room, came back with the doctor and was like, "When every you asked me if everything was ok, it was, your baby is healthy, measuring right, but i noticed something near his tummy, i figured it was a hand, but i kept scanning...and scanning, figuring it would move, but it didnt." So thats when the doctor says, it appears that your baby has some bowel outside his belly. My heart drop to my feet. I started to shake, felt nauseous, terrified. A thousand things went through my mind. And yet at this point i wasnt crying, just listening. He explained that it could be gastroschisis and that i would need to see a specialist from here on out. I was now considered high risk. Great. After they walked out of the room, the tears started to build up and BAMB, the flood started. I could not control myself. I that i did something wrong. I was guilty for not taking my prenatals and I thought that was it. I hadnt yet gave birth and I already was a horrible mother. Time stopped for me. Everything changed. This precious baby that I was carring inside my tummy, was not "normal." Not that, that EVER matter. I would love any baby of mine regardless. But to think that you out of all people, out of that slight percentage, you were the chosen one. Zeke was positive through the entire thing. He tried to calm my nerves and tried(key word tried) to comfort me. We went to see the specialist as directed. Every appointment after the other went great. No dilation, no complications and baby healthy as can be. Due Date came. I was scheduled for my c-section on July 6th at 7am and I needed to be there at 5:30am. Now let me tell ya, the night before was nerve recking. I only got 3hrs of sleep!! :p I just could not wait to me my sweet baby, regardless of what condition he was in. That was the farthest thing from my mind. Well we arrive to the hostital that was 1hr away. Got checked in, IVs in, and ready for surgery. Im telling you time could not have gone any faster. But it did. ha. In to the OR we go, baby Ethan Ezequiel Crawford was born July 6th 2009 at 7:53am...with gastroschisis. I wasnt able to see him at all while in the OR, they put him in the sterolized bag and my boyfriend was only able to snap 2 pics of him and off they went with him to the NICU where we was awaited my a staff of nurses, his surgereon, and the neonatologists. After they stapled my back up, i waited in recovery for 1 1/2 hrs. When i was being wheeled back to my room, we made a stop to the NICU where i got to see my baby for the first time. His intestines were placed in a cylo and he was crying the whole time i was there. I couldnt stop crying with him. I couldnt not see him in the state he was in. It broke me into a million pieces. As i recovered i continued to visit my baby in the NICU, the surgeon just let the intestines go in with gravity and slowly pushed some in. Time came for me to leave the hospital and i could not come to terms with myself at this point. I was leaving without my baby. I knew that, thats whats best. But the empty hole soon grew larger. On the 7th day of birth, he had his surgery. It went fabulous! When we were called back to see him, he had coughed his breathing tube out. They didnt want to put him in any more discomfort since we was breathing pretty well, according to them. But to me, he looked horrible. Like he was FIGHTING for a breath each time. I started crying uncontrollably and could not watch him go through this. After a and hour he was stabalized and doing much better. From then on out it was smooth sailing he was able to feed about a week after and was recovering well without any complications. The nurses love him and just like a previous poster, they all wanted him for their patient :) Through all the hard times , my sweet little Ethan was a trooper. How strong he was, how brave, and here I was as his mother on the side lines, crumbling into pieces as i watched him cry because of pain, hunger, and god knows what else. Like i mentioned above, he recovered quickly and we were able to go home after 3 1/2 weeks. He went home on breastmilk and pregestimil. My milk supply was slow low from the start, that he was never satisfied. So we substatuted with pregestimil. He hated that! And wouldnt eat it. So i could his prediatrician and he said it was fine for him to be switched for enfamil with iron. Well 2 days later, he got really bad diarriah. To were it was so liquified that it literally soaked into the diaper. He was then sent back into NICU because he was really sick. They stopped feeding. He had lost so much weight at this point. Close to his birth weight at 4lbs 5oz and he left at 5lbs 3oz. Over night, he lost about 4oz. They immediately hooked him to IVs, monitors, the whole nine yards. They still did not know what was wrong with him. They figured it was the formula that gave him a reaction because it all start since then. He had blood in his stool. They did labs like every several hours. To the point that he lost so much blood and he was in need of a blood transfucion. I was devastated. At this point furious at the staff because he was so no where near his current condition and now he needs blood?!? UGH. One word, frustration. Days, weeks, went by and my baby finally recovery. A whole other month spent in NICU. But he recovered from his set back and was able to go home on August 31st of 2009. And I am happy to annouce that he is doing great and gain weight like a champ. My little guy is my hero and me as his mother look up to him for his bravery. Kuddos to all the infants, children, and adults that had to endure this devastating defection. And first and foremost that God our Father each and every day of our lives that it was something that was repairable. That you so much Lisa for this site, you have no idea how long i searched for a blog of some sort so I could connect with parents in my situation. Your little guy has come a long way and is such a cutie :) Thank you once again and God Bless you and your family.
PS: I would love to find out about future expectations with children that had this condition. Like were there certain foods that made eating difficult or uncomfortable. Or If everything was just completely normal. Email me email@example.com
Hello Lisa My name is Sonia Elias, i had a baby with gastroschisis on 10/24/2007, he is my 3rd baby but he was that baby with this problem, i went to labor and deliver my due date was 11/20/2007 but he was born early that only thing about him it was that did not know about his problem we find out that day i deliver it was very scary i did not know about this problem no clue what this was i thougth he was going to died but thank god i deliver at UCSF they have that best team there he had 2surgeries he had colon repair and his intestine were in silicon for a week everyday they were pushing them inside after a week they close that and did a colon repair his now almost 2yrs he is really a sweet pie but also when i was 18 weeks they did ultrasound and they told me he had two cyst in his brain and that he was a down symdrom baby but they never told me about his gastrochisis but after he was born he was not down symdrom and his two cyst disapeer he is now a normal baby thank you for this web site is really helpfull.
I found out that my child had gastroschisis on Oct. 31, 2008. It has to be one of the worst day of my life. My husband is in the Marine Corps so after we found out of course I was left alone and my husband had to go back to work. I just remember thinking why does this have to happen to us. Well after the shock of it I got on the internet and looked up everything I could and found that I was not the only one in the world with this happening to them, I thought for sure I was. Well then we find out that my husband will be deploying to Afghanistan in March. I was scared to death as I was not due till April 5. Well we went on and I had a great pregnancy and my son was healthy and growing and developing just like he should. Well January came around and I was having alot of pain and of course my husband was gone to the field and I was alone so I went to the ER becasue something was not right and I had a severe kidney infection so drs gave me some meds a nd sent me home. Well a week later I was packing my stuff and moving back home to my parents. Well I went into labor on March 18 and called my husband that morning and said the drs think our baby would be there by that night so he went to the nearest airport and got on a plane from NC to TN as fast as he could. My mom took me to the hospital at 10:30pm, my husband arrived around 11:45pm and our son was born at 2:35am. I had no pain meds or anything. I did this because I was told if I had an Epidural then I would not be able to go see my son for 48 hours and that was not worth it to me. After my son Kaleb was cleaned and put into a bag to his armpits I was able to hold him for a minute and so was my husband and then my husband went with Kaleb to the childrens hospital and I had to go to my room. I was at the NICU at 4:45am to see my son. He weighted 5lbs 14oz. so his belly was to tiny to fit everything back inside without hurtin g him. The drs decided to put on a silo. He was in the silo fo r a week then they went in and closed the hole in his belly. We then had to wait for a dirty diaper. And a little of a week later he was beginning to eat and 5 days after that we were going home. April 11, 2009. He spent 23 days in the hospital and that was one of the hardest things to do was sit in his room and look at everything going in and out of your child and it was hard not to be able to just go pick him up. I had to spend a week there alone and I did alot of thinking while my husband was back at work and we became closer than ever because of this. Kaleb is my blessing from heaven and he is just amazing. If you saw him today out in public you would never know that anything was ever wrong to begin with. He is almost 5 months old now and weights 19 lbs. His daddy is in afghanistan and will be home soon so we can start our lives together as a family of 3. There is hope that things will go the way you think they might a nd then sometimes it dont. Just remember things happen for a reason and you might not be able to explain why but things have a purpose. To who ever is reading and you are going through the same...Things will get better just give them time, and keep your head up.
Hi my name is Carlishia. No im not a mother-to-be but I am a freshman in college and I was born with Gastroschisis. I am my mother's 4th child out of 5. When my mother was pregnant with me we were living in Quitman,GA. She went to the doctor as a regular check-up when the doctors told her that something was wrong with her baby girl. They told her that they saw a hole in my stomach and organs on the outside of it. They had no explanation for it so they told my mother that there was no hope and I would be mentally retarded if I survived. My mother is never the type to give up so we then moved to Macon, GA to get more opinions. The doctors there informed my mother that they saw nothing wrong with me, no hole or nothing. Unfortunately, when I was born there was a hole and my intestines were on the outside. The doctors acted very quickly to help my condition including flying a special doctor from Atlanta to my rescue. By the grace of God I am doing fine 18 years later with just minor bowel complications due to the defect. I graduated high school with a 3.3 GPA while I was taking AP and IB courses and I am determined to become a pediatric oncologist due to the death of my youngest sibling from cancer. I am currently enrolled as a full time student with two jobs and no signs of mental retardation( although my mother would say I have my "blonde moments") But I just wanted to share my story as a victim of this birth defect. Thanks:)
Love your website. We found in back in February when we had an ultrasound at 12 weeks and were told our baby had Gastroschisis! We were shocked. According to the doctors we are not the typical parents of a Gastoschisis baby. We are in our thirties with two other children.
Edie Grace was born August 14th 2009 at 36 weeks and two days at 2:45 PM. She had surgery to put her intestines back at 5pm that day. They were able to put all of them back in one shot! Over the last two weeks she has done amazingly well. She amazed all the doctors and nursing staff. Today she hit her alottment for feeds and we are happy to say that she is coming home tomorrow August 27th! We will be picking her up to take her home at 9am tomorrow and are simply estatic!
So for all people faced with this prognosis we wish you luck and hope the best for all your babies!
In July 1981, I delivered a 2 lb 9 oz baby boy. Prior to delivery, there had been no mention of any problems. Much to our surprise, Kristopher was born with gastroschisis. He spent the first three months of his life in Cincinnati Children's. With many prayers and miracles, he came home at just under 5 lbs. Subsequently, we learned he had suffered some scar tissue on the brain; resulting in a mild cerebral palsy on the right side of his body.
He has had no further complications from the initial surgeries; there were 7 major surgeries within the first weeks of life. All organs have functioned properly for him.
Kristopher is 28 years old now. Although, he does not have use of his right hand/arm, he is very successful in society. He went to regular school without special provisions, graduated from high school and obtained an Associate Degree in business administration. He works 40 hours weekly for a large grocery store and helps many others with their yards throughout the summer. Did I mention he owns his own home?
God has placed a passion within him to love on those who are disadvantaged. You see, Kristopher didn't think he was "different". He told everyone "this is how God made me".
Enjoy your special child. They are truly blessings you never imagined you would receive.
What a great web-sit for mom's to read and get helpful information. I was 32 years old with my second child when I found out my son had gastroschisis. I had never heard or know of this condition. Luckily for me I did have a doctor in the family who was able to explain his condition to me. My son was was born in 1992 and spent 32 days at Choc Hospital. He had most of his intestines out , and it took 10 days before they were able to put them back in. He then got a horrible blood infection from the surgery. None of the antibiotics were working and we thought he might die. There happened to be a doctor from Europe who had an experimental antibiotics, and it worked. Once he was released from the hospital we have never had any complication. He does have a 3 inch horizontal scar on his stomach in place of a belly button. It doesn't seem to bother him much, so we don't mention it ..
Jake is now 10 and is a competitive gymnast. He also plays baseball & football, and runs faster then most kids his age.
My heart goes out to all parents who have to endure this, but know that there is hope. I pray for each one of your little angels! May they all be blessed like my perfect little boy. Did I say perfect, well he is a handful energetic pain in my butt, but wouldn't change him for the world!!!
am so hlad the internet has opened this subject for discussion
I was the only one I ever knew of that had been born this way
I decided to live when I heard my adopted parents telling company that
I was not going to live .maybe till 5 then maybe till 12 gheez it is like a hitman hanging on to your life!
I am pleased to tell you I am 55 and the cromizone I am missin is the aging on TEEHEE
I will always be that kid!
I joined gymnastics and was a champ until I broke my leg in 3 places!My scar if you can imagine is not like the others remenber this was 1954 they pumped me full of Vit c drip and took my guts and rubbed them gently and put them back
I think the biggest hurdle is sticky scare tissue I have done all this living on my own no doc's will get involved with me They say I have outlived my condition again HITMAN I wished someone cared and took interest in my condition but instaed they push me away O well live on babies I would like to be a help this has been a lonely road let me tell ya
The last doc says wow this is like an episode of House ...O ya thats what I want to hear ..
I had 3 healthly kids and supposly came from a family that has 10 kids none where born like me .I was told my father was on a ship in marshall islands and the A bombs caused my condition ..but cant get any medical help sooo I will continue to wonder everyday..So glad I found your site and hope I am not boring you .its real exciting to me to find you ..A real person! Best Love and prayers Viki MOnroe. O Here i AM ...
Early in my pregnancy in Dec 1995, I started bleeding for unknown reasons. An ultrasound showed my placenta was separating from my uterus and it also showed our baby had Gastroschisis. We traveled to Pittsburgh PA, 2 hours from our home for another ultrasound, then monthly for ultrasounds. I had to be induced 2 weeks before my due date so that I could deliver in Pittsburgh. Our son [Cameron] was born on July 2, 1996 and taken from Magee Women's Hospital to Children's Hospital in Pittsburgh. His bowels were twisted and the doctors didn't know if they could restore blood flow. His first surgery was to restore blood flow which thankfully was successful. He was then placed in the NICU with his bowels in a "silo" until his bowel could go back into his abdomen completely. He was closed up at 21 days old, that was when we could first hold him. He had another surgery about 2 weeks before he came home due to a kink in the bowel. He was released the end of Sept 1996. It was a long almost 3 months, but well worth the wait. Our son is now 13, happy and healthy. He has a vertical scar on his belly about 4 inches long, a 2.5 inch long horizontal scar on his belly (from fixing the kink), a "homemade" belly button, a scar on his chest from the feeding tube, one on his neck from feeding tube placement and a few scars on his arm from his IV. The older he gets the less the scars are noticeable and the better his "belly button" looks. I suffered from depression for awhile after his birth, about a year total. I refused to consider having more children for fear of the same thing happening. I was 18 when he was born. About 6 years after he was born, I finally decided to face my fears and try to have another baby. When our son was 8, we welcomed our 2nd son, very healthy boy. He is 4 now, and just this past February we welcomed our 3rd son another very healthy boy. It is very hard on parents and very scary, but with proper medical care babies with this defect can live healthy and happy lives. Our son is a miracle and the staff at Children's Hospital in Pittsburgh PA are wonderful! Anyone who wants to email me can at firstname.lastname@example.org, I am willing to help parents in anyway I can to get through this. I wish we had had someone to talk to back then who had been through this.
I just visiting your home-page, and I found it very interesting. I have a grand-child who is waiting a baby whit gastroschisis. The birth is planing to be i November. I will show her your home-page. She is very sad and I would like to show her that your baby-boy is so wonderful.
Sorry for my English.........
Many Hugs to you and your family, and a little kiss to your boy,
from Ulla in Sweden.
First I want to thank you for making a website for people in situations like ours. It really is hard to find as much information as you want or need while going through this. Well currently I am 29 and a half weeks pregnant. Me and my boyfriend first found out our baby had gastroschisis when I was 20 weeks pregnant. We went in for an ultrasound to determine gender, but they couldn't tell us anything. I was then informed we were being transfered to another hospital, one that specializes in high risk pregnancies and could do a more accurate ultrasound. I spent the weekend over worrying and not being sure what was going on with my baby. The appointment came around and that is when I found out he had gastroschisis. I had never heard of it before, I was scared. From then on I began reading and reading everything I could about this birth defect but what I was mostly seeing was people who made it almost full term, had healthy sized babies and recoveries were fairly short. It seemed like something that would just happen and nothing bad from it. Well I was wrong! About 2 weeks ago, I went in for a bi-weekly ultrasound to check up on things and they told me my amniotic fluid was extrememly low. It was 7 point something. They told me I need bed rest and lots and lots of fluids or they will hospitalize me. Then they are now making me go to ultrasound's twice a week and a reg. appt. once a week. They are also worried because my baby has IUGR and currently 1 pound and 13 ounces, when he should be around 2-3. And I have only gained a total of 5 pounds since being pregnant. My belly is also measuring two weeks early. So they gave me two shots of steroids to help boost his lungs in case he makes an appearance soon. They told me pretty frank that I would not be going over 34 weeks. If I do then it's pretty much a miracle. So I am very scared and worried. I hear all these stories but never any of babies being born who are really small and really early. I've heard about them all being over 4-5 pounds. I am scared my son will only be 2-3 pounds, how will he be able to survive all the surgery and labor? If anyone wants to talk please email me: email@example.com
Hi Lisa, My name is Ashley, I am sixteen years old and I just gave birth to a beautiful baby girl last monday [Adelynn Yvonne]!
It's hard to see their life being spent in the nicu. She had her surgery yesterday and was off the venalator within three hours and she was taken off of her oxygen today. I can't believe how beautiful and what a miricle she is.
I found out about her condition within three months of conception, and it's a little harder than you would think, but every day is a new day and you just have to hope for the best!
She was born at 34 weeks via c section. She weighs 4 lbs 15 oz and she is 17.5 inches long.
She is perfect. It will take time, but it is so worth it.
My name is Marcie. I found out about my daughter being born with Gastroschisis by chance. I opted for the optional blood work to check for downs syndrome at 4 months. When my doctor called and said that my alpha fetal protein levels were too high, my heart dropped. Get this, I went to see the genetic counselor that we were referred to and as soon as I had sat down she explained that there was in error in the testing and that she was given the wrong due date. That actually my alpha fetal protein was right. I just so happed to be given an ultrasound while we were there so they could see the sex of the baby. Then, there it was. Clear as day you could see her bowels floating in the fluid. I swear at that moment my life would never be the same. Test after test day after day. On top of that I had oligo. There was enough fluid around her. Actually the lowest you are supposed to be able to carry without being hospitalized is 7cm sq. I carried her with 3. She ended up being born 2 1/2 months early because her heart rate was very unstable. We ended up spending almost a year in local children's hospital. We were told to expect a few months. We ended up having so many unexpected problems. Her silo tore and they had to do surgery and had her comatose for 1 month so that she could heal. Angelina Isabella. That's my baby girl. She went through a lot. At one point during the obstruction situation, she had no heartbeat and they could get her incubated. 5 months in, 4 surgeries and was told after all that we were going to loose her. We called our family in to say goodbyes before her emergency surgery. They doctor on call was telling me that because she swelled in her abdomen so quickly, he was positive that it was Necrotizing Enterocolotis. Which if you're not familiar with that, it is an infection that eats the flesh of the organs. No turning back. Doctor came out and said that it was a blockage after all and was never so happy to be wrong. She was given colostomies, which were later corrected. That's when the hard part came. Trying to get her to feed. Almost seven months in and no milk had been taken. 5 steps forward and 20 back. Finally, almost a year in, 8 surgeries, we able to go home .I have such a greater respect for myself and other Moms. Today is Angelina's birthday. 7/21 my big five year old. They said that she would never be here. You would never know looking at her that she went through more than most do in a lifetime. I read your story and it touched my heart so much. I really do understand what you were going through. Since we left we have had no major issues. Just to watch for blockages again. Because they removed so much of her bowels she was diagnosed with "short gut syndrome". She is very petite. She is a very slow weight gainer. She is 5 today and is only 30 lbs. My son who was 18 months old then treats her like she is made of porcelain. Her name means "Beautiful Angel" in Italian. That she is. Love to send in pictures. I am at work with none saved to this pc.
Hi, my name is Sabrina iam 19 and married I have a 1 and half year old son named Noah who's healthly and handsome, but my husband and I found out I am pregeant again and iam 30 weeks today and we are having another boy sad but happy too I wanted a girl but am glad my son will have another boy to play with, my husband and I just figured we would try for a girl later on in like another 2 or 3 years from now, but then we got the bad news our new son to be has Gastroschisis and I just found out last week my private doctor knew and never told me until I went to my second ultersound somewhere else at Dr.Hills office they told me the bad news my doctor I dont know really if he knew about it he did ultersounds on me so I dont know if he didnt see it which scares me to know hes a doctor and didnt know about it or he just wasnt going to tell me. I very angry at him. I dont know what to say to him I have doctors app. tomorrow. I cryed and cryed and cryed and am still crying, I have seen on tv and heard about it but never knew anybody with it or never thought in a million years something like this could happen to me. I am angry and sad, I just dont know what to do or if I can handle see my baby like that. I dont know if I get to hold him or see him right after hes born or will be on a breathing machine nobody will give me answers I am lost and need help please if you can answer any of my questions I would be so grateful.
P.S. you can email me at firstname.lastname@example.org anytime please and thank you
I am 34 weeks pregnant and got the official diagnosis of our baby's Gastroschisis just last week; however, we've been suspecting it for about a month now. My husband, Joe and I, have been trying to absorb all the information that we possibly can. Our doctors have been wonderful. Last month, my regular OB saw the Gastroschisis in an early ultrasound. I was concerned because I hadn't been gaining a whole lot of weight and thought that the baby (whom we call Blueberry) might be low birth weight as my now 9 year old daughter was at birth. I was glad I asked for the early ultrasound to ask about the weight of Blueberry. When the OB saw the Gastroschisis he referred me to a specialist. The specialist has been wonderful and very attentive. However, that first visit with him was unsuccessful at detecting the Gastroschisis in the ultrasound. He said that our baby was an "uncooperative critter" and that he just didn't see the amount of bowel that my OB had seen the previous week. We went home and spent the next three weeks after thinking that it could possibly be Gastroschisis, but thought that it may be more likely that there was a physical abnormality with the male genitalia. Since then, since the surprise of the baby's sex had been compromised, we refer to him by his name, Trip. Last week we went for my regular monthly OB visit and then the next day, a follow up visit with the specialist. Both doctors finally agreed with what they saw. So in the last week, the specialist has increased my doctor visits to twice a week, doing a BPP at each visit. Today we saw him and he said that there is a small to moderate amount of bowel outside of the abdomen and that there looks to be some dilated bowel. At this point he has said that he isn't sure that we will have to use the silo, although he isn't the surgeon. We see him in about two weeks. So...that's were we are.
It sure helped to read your story on the website. I'm not so much worked up about the fact that my baby has something wrong with him....although I guess to some extent I am....I am more concerned with life after the birth of Trip. I know that I will not be in control of anything and I constantly think of not being able to hold and cuddle him as I have been imagining for the last 8 months. Your story gives me some perspective as a parent and lets me to know to an extent of what to expect.
Any wisdom you can bestow is welcomed. I know that this will be a long road for me and my husband.
Thank you very much,
First I would like to thank you for having a website to help families deal with the same thing I went through 7 years ago. I will never forget the day I got the phone call from my doctors office telling me that my blood test came back positive that I needed to come in for an ultrasound. There is where they found out that my child had gastroschisis. I was sent to a specialist about two hours away from home. There they told me the same thing they have told everyone, I did nothing wrong. I continued seeing the specialist along with my local doctor just in case I couldnt make it two hours when I went in labor. However that never came. I had a doctors appt at 37 weeks, there I told my doctor that I was not feeling her move like normal, they did a stress test and told me that they were gonna take her now. I had an emergency C-Section. She had surgery within an hour after her birth at the childrens hospital across the street. I was unable to see her untill the next day. The surgeon called me right after her procedure and told me that she did great and they were able to get all her intestines back in. However she had a long recovery. She stayed in NICU for two months. We had a very hard time getting her to eat. When she was able to come home she came home with a feeding tube and heart monitor. I cant remember how long she had her feeding tube, but I know it was for months! She is doing great now. They did a good job on making her belly button with her scar. I have included some pictures of my miracle! I also included one of her in a bathing suit so maybe you can see her scar. If anyone would like to know more about my expierence please email me @ email@example.com. She is my only child. I am still scared to have another one due to all her complications. Thanks again for having the support you have on this website.
I am an 18 year old girl born with gastroschisis. I was born 2 and a half months early in 1991. back then this condition was rare. At the time my mother had just turned 20, and had just lost her apartment in Brooklyn. I was in the hospital from march until july becuase of complications, for which they kept me in a medical coma, and nearly 20 surgerys which include trimming the dead tissues, because of the intensity of my defect. I have had countless blood transfusions, and general digestive problems. I was left unable to eat like a regular child for 3 years, and on a strict diet after that. During my surgeries they found i was allergic to the medical mesh they were, back then, testing out. I was badly infected and had to start the processes basically all over again. But years later, scars upon scars later im a relatively healthy 18 year old. I recently found i have a hernia due to abdominal muscle weakness. This Thursday I will be in the hospital to fix that but other than that my life is pretty much normal. And the lack of a belly button is an interesting conversation starter. I have scars on my wrists due to IV's and Scars on my neck and near my Breasts because of breathing machines and feeding tubes. I hope that in the future i will be able to have children, and carry on with a normal life. Good luck to anyone having a child with this condition, and anyone else who shares my scars. <3
hi, the stories here are about parents who have had a child diagnosed with gastroschisis, however, I am a teenage girl who was born with it. Life was almost the same as any other life out there besides the fact that I don't have a belly button. after I was diagnosed, I thought I was exactly like everyone else out there until second grade when scar tissue wrapped around my intestine and I had to get another surgery. I had to get staples in my stomach. (not literally in my stomach but on my lower belly) and some people thought it was cool. I didn't though. I thought it was ugly.
since then though, I havn't had problems. I hope my story will help you with life with your baby if they are diagnosed with this disease. best of wishes.....
Hello Im 15 and i live in ireland i was born with gastroschisis my mom and dad didnt no untill i was born all of my insides were outside i had surgery when i was an hour old i was moved to three differnet hospitals because it was rare back in 1993 i was in hospital for 1 month the doctors told my mam she wouldnt take me home they asked her to donate my orgins and all but here i am and im doing fine i have a 4 inch scare on my belly and i love it :) i am spoiled because i nearly died i am going into collage to study paedreatric nursing so i can save other babies lives just like the doctors and nurses saved mine x
hello my name is amanda my husband and i had a daughter 5 years ago and she was born with gastroschisis. i had a routine ulta sound at 5 months when they discovered it. we were freaked out and didn't no what to do. we went to a fetal maternal specialist once a week to watch the growth of her. the doctor induced labor 1 week early and we had her natural. our daughter went into surgery within one hour of birth. while in surgery the doctors found that her small and large intestine were not connected. they said it was like taking a watermelon and a water hose and sewing it together so they took out a couple feet out and sewed them back together. while she was still in the n.i.c.u she didn't eat we couldn't get her to. at exactly 1 month of age her intetines built up scar tissue on the inside of her body and started backing up so then she had to go to emergency surgery and have a iliosotmy put in. she had 2 blood transfusions. we got to take her home at 2 months of age. she had the iliostomy for 9 months. she still to this day has loose stools but she awsome!!!!! don't let this small set back let you down your son will be okay things just take time to heal...
My name is Selisa and I recently had a baby boy on April 1, 2009. He weighed 7.1 lbs. He also had gastroschisis and they let me know when I was about 3 1/2 months pregnant. It was a total shocker to me, I had gone into the doctor's office because I was going to find out the sex of the baby. I cried for days until I started researching and looking into alot of other peoples cases and their children had turned out fine.
When my baby was born the first thing they told me at the hospital was ..."Well, he might not make it" ... It was one of the worst cases of gastroschisis they had seen yet. His intestines were extremely large. His intestines were so inflamed that they had to make a special silo for him (the bag that covers the intestine while it is being pushed back into the stomach). He had a special surgery just for that, and was able to make it through. A couple of days later I find out that he had a problem with his heart. This was what is called a coarctation of the aorta, i believe thats how it is spelled and what i was told was that the vein that pumps the blood to the lower half of the body was "clamped" in a way that it was not letting enough blood flow down to his legs and needed to be fixed before they started pushing any more of intestine in, because when that is being done the intestines also adds a lot of pressure to the lower part of the body and blood has a hard time going through the bottom half of the body. So he was two weeks old and he had his heart surgery. He went through it well and recovered pretty quickly. By the next week alot of the intestine had been pushed down and was going to be ready for his gastroschisis surgery. I was so excited for all sorts of reasons. When his tummy was finally closed it had been 3 weeks already and I wanted to hold my baby boy. When I first carried him i cried soooo much of happiness. A couple of weeks had gone by and we noticed not much improvement from the fluid coming out of the repogole, it was still green and a very large amount. The doctors kept a good eye on what was going on and ran a few tests on him and decided that they were going to have to re-open the closure and find out what was going on, why things weren't moving through. So, here went surgery number 4. What had happened was that alot of scar tissue had formed between the intestines and the muscles that make the intestines work so it needed to be removed. He recovered extremely quick from that surgery, I was really surprised and glad that he had done so well with it. Now we just needed for the fluid coming out of the repogole to start appearing clear. It took a good while but the repogole was finally removed.
Well today is June 13, 2009 and my baby weighs 12.6 lbs. and is still in the hospital. He has been on TPN for the entire time hes been in the hospital but is being taken off of it slowly since he is taking 17cc of milk an hour on a continuous feed , and as soon as he reaches 18cc they will remove the TPN. Now comes the part where he needs to start drinking from a bottle since he is being fed by the tube through his nose, but its still a little bit more time till they start trying. I am so proud of my baby boy, having gone through 4 major surgeries in three weeks and kept strong through all of them, Thank God. Its been a shock to everyone that he is doing so well since the situation had been so bad at the start. What i cant believe is that throughout this whole time there has not been one day when he doesnt smile... usually i have heard that gastroschisis babys are more irritable and always crying, and believe it or not he hardly ever cries hes mostly all smiles. The nurses at the NICU love taking care of him because hes such a great baby ( at times they fight over who is going to be assigned to him LOL) . Well we're still on our journey and its been a really tough one, but the important thing is that we've stayed positive and strong throughout it. I'm glad that you've made this site, its been so much more helpful to me to see how other parents go through this and how great an outcome they have. Thanks soooo much!
hey my name is Alanna. im 18 years old and im 18 weeks pregnant with my frist child. i just found out a few days ago that my baby boy has gastroschisis, im still kinda in stock about it all, it was alot of news to get, when you expect to have a healthy child... i was wondering if you had any other info for me. ive read everything on your website and thank you so much for putting that all up there. it helps to see that alot of people have gone threw it with their child and they everything turned out okay. And thank you for also putting those pictures up there, i was kinda scared to see what it was going to look like but i think its better that i got to see before the baby is born. if you could get back to me with maybe other info or even just advice. it would be great thanks !
This site is the best site so far to provide all the information a parent whos just had or is pregnant with a baby with gastrochisis......I have been searching for 2 days on the net for information on gastroschisis we was told monday on the 20 weeks scan I was having a little girl and she has gastroschisis and was very upset with what she was telling me we got reffered very quickly to a specialist day before I was 21 weeks a few days ago and she confirmed our lil girl has the condition the day after they made an apointment for the hospital were she will be born so we have to visit there in a few days its all starting to get a little too much this will be my second child as I have a 4 year old boy. I have constantly been crying and quite upset i just want her to be ok I know theres loads of help out there and as every1 keeps telling me not to worry I just cant help it..........I want to think positive but am just so scared. I keep asking my parnter if hes ok and im not so sure he is this will be our first child together as my first isnt his but he is brilliant with him just wish he would open up and speak to me.
Kelly Hall (23)
lots of wishes from finland!
we have three children, girl 20 boys 19 and 15. our 19 years old boy anton, was born with gastroschisis 26.3-90. he was born at 35 weeks and 2 days.
he was 49 cm and weigh 2900 grams. he was born on a monday and had the 2,5 hours surgery the same day. he was eight hours when I saw him the first time. my husband saw him after the birth when they checked anton's heart and breathing.
anton is nice and strong and we are happy to have him. the doctor asked twice if I want abortion. the first time was at the 16 week ultrasound. the second time was when she called the next day to ask if we have thought about the opportunity.
lots of love from
Thank you for making such a fantastic commitment to provide such a terrific information source.
My wife and I found out this week that our 11 week, 4 day baby has gastroschisis.
We meet with the specialists this week, but the diagnosing doctor was suggesting that having such an early diagnosis (he'd never seen one this early) was a blessing as at this stage terminating the pregnancy was still an option, whereas in many cases it is not.
I'm very concious that this is a topic which people from different backgrounds and different countries feel very strongly about and I don't wish to offend in any way. I just get a feeling from my research so far that it is all about people who have made the decision (or had no other option) to proceed with the pregnancy. I wonder how many people (to whom this isn't against their moral or religious beliefs) who had the option of not proceeding, took that option or wish that they had. We're far from giving up, but at this early stage we hate the thought of imposing a life long disability on our child. This sounds very cold when summarised in a single paragraph, but as you know, some straight talking is what's required in order for us to either understand what we're in for or to make a decision otherwise.
In a strange way, it would be easier if there wasn't any choice and that you just start to prepare yourself for some hard times ahead.
Any insight from your experience and stories from others is warmly appreciated. I hope that knowing the joy in your life now, you haven't been offended by the thought of any other scenario in this email. It's just very early days for us and we're thinking through every aspect.
Hi! My name is Jennifer. I am a 22 year old mother to a beautiful little girl Deanna Leigh. She is 2 and a half. We are so excited to welcome her baby sister, Olivia Grace coming this September. Sadly though, we were informed a month ago that she has gastroschisis. I just wanted to thank you from the bottom of my heart for making this website!
I have been going crazy lately trying to educate my husband and myself on whats to come. Today i finally found your website. It has been the most helpful so far. I don't have much experience to share with everyone, but I'll be sure to write later on to share our story with all the others whom it may help! I do have alot of questions still. Id love to be able to have a vaginal birth...all of the doctors so far have said its completely safe and normal for a gastro baby...but i cant help wondering if its the best decision. If anyone else has had a vaginal birth with a gastro baby id love to read your story.
So far the baby is measuring right on scale for her gestation. I'm just praying that she'll continue to grow the way she has been and that we'll carry her to 39 weeks. The specialist made the outlook alot brighter. She told us the defect as of now is only 1cm. How much will that change from now until birth?
I think he hardest thing for us to cope with right now is the fact that we wont be able to hold our newborn...or bring her home for Lord knows how long! That is so hard to think about.
Anyway...anyone who's going through this just keep in mind that the doctors knowledge has come a long way in the past years. Our doctors have assured us that they know exactly how to handle this and that the outcome for 95% of babies with this defect come through it just fine! Look to God for strength, hope, and comfort. Just pray. God has a plan for everyone before were even born. EVERYTHING HAPPENS FOR A REASON!!! We may not understand it, or know what that reason may be yet, but time will tell. Best wishes to all who are experiencing this. My prayers are with you.
Thanks again for this website.
Your website has changed my life forever. At 15 weeks, my fiance found out that our baby was a boy. She also found out that something was not right with the babies belly, and that it could be a umbilical hernia, gastroschisis or omphalocele. It's amazing how, right now, the online dictionary in my browser thinks those 2 words are spelled incorrectly. This is such a stark reminder how little the doctor's know about these conditions. After that sonogram, we were sent to a team of specialists at Winthrop University Hospital in New York. My fiance and I immediately started researching these conditions and became overwhelmed at what we were seeing. There was alot of conflicting information, seemingly from lack of data, on all of the conditions. We made sure to bring a list of questions to this new set of doctors. The specialists have been wonderful, however there was never a clear diagnosis of what the problem was until today. After our 3rd level 2 sonogram at 23 weeks, the doctor has noticed intestine beginning to protrude from the area that has been in question, right next to the baby's belly button on his right side. This clearly indicates our baby will have a gastroschisis at birth and now at least some of our fears can be put to rest. As we quickly approach our third trimester, more and more questions are starting to arise in my mind. We have collected alot of information from various internet sources and it seems like there is much controversy over a regular delivery, and an induced early C-section. I will be sure to document our experience as well as I can and would just like to thank you for providing a resource for parents and loved ones to find ACTUAL stories of this unique and frightening experience. Thank you and God Bless.
My name is Suzanne Hunt. I am a 33 year old female born in 1976 with gastroschisis.
I was hoping to erase some of your fears...
I am the oldest child of four for my mom and dad. I was the ONLY one born with this birth defect. My surgeon told my mom the same thing yours said: nothing you did or did not do.
The medical technology has advanced so FAR since I was born; therefore your son is way way way ahead of the game.
The odds of me beating this was 50/50. The doctors were not sure.
I am preparing to have my "last" surgery. This is #15 for me. I need to find a surgeon to remove my mesh and replace with a new technology. My last surgeon said if I have no complications this new technology will make it where I never have to have a surgery again!
This is a huge prospect for me and I am worried/excited about it.
Feel free to ask me any questions.
You and your family are in my thoughts.
Thanks for listening.
Hello again Lisa,
i guess i gave you very little info on what happened and why. i was supposedly born with gastroschisis because my whole stomach down to the genitalia was open. i was born with double vaginas, bladders, ureturs, and urethreas. both bladders were non-functional as they were hooked up to each kidney individually as well as the ureters and urethreas. with my vagina's one was used for a pull down and then they made an anus as i had none. But what makes my case different is that with cloacal extropy my genitalia was not what other females have. they other vagina is over on the left side and inside one of the two bladders. my opening is so small that the only thing that is able to be inserted is a pedi blood vile. my clitoris was split in two also. on the right side my other bladder releases this mucusy substance since i was born. they have had to blow up the right bladder in order to stop the mucus from drying inside and blocking the flow.(it happened anyway until i was 10 and those were painful procedures) when i was two weeks old they were going to take out my left kidney because they said it was diseased and when they took and x-ray boy was there a BIG surprise for them. my right kidney had atrophied to the size of a vegtable pea. so since then i have lived pretty successfully off just one kidney. the only probs were how to stop the refluxing. well for years i had an open stoma on my left hip and had to were diapers right up to my seventh b-day. right my seventh b-day was spent in 12hr surgeries and they had to do it twice because the artery for the new stoma collapsed. so they next there i was in surgery again but this time for only 3hrs. the surgery was successful and i worn a urostomy bag for 11yrs. i finally had two surgeries in 1993. they first was pelvis because my pubis bone was splayed and needed to be corrected. wasn't corrected completely but i was the first to have this surgery done where there was no broken bones or serious auto accidents. i was not supposed to walk one week after the surgery, but i did and it was pure hell. they said i wouldn't be out of the hospital until late summer or early fall....I showed them...I went to Pt 3 times a day and walked with my walker until i could no longer walk. all in all it was the best time i ever had with the hospital and staff. i had that surgery 2-5-93 and was released on 4-22-93. then nine months later i had what is called indiana pouch surgery. it was a surgery where they use stomach and bowel and since i didn't to much to begin with i was left with what was called short bowel syndrme. i was angry for a long time. couldn't eat or go anywhere without having severe diharrea. so i became a complete hermit. it wasn't until 7yrs later i was able to hold down jobs and be as normal as possible. i don't tell people about me cause when i have in the past i was told they didn't want to catch what i have or their kids. but now i'm on dialysis for 1yr3mths. i won't be able to get a transplant but that's ok. i'm tired of surgeries and the last one i had was in sept.'08 and it was for a small bowel obstruction. it took me until february to recover. so that's my story. i bless you for your website because up to one yr ago i didn't even know about this website and i'm glad that there are wonderful people out there who care and let you know i'm not alone anymore. my address is firstname.lastname@example.org. i hope you share this this story with others. thanks for listening.
My fiance and I wish we would have found your site during our first pregnecy with our baby boy Maddox Burch Brown. We found out at our second Dr visit that our baby had Gastrochisis and we were terrified. We expirenced alot of the same things that you did and your site really tells the story very well. Everything from the NICU to the staff and the feelings you have while going through this stressful process.
Our boy Maddox was born Nov 26, 2008 and didn't come home until Fed 12, 2009. He is doing amazing and are so proud of the little guy. It's amazing how strong they are to go through so much. I'll send a few pictures.
Thank you for your site,
my name's Graca I'm 19 and I'm a new mommy to a beautiful 2 1/2 month old son named Giovanni who had Gastroschisis at birth. We are from the Jacksonville, FL area and our son stayed at Wolfson's Children's Hospital in Jacksonville. We were in the NICU for a total of 2 1/2 weeks even though the doctors expected us to be there for at least 1 1/2 months due to the severity of Giovanni's Gastroschisis. Giovanni was truely a fighter and a miracle baby. He had 2 surgeries, required no feeding tubes, and was breastfeeding by 2 weeks! He did absolutely amazing at the NICU, thanks to the dedicated staff there. however, as soon as we brought him home, he started have some problems that are still present today, and if anyone has ANY advice for me, please feel free to email me @ email@example.com... My son suffers from terrible gas, constipation and reflux. We're not talking about minor gas/constipation/reflux, I mean BAD. He is gassy constantly to the point that he cries and we have tried every remedy we can think of for his gas/constipation: 3 types of Gripewater, Gas X for babies, Mylicon, Tummy Soothers by Gentle Naturals, Little Tummy's and Lactulose by perscription.. nothing works for him... can anyone think of any other remedy? Also, for his reflux we're on Reglan and Ranitidine by perscription. those are helping him somewhat. But the good news is that he's gaining weight, he's 12 lbs now, which is a 6 lb weight gain since birth and he is just the most adorable most precious baby.. I pray for all the parents out there who have had to deal with Gastroschisis and who are dealing with this terrible birth defect as we speak, and I commend you, Lisa, for creating such an informative, inspiring, and hopeful site on Gastroschisis. May God Bless!
My name is Catrina and I'm 33 yrs old and was born with both Gastroschisis and Cloacal Extrophy. I know what you are going through. i was born in Alamogordo, NM in 1975 and was the first child to live with this condition. There was 4 births before mine but they all died within hours or days of birth. I have had 93 operations and still not considered "NORMAL." i was a military phenomenon and many operations that are done today were first done on me. i have become very jaded with the medical commmunity because I felt i was just an experiment gone wrong. many of my birth defect were not corrected as they are today but was told all my life that i was the only one who was born like this. i commend many parents whom have a child born with this birth defect and stand by them and know that they will be precious no matter what. my mother and father have always been my advocates to this day. i do not know what i would have done without them. But for many years they were lied to and told many untrue things which i am only now discovering. my mom through thick and thin was by my side and had to make many difficult decsions. i hope you are a strong advocate for your child and i commend you for your help and GOD BLESS YOU and many parents going though these difficult times. All of you out there ARE my HEROS. Please take care and if you have any questions pleases always feel free. I have come a long way and finally accepted ME. I'm happy and have a wonderful boyfriend and family.
Catrina von Muldau
I am a nursing student at the University of Pennsylvania in Philadelphia. I am in my third year and doing my clinical rotation in the NICU. I may even want to be a NICU nurse when I graduate. I stumbled across your website while looking up research for my care plans. I had a 12 hour clinical on Tuesday where I had two kids with gastroschisis.
I just wanted to tell you that I think your website is amazing. I hope that many parents who are going through this find it. I know that it will make their journey a little bit easier and way less frightening.
I am always amazed by the parents of the kids in the NICU. They are so amazing and so strong. As nurses, we can care and love and give but it's the parents who make the real difference. Know that Tyler made it through his treatment thanks to your love and interaction and involvement in care. Congratulations on making it through your journey and kudos to you for caring enough to help other parents who come after you. Tyler is beautiful and looks like he is doing really well.
Wishing you and your family all the best.
My son Aden was born with gastroschisis on May 24 2004. He weighed 6 lbs. 6 oz. I was only 18 when I had my son. I was so young and scared, My first ideal that something was wrong was at my 5 month ultrasound. The tech came in and did everything she had to do and then she said we have a student here who is going to come in and "practice" on me. She said for my time they would give me more pictures than normal. Well everything happens for a reason, so the student was in the room for about 15 minutes and I could tell by her face that she was seeing something abnormal. She said "uh the ultrasound tech forgot to record a heartbeat, i'm going to have to get her." I thought to myself that's odd, she has been in here for 15 minutes and she is just now saying this. So the tech came back in and said there was something wrong but she could not give me any info. So the next day the doc called and said she needed to se me asap. I didn't know what to expect I was thinking of the worst possible scenario. So we went and she told me that the baby's bowels were on the outside of his belly, my heart sank to my toes, I didn't know what to expect, she had to explain it several times before my brain could process what she was saying. It's almost like the world stopped for a few minutes I could not process what she was saying. They don't teach you about birth defects in sex ed (which I think they should). At 18, or any age for that matter, when you think of having a child you think of a perfect little baby. Never did I imagine that I would have a baby with a birth defect. But I did and everything turned out fine.
Aden had surgery when he was just 2 hours old. I got to see him for literally 30 seconds after he was born. Then it took 12 hours for me to see him again. The first surgery went pretty good they were unable to get all the intestine to go back in so he did have to have another surgery when he was 7 days old. It did turn out that he has no belly button but that didn't matter to me he was perfect and the surgery went as good as it could have. He was in a artificial coma for 3 weeks. I couldn't hold him I could only touch him. He did have a few minor complications, He had trouble feeding and gaining weight, he had a blood clot in his left leg so they gave him a blood thinner and we thought that helped. He did have to have 2 blood transfusions and when they circumcised him he had to have 2 stitches but hey that is minor compared to what he had already been through. Aden got to come home on July 21st of 2004 weighing 7lbs 9 oz he had trouble gaining weight at 9 months old he was still wearing 0-3 month clothing. He was tiny. He puked quite often, and not a normal puke it was a projectile kind of thing. That finally stopped when he was 6 months old.
Well aden is almost 5 years old and completely normal. He finally caught up weight wise. He is in pre k and is doing great he is so energetic. He can spell his name as well as a few 3 letter words. He doesn't care that he doesn't have a belly button.
There is one thing that bothers me. Adens aunt had twin boys in may 07 (james and drake) Baby James also had gastroschisis. It makes me wonder if it is a genetic disorder. She was also 18 when she had her twins. Although I have since had 2 additional children and they are fine.
Thanks for letting me share my story
Jamey from Illinois
What a wonderful service you a rendering for all gastroschsis families. I wish there was something like this when I was pregnant with my son, Harrison, 7 years ago. Here is our story.
Four months into my first pregnancy, blood work and an ultrasound, confirmed that the baby had gastroschisis. My husband and I, and our families were shocked, scared, and upset. My doctor, a wonderful man with very good bedside manner, explained it wasn't my fault and sent me to the best perinatologist office in the area. Our appointment was two weeks away from the initial ultrasound and those two weeks were spent researching anything and everything I could find on gastroschisis. The more I learned, the better I felt. Like they say, knowledge is power.
The team of perinatologists were wonderful. They appreciated the fact that I had educated myself on the defect and we all felt like a team. My pregnancy was as "normal" as a high-risk pregnancy could be. There were a few weeks were the amniotic fluid might be too low for the doctor's likes or I wasn't gaining enough weight (according to them :)). Towards 32 weeks, I went in twice a week for stress tests that indicated I was having contractions, although I wasn't feeling them. I was placed on medication to stop the contractions.
Finally, when I was 35 weeks along, the medication couldn't stop the contractions and I went in to deliver the baby. I delivered him vaginally and he was a whopping 5 pounds and 15 ounces, and 19 1/2 inches long!
He had surgery a few hours after delivery. Thankfully, his intestines were in good shape and they were put in all at once. The doctors also did a fantastic job of making a belly button for him. It has been such a long time ago, so my memory is fuzzy, but I recall him only being on breathing machines for a few days after surgery. I do remember that we got to feed him an actual bottle (of my breast milk) when he was 6 days old. When he was 10 days old, still in the NICU, I was changing his diaper and he pooped all over me. My husband and I were so excited, pooping is what we have been waiting for! Harrison was allowed to come home 2 days later.
Harrison is currently "six and three quarters" (just ask him) and is one of the smartest kids in his first grade class. He is very healthy. He has only had one ear infection and one case of strep throat. Of course, he gets tummy aches now and then, like all children. In fact, just a few days ago he was throwing up. Every time he is sick to his stomach I worry. I do have to admit that he gets sick to his stomach no more than any other child his age though. I suspect that I will always worry about his tummy...it is my right as his mother!!
When Harrison was 3, I had another baby. A very healthy baby girl weighing in at 9 pounds 2 ounces and 21 inches long. This pregnancy was completely normal. I did insist on an ultrasound as soon as possible to rule out gastroschisis and the doctors obliged. The ultrasound showed everything was fine and the doctor told me that even though we hear about sick babies a lot, the majority of pregnancies result in perfectly fine babies.
Some things that helped me during the gastroschisis experience were:
Before having baby:
visiting with the surgeon who was to do the repair
visiting the NICU and neonatologists at the hospital I was to deliver at - nothing can prepare you for the shock of seeing your baby after surgery better than a visit to the NICU
After having the baby:
try not to feel too bad about leaving your baby in the NICU when you have to go home...easier said than done, I know, but it is the best place for your baby and I have to admit it is very rejuvenating to get a full nights sleep - you do not get that experience when you have a "normal" baby
pumping and storing my milk - we rented a great machine for a decent price
bring the comforts of home to the NICU - I taped a picture of my husband and I in his bassinet and my husband bought a small stuffed animal and placed it in there too
After having baby home:
the NICU puts them on a great schedule, enjoy that and stick to it
I went to see a lactation specialist who helped us breastfeed, as my baby was used to a bottle (of course you don't have to nurse, it was just what we decided to do)
go to all of the baby's Dr. Appointments
Enjoy your little miracle!!
(Harrison was born before we invested in a digital camera, so I don't have any of his NICU picks on my computer, this is a picture of Harrison with his little sister taken last year)
For some reason, I decided to Google gastroschesis today. I was born with it and curious to see if there were others. WOW what an awesome site. I have never seen pictures of any other person with it. Your baby is beautiful and the pictures and the stories on here make me want to cry. Your baby is so lucky to have practically no scars on his stomach. WOW! Surgery sure has advanced. I am here to tell you that I survived, I am 29 and was born Jan 17, 1980. My parents were young and had no idea that I had this condition and were scared to death when I was born. They call me their miracle baby till this day. I had another hernia repair surgery at about 2 years old. Other than that I haven't had any issues with my operation. God bless you and your family and I applaud you for making this site.
Hi Lisa, My son joshua was born May 30, 2007. He was 4lbs 4 oz and 17inches long. We found out about his defect when we were 12 weeks along. It was a long pregnacy. Joshua is my second child he has an older sister named Kristin who at birth was 8lbs 5oz and 21 1/2 in. She was a healthy baby. Joshua stayed a total of 6 weeks in the NICU had 2 surgeries and 2 blood tranfusions. We have had minor problems since then. He developed musclar totricolis ( tight neck muscles) from being in the same postion in the NICU. So he went through a year of physical therapy. He also had speech therapy for a few months. He also had to wear a helmet for about 3 or 4 months to reshape his skull due to plageolcephly. Joshua was behind in his developments for a little over the first year. Now he is almost your typical 2 year old boy. He is short for his age and hard to understand most days. We still struggle with certain foods and drinks that he can't have....most give him almost instant liquid BM. We have to go for an upper GI and small bowel follow through to check for any bowel problems. I hope everyone out there whose family has been touched with this birth defect gets through the rough times and can sit back and enjoy life.
God bless all
Kasey & Dave Butler
First off thank you for making this website, it is a great place for people we are expecting a gastro baby or have already had one. On December 23, 2003, we found out that we where going to have a baby, we where shocked as we had only been married 3 months. However, we where very excited. In March of 2004, we had the triple screen test and it came back positive for spina bifida, so we where sent to a specialist 50 miles from where we lived. Our appointment was on St. Patrick's Day 2004, we where told that the spine was fine but the baby was going to be born with gastroschisis. Of course being the emotional person that I am and being hormonal I cried and blamed myself. After the shock wore off we did our research and decide there was not a thing we could do about this and did all we could to get ready for our little miracle to be born. However the specialist 50 miles away didn't deliver babies with our little ones condition, so we where referred to a doctor another 50 miles away from home. Each month we continued to see our local doctor just in case, then the doctor 50 miles away, the doctor to deliver over a 100 miles away and the specialist that was to do the closure surgery. The doctors had order me to quit working at 34 weeks so on the Friday of that week was my last day and that Saturday I was to move to my parents house that was 30 miles from the hospital I was to deliver at, however, that night was I was home along getting ready to "move" the next day, the baby had other ideas. After phoning her father and him returning home, I had my first contraction at 9:45 p.m., we arrived at our local hospital, which we weren't to deliver at 10:35 p.m. and was a 5-6cm in the ER was moved to a delivery room at 10:45 was a 7-8cm and at 10:54 p.m. after only 1 hour and 9 minutes from first contraction till she was born Carryna was born at 4 pounds 11 ounces and 16 inches long, she was 6 weeks early. Since she was to be born at another hospital she was taken by helicopter#2(after the first one broke down) to the University Hospital over 100 miles away. Since I had just had her they wouldn't let me go, so my husband and brother went to meet her at the new hospital and sign her in for surgery. Her first surgery was at 5 hours old and they did the silo, and at 5 days old all there intestines where back in and they did the closure surgery at 7 days old. She continued to grow and have the normal NICU ups and down and spent a total of 60 days in the NICU before we got to bring her home 1 day after our first wedding anniversary. I couldn't have asked for a better present. She has had to have eye glass at 5 months old and eye surgery at 1 year old for her eye muscles being to tight. She also had to have heart cath surgery to close her PDA at 18 months old. But since these surgeries she hasn't slowed down one bit. She is currently 4 1/2 going to be 5 in July, goes to Pre-K School 3 days a week. She is a naughty little redhead, and we wouldn't change it for the world.
I know a question we always had was, "What will it be like to have a second child?" I would like to say that this past July, 1 day after Carryna's 4th birthday we welcome a little born Greysen into this world and he is prefect.
Thanks for letting me share my story and Thanks for listening. Please anyone contact me with questions or if you just want to talk. I know I would have loved to have someone to talk too. And I would love to talk to anyone we has a gastro baby and compare stories.
Carleen, Mom to Gastro Miracle Carryna 7/23/04 and Greysen 7/24/08
Email me anytime,
My little girl Alyson [aka Aly] was born in April 2005 with gastroschisis. We were forewarned of her condition by the blood tests & were "prepared" I guess. She was 1 of 3 baby girls there at the time with gastroschisis. My Aly did the best of all 3! She had 75% of her intestines put back in within 2 hours of birth, stayed in the NICU only 11 days. She had acid reflux as an infant and that has been the only thing we have been told was connected to the gastroschisis.
In Nov. 2005, Aly had hernia repair surgery. She was supposed to bleed for about a day with a pressure bandage. However, she instead bled for an entire WEEK! The doctor who performed the "repair" surgery seemed baffled. She had Aly tested for anything she could come up with, even bleeding disorders. Aly was found to have no significant findings, she was borderline von Wilebrands syndrome, but not officially diagnosed. Also, we were told with her hernia repair her belly button would look even better, but it looked worse. She looked as though she had been gutted.
She has had life long troubles with constipation and pain. About a year ago, she saw a ped. gastroenterologist and after many tests wanted to do a colonoscopy to possibly diagnose "Celiac" disease. He said Aly carried the gene. My gut instincts tell me otherwise. I can't help it. Now, I have decided to do the colonoscopy just to see of he can see SOMETHING that might be our culprit. In the lat 6 weeks or so, there have been 2 instances of Aly crying that her tummy hurts, getting pale and then vomitting. After she vomits, she literally bounces right back and is fine.
When I got pregnant with her, I was almost 19. I was uninformed and just trusted what my doctors said. I feel I made some mistakes and if I were pregnant with her now, things would have been so different. I realise the gastroschisis was not my fault, I just think her after care could have been more accurate. I just know that SOMETHING is going on with her. My husband says I worry too much & I hope he is right, but I can't help but feel it... If anyone has any information on the long term effects PLEASE share them with me. You could help prepare me or ease my stress some. ANY info is appreciated and will be replied to. Thanks and God bless =)
*Please out gastroschisis or something in the subject line as to not be mistaken for spam. THANKS!!
What an amazing web site you have created for all of the new moms and dads who are hearing this scary news about their new baby. My story goes back almost 30 years to Sept 1979. Imagine how things have changed since then. My husband and I had no idea as we went to deliver our first child that he would be born with gastroschisis. There were not routine ultrasounds done back then so it was something neither us or our doctor were prepared for. Let's just say it was one of the scariest and happiest days of my life. Our son had to be taken by ambulance an hour and half away to the closet children's hospital with a surgeon qualified to do the surgery. Five weeks later he was home and 30 years later we still adore him. He is strong, healthy, handsome and he and his new wife are looking forward to beginning a family of their own. As one of your previous posters mentioned, his scar is also quite large compared to the tidy little scars seen after most surgeries today but that has been the only sign that he had any problems at birth. This is in no way intended to minimize the fear that parents have, but for those in the midst of fear and unanswered questions, it may be hard to believe, but this will be a distant memory in the blink of an eye. Our son is truly beautiful in every way...inside and out 30 years later!
Thank you for giving parents a place to come for information and hope during this scary time in their lives.
Thanks so much for your site it really helped me through the toughest time of my life. My little girl was born with gastroschisis august 8, 2008 (4lb 6oz). We discovered the disorder at 17 weeks and i probably cried for about two weeks. I never even knew babies could be sick, its just not something people talk about. I honestly was in denial my whole pregnancy, i would completely forget there was anything wrong, i felt like i was having a normal pregnancy. It was so hard to hear that word normal, i wanted so badly to just have a normal pregnancy and normal baby... a normal life. Now i wouldn't have had it any other way. As painful as it is the sit my your babies bed side everyday, hour after hour, waiting crying and hoping for the best, it changes you. It makes us all stronger it makes us love harder and truly truly appreciate every healthy happy moment we get with or miracle babies.
We were not the typical gastroschisis case. Well it started normal, they placed a silo around the intestines, let gravity bring it all back inside and did her first surgery 7 days after she was born. It was a tigh fit but all was going well. I even got to hold her when she was 2 weeks old. The first month was the hardest she was so sedated to keep her comfortable and painless but she was so small and pale...lifeless. She didn't feel like mine.
After 2-3 weeks they started lowering her meds and letting her wake up then finally the first poop came and we thought all was well. they started talking about feeding her which i knew was one step closer to going home. They tried to wean her from the osilator and ventilator and thats when they notice something was wrong. Hours before her first surgery her picc line had infilltrated and the fluid filled the pleural spaces around her right lung. Basically the fluid was in between her ribcadge and lung putting lots of pressure on her lung. They removed the fluid with a small needle and ultrasound machine and she could breath again. It was one of the scariest moment sof my life, i had only left her side for 10 minutes, i was just in the next room completely oblivious that my baby girl was fighting for her life.
I lost trust in the doctors after that, why didn't they notice sooner? why wasn't i there for her? Its the strangest feeling when your going through it all.. guilt, shame, fear, alone,depressed, envy...Guilty that all you can do is stand by and hold their tiny hand...Ashamed that you could not produce a healthy baby...Fear that any moment their tiny heart and body will just give out... So alone as you once again go home empty handed...depressed for thousands of reasons...and mostly envious. So envviuos of every other parent thats baby eats breats and poops all on its own, envious every time you pass the nursery and see new parents staring at their healthy babies that are going home, envious that you missed out on all your babies first's, envious that you missed out on that precious moment when you and your baby are wheeled out from the hospital and all eyes are on you. Then you have one moment were you actually felt happy and you make your self feeel guilty for feeling happy when your babies so sick. Its just awful. Looking back i don't know how we survived. I think it was my boyfriend, he stayed so strong and positive... i think if i would have ever seen him break down i really would have lost it.
About a week after the noticed her lung problem (hemi elevated diaphragm) they also found she had a blockage in her intesines. My whole world crashed, i think i was a zombie for the next month. All the doctors could say was "we have to wait and see" all i could do was cry. I wish now that i would have been stronger for her. During the month of september she had 2 surgeries, 1st was to fix her belly. It really wasn't so bad it was just a little c-section looking scar and within 2 days or so she was back to her normal slef. 2 weeks later they did the surgery to help her breathe (laproscopic diaphragm plication) This surgery was another one of the hardest parts of my life. Taking her down to surgery this time was painful, at this point she was very awake and aware. They informed me at the last minute that this surgery may not even fix the problem but i really didn't have any option, it was this or leaver her on the vent for 6-9 months!!!! She had the surgery and the doctor told me it was the "best case senario" we were so happy it went well. We went up to visit her and sine my boyfriend was sick i went in alone. It was the most tramatizing image i've ever seen. She had chest tube and iv's picc line all the monitor...shes was so small and naked..she looked so helpless. I thought shed never get better.
It was a miracle within a week she was breathing on her own!!! from then on she really just took off They started feeding her through an ng tube over time all the picc lines and iv's came out and with time she was eating all on her own!!! It was a long process that started slow but towards the end she really became more and more baby like. Healthy happy smilling, i was so happy to finally see progress.
They sent her home the day brfore thanksgiving, all in all we were there for 16 weeks, 3 surgeries, 1 picc infilltration, 1 blockage, 1 urinary track infection, 1 staph infection, and 13 blood trasfutions. She came how weighing 8lb 10 oz with no tubes no monitors nothing but a few meds.
Today she is 7 months nearly 11 lbs completly healthy no meds! we see a home nurse every other week a pyhysical therapist every week and a pediatrition once a month. She is rolling over starting to sit up eating cereal laughing smilling eating and pooping just like a normal baby.
I couldn't be more greatful to be where im at today
My precious grandson, Brandon, was born fall of 2000. Brandon was born 6-weeks early
weighing 3lb. 7 oz. He had three operations and finally left Children's hospital three months after his birth. He had several set-backs his first several years: it was said that Brandon would be smaller than his siblings and he was hospitalized about every six months for pneumonia.
He is the joy of our lives and remained very healthy from four years old until six years old. June of 2008, Brandon complained of Belly Pain. Subsequently he had 100 inches of his intestines removed, you can survive with 30 inches. There we many issues with his recovery. Bathrooms issues remained complex until December of 2008 when Brandon again had Belly Pain. This time there was a blockage that took only one inch to repair. Eight year old Brandon was very depressed through that recovery. March 2008 finds us at Children's with an obstruction that passed through. We now know that if Brandon does not have a bowel movement in 24 hours, get him to a hospital for an x-ray. The doctor's can give us little to no information on what to look for or expect. I can't find any information on Gastroschisis children, not infants. If anyone can help us, please e-mail me at firstname.lastname@example.org.
hi lisa, my name is zac james, i was born with gastroschisis in 1992, i dont think that parents should be extremely worried now because i was delivered with this desease, then they repaired me. the only thing thats different between me and anyone else is that my belly button looks like the skin was sewn together, only my belly button, everything else is completely normal.
with the technological advancements they have now compared to 1992, i think that it would be a lot more safe these days.
I'm 19 weeks & 2 days pregnant as of today.
I found out 2 days ago about my unborn son having Gastroschisis.
I got a call from my doctor 5 days after I went in for my monthly prenatal check-up and got blood drawn for the (optional) abnormalities testing, which I obviously decided to do, thinking nothing of it... However, my doctor notified me on the phone that I had something come back elevated on my test and needed to get a Level 2 Ultrasound to look at the baby better. So she told me she was making me an appointment THAT SAME DAY in the only place in Maine where they do Level 2 U/S, which is Portland Maine, 2 hours south of my location. She gave me almost no notice, and I had to leave immediately early in the morning soon after she called, so I started getting nervous at that point.
So I arrive at my appointment, and while doing a half-hour long ultrasound, they explained to me that my baby had a minor birth defect called Gastroschisis, and the ultrasound tech and counselors explained to me all the details. I cried so hard, and for so long. I cried the entire 2-3 hours I was there, and again when I got home. I cried yesterday, and I cried again today too. But it's slowing down a lot. I think it's more of a matter of me needing to accept the situation and be thankful that Gastroschisis can be fixed immediately after birth and isnt something long-term or mentally damaging. I need to look at the positives, and I'm trying my best...
It's not easy for anyone to hear this news, and I'm still trying to cope with it. I was very happy to see someone had taken the time to make a site about this, and share their story with the world and provide all the information that mother's bearing gastro-babies need to be aware of. It was very interesting, yet emotional at the same time, reading Ty's story, and I'm happy to hear he's doing good now. He's a strong boy, and I'm sure you're so proud of him. Please keep us updated with pictures and a blog on the site about how he's doing.
Samantha, 19 years old, located in Maine.
Mother of 2 year old son, and currently in 2nd trimester with Gastro-baby (boy)
Just yesterday, I found out my baby had Gastroschisis. I am 12 weeks pregnant and was heartbroken when they gave me the news. At first, I just had a regular ultrasound to see how far along I was, and that's when they mentioned there's a doctor coming in from the neighbor island tomorrow that I would like to see. As casual as that. I didn't think of it as a bad thing, only excited because I got to see my baby for the first time.
That's when I found out about the Gastroschisis birth defect. It came to me like a bomb shell, and seeing the look on my boyfriend's face only made me sadder. I want to let you know, reading your success story about your baby boy Tyler helped healed my heart and gave me hope. And I thank your for writing and creating this webside for all of us who's going through with this.
Now, I can enjoy the rest of my first pregnancy with my loved ones and look on the bright side. Again, thank you for puting a smile on my face and a hope in my heart.
God Bless you and your family and keep you all safe.
Much Love and Aloha, Judith
My daughter just found out her unborn son has Gastroschisis on 02/26/09. She is 19 years old and 18 weeks pregnant. When she went to the doctor to get the results with her boyfriend, they came home with nothing but the name on a piece of paper and a general idea of this rare defect. Her ob gyn, who has been in practice for over 20 years, had never seen it and didn't know what to tell them. He is sending her to a major hospital in our state almost 90 miles away from out home on 3/5/09 to see a specialist. I immediately got online and googled it and your web site is one of the the first thing I showed her. I sat up late that night and all day the next day researching everything about it. We read everything on your page and it actually calmed us a little bit. Thank you for having this and all the stories and pictures. We replaced fear with hope by reading this site. I feel like we are not alone with this and that means alot to me. Thank you. Little Daniel Lee is due August 6th. We will keep everyone updated and my prayers go out to all the families who read this and share what we are going through.
Jen, Kristen and Michael in VA
First of all, I want to thank you for creating this site. I have tried to research this topic many times throughout my life, and have never found such an in-depth and accurate description of gastroschisis. I was born with this condition and I am 23 years old and healthy as ever. I do have a scar approximately 5-6 inches long down the center of my stomach with no belly button, obviously they weren't so advanced in 1985, but I have never had any complications related to my condition in all my 23 years of life. I hope this gives you and other parents hope for the future of their children's lives, as well as individuals born with this. Again, thanks for your site, and good luck with everything, your baby is beautiful!
Hello, I was searching for information on people who have gastroschisis and I found you! My baby is twelve and a half years old and is doing just great! I did not know she had this condition until she was born--was that a surprise! She is healthy and happy--the only thing is she doesn't have a belly button. When I had Kaisee she was immediatly airlifted to the nearest hospital that could handle the operation. It lasted eight hours and she came home with me TWO weeks later--what a fighter! I am so happy to see there are others out there who are grown up living long happy lives-thanks for your website!
Laisee and Kaisee
You are truly a blessing. You have helped so many people deal with the issues, personally, mentally and emotionally through your website about Gastroschisis. I have read every ones stories hoping to find a case similar to mine but, I had no luck. I am not surprised because the specialist that I see also have not found any other patients in my case. I went in for a routine ultrasound at 16 weeks to find out I was having a little girl! I was so excited, the excitement turned to fear when they told me she had Gastroschisis. I had no idea what it was and because they were not a High-Risk Hospital they sent me to see a specialist at a different hospital to confirm their diagnosis. In confirming the diagnosis of Gastroschisis they say it is not common to have multiple abnormalities but, they need to check. In my daughters case she also has Hypo Plastic Left Heart Syndrome A.K.A "Half-Heart Syndrome." We have a battle ahead of us. I pray to God every day for his help and blessings. I am now 25 weeks pregnant and went for a routine ultrasound for Growth and Development I am sure you had to do the same. We found out yesterday that her intestines are starting to dilate. As you know that is not good. With a Congenital Heart Defect and Gastroschisis they said her survival rate if I make it to full term is about 25%. Now that her intestine is starting to dilate they are talking about a early c-section around 32 weeks. May God Bless you and yours. Thank you for your web-site it was so helpful!
Samantha and Baby Alivia
I wrote to you back in the summer about your website. Ty is the baby I used as an example for anyone asking me about gastroschisis. Its mostly how I got the Grandparents to stop freaking out! I am happy to say that our baby was born November 24, six weeks early, and is doing GREAT!
We were very lucky, all his intestines were out, however, the surgeon was able to get them all back in in one surgery(only took 45 minutes and he still has a belly button). Luke was in the hospital for a total of 17 days. It was the quickest recovery the nurses had ever seen.
Thank you again for sharing Ty's story with us. It really gave us a perspective on what to expect and how to deal with the overload. Luke is now two months old and weighs 10 pounds. He started in the 5th percentile and now he's in the 10th... moving up!
Oh and HAPPY BIRTHDAY TY!
Thank you for your website! I am a proud Grammy of 2 grandchildren ( 3yrs & 1yr) and of a very special little girl still in Mommy's womb... little Shyla. Shyla has gastroschisis and I found your site while researching about the condition for her Mom & Dad, and for myself as well. We have so many concerns and questions... well you know all about that! Your site has helped so much; it is informative, and it gives me hope. I enjoyed the pics too (he's adorable!). Thank you for sharing your story with us!
I love your website lisa. I had 15 surgeries before I was able to go home. My parents did not know I would be born with gastroschisis since they did not have ultrasounds in 76. I had many complications and stayed in the hospital for a year before I could go home. It is remarkable the to hear all these stories and the sucess rate of the children. When I was born they had no idea what to do. I was covered in a garabage bag to my neck and sent to childrens hospital of New Orleans. Yes my parents should have sued the hospital. I had a wounderful doctor by the name of Rowena Spencer that never gave up and saved my life. I have three beautiful haealty children of my own now.
My daughter was born with gastroschisis on Sept 24, 2008. She had surgery hours after her birth and they were able to place all of her intestines inside her abdomen. She spent 6 weeks in the NICU and is now home with us. She is my little fighter girl. I created a video of her first two months. I hope that it touches you and brings hope to other parents who are expecting a baby with gastroschisis. Feel free to post my email so that mothers and fathers can contact me with any questions.
Analise Marie's Video
Hi I am 18 years old now and was born with Gastroschisis 6 weeks early. My parents were told that I would not survive. The doctors told them to go ahead and plan my funeral. There happened to be a specialist in town for a convention and they got all of it back in one surgery. I was in the hospital for a month and then I got to go home. The doctors gave my parents the option of doing a surgery when I was three to make my belly button look normal. My parents decided that I had been through enough and that it was better to just leave it as is was. I am a Senior in High School, an honor student, and am going to college in the fall. I hope my story will give parents out there hope in that anything is possible.
thank you so much for your website. It gave me hope when i felt like there was none.
We found the gastroschisis when i was only 12 weeks pregnant. i spent the next few months crying, wondering if my baby would live. i had a csection at 38 weeks because they found in a ultrasound they she had not grown in 3 weeks and my fluid level was very low. They were able to put all of here bowel back in that night and within two weeks she was eating well. She got a staph infection from here central line so that added another two weeks to her stay. She was in the hospital a total of 30 days. Born 10-21-08 and home on 11-20-08. She was very lucky and is doing great. Thank you to everyone for your stories and i hope alexis's gives other parents hope.
I just wanted to write and thank you for your wonderful website. It really helped my family and I as we prepared for the birth of our own gastroschisis baby. The pictures and everything were great, your site was the first one I saw that actually had pictures of the baby not all covered with gauze, and that really helped to prepare us for seeing our own baby that way.
I have a blog that shares our story, it is www.faiths-place-08.blogspot.com
I think it is great for you to have other families share their stories, I know that reading others' stories helped us more than anything.
Today I just went on your website because I was researching about my symptom for, ironically, my college applications. My name's Brenda, and I was born June of 1991, in Salt Lake City Utah. Growing up I didn't realize I was any different from anyone else, and naturally I don't think I am to this day. It really is no big deal. My parent's treated me like they would have treated a "regular" child. I regret saying that word considering all that is different than me is that I simply have no belly button. Haha. Well, I can give one suggestion to all those parent's and future parents out there in regards to their children having gastroschsis, please do not take it as the child needs special treatment. They will not grow up mentally disabled, and if you treat them any differently then had you a 'regular' child, it won't be for their good in the future. My mom, while I was growing up, always told me I was a lucky one, somebody touched by God, special. I grew up thinking that, and actually I do not know why, but when I was little I was proud of showing off my non belly button stomache. People would go "whoa" and I'd beam with giddy. haha, that was fun. After that I became a little more aware, but because my parent's never treated my non belly button-ness as something serious, (playing it low/cool), I grew up not having any emotional, and or psychological problems. Now, I'm a senior in high school, about to graduate, and stressing a lot over College Applications! How normal can one get!
To everyone out there with the symptom, persay, stand strong and don't sweat. It's nothing to worry over, because nothing like gastroschisis, the measly small bugger of a thing, can stop you persuing your dreams. Heck, it can also be something you can write in your applications, which I plan to do. Why not? I'm not ashamed of having survived, doctor's saving my life. Why be ashamed? Why feel any different than someone else? Everybody's unique, and everyone can shine. Don't let anyone tell you you can't.
ps. The only dissapointing thing for girls is we can't wear bikinis. Dang, and I'm 18 almost, haha. Actually, go ahead, what's to stop you from wearing a two piece! I'll do it one day. Whose afraid? I'm not, because in the end, gastroschisis is but a speck of dust.
Thank you so much for posting your page. I wish there was something like it when I was pregnant 6 years ago. I could find very little info. at that time. Your page will be a great help to parents pregnant with a baby who has gastroschisis or to parents with a child already in this world that had this condition.
My son Josh was born 5 years years ago. When I was 18 wks pregnant we found out he had gastroschisis. He was born a month early. But his case became rare. When he emerged, there was no sign of gastroschisis. His belly was whole. But upon further examination, and surgery at 2 days old. It was found that the intestine outside the belly had gotten twisted, died, and fell off. He is missing 2/3 of his small intestineand part of his large. He spent 3 months in the NICU and came home on a feeding tube and broviak nutrition. It all sounds bad and it was...
BUT. He is now 5 years old and just started Kindergarten. He's healthy, just a little short for his age. He has no feeding tube, or IV anymore. No special eating requirements, except no juice. Just milk and water. Just alot of bathroom breaks. He's a happy smart boy, with just a few scars from his surgeries, but he shows them off like badges of honor.
So even the worse case senario can easily come out fine with time.
I was pregrant with my 5th child and was 4 mths along when I went in for a regular ultrasound to find out what it was going to be.. The tech told me that she was a girl but she thought that she needed the head tech to come in and look at something on the screen..
She told me that they couldnt get a good picture of belly button and that they really needed it, so they would be calling me back in for another check.. I have have 4 previous childern and never had I had to go back and have something go wrong but I knew when I left that day that something just wasnt right... I got the phone call about 3 days later with the nurse telling me that there was something wrong with my baby. And that they was sending me to UAB to the high risk doctors.. I had never heard of what gastroschisis was, all I knew is that it was where the intestins was on the out side of the body.. So like anyone I got on the net and started looking up everything I could find about it, and let me tell you, you will drive your self crazy looking at all of that stuff that you can find. But long story short I went to the high risk doctors and they told me that they wanted me to at least get to 38 weeks so that her lungs would be developed so I went back for several sonars and check-ups. Then when I was 33 weeks I went in for a regular ultrasound and the doctor told me that he was going to do a amio to see if her lungs was developed because she needed to be delivered.. I got the call at 5 am the next morning to be there at 9 to induce me.. They induced me and I went for a whole day and the next morning they came in and told me that they was going to do a C-Section. It was a very scary feeling because I have never had a c-section before.They called her transport from childerns to let them know that she was here and to get ready for her. She was born at 7:47AM and was traspotrted to Childerns Hospital they let me see her for about 3mins before they left with her.. I didnt get to see her till 4 days later.. I thought I was going 2 go insane but I knew that she was in good hans and THANK- GOD for the nurses and doctors at Childerns they was wonderful.. She had her 1st surgery when she was 6 days old.I was told when I got there that you would start to take steps out the door... 1st step NICU 2nd step 3rd floor NICU 3rd step Cube Last step Room in with your baby... It took her about 2mths to get to the last step and we got to come home..But it was a long struggle.. The feedings are the worst.. When she started to I startedto take extra clothes with me because she would suck 5-10 cc and throw it up everywhere.. She would get up to about 30cc and get sick and they would stop her feedings for a day or 2..It is a Start and stop process...
She got released and came home for a week.. She was losing weight so we ended up going back and staying for about a mth.. They thought they was going to send her home on what they call TPN they had to put in a Central line that she could come home with the TPN with but she got the Staph infection so they had to take it out.. The doctors told me that they was going to give her over the weekend to see if she could hold her weight and if she could then they would let her come home. I prayed and prayed and put it in Gods hands and guess what she did she held her weight and has not let up since.. She got to come home...
She now weighs 19 pds and is 7 mths old she is a little behind on learning things but thats ok we will get to all of that... She has to have one more surgery on a hernia that she got that I was told that most Gastroschisis babies get.. But they say she will only be in there 4-5 days..
All babies with this are blessings and they go through so much but when I look at her I know that she is going to be fine.. They are fighters.. Just dont rush the feedings and be paticine with them.. I got frustrated alot with the doctors because I was like she can eat more than yall are feeding her but when they finally gave in and let me feed her more all it did was set us back.. So you might not think that they know what they are doing but belive me when I say take it slow with the feedings you will get there....
I will keep all of your babies in my Prayers
I have linked some pictures of her then and now to here check them out and I hope it puts a ease to some of your worries. And answers some of your questions
I am so grateful for your website. It is so informative and encouraging. I want to share my experience with you and other mothers around the world. When Trinity was delivered at 37weeks, her condition was a big surprise to me and my husband. We are from the Bahamas and the doctors did not see that she had gastroschisis. My little angel had surgery within several hours after her birth. After surgery, she had bowel movements and we were just working on her tolerating the feeds. At 6 weeks ,she experience complications and we had to air ambulance her to Jackson Memorial Hospital- NICU . I am now in Miami, she will be 2 months on Friday and I am still going through this journey of our lives. I am 34,mother of 2 girls, T'Chea and Tyla and it is the hardest thing to leave my girls in the Bahamas. I know this process will sometimes take some time but I am happy to know that you and other mothers can help me through this journey. I will keep you posted.
Chivonne M. Smith
Going through by Faith
OMG! I LOVE YOU! LOL! I am Kara! I am 18 years old, and I am also 18 wks pregnant! I just found out yesterday actually that my baby boy had Gastrocheisis! I was so shocked, and nervous! I was looking through the forums on this page when I seen your comment on there that you could help then I went to your "I-am-pregnant page and I noticed that you had a Gastrocheisis page.....I found it and I LOVED IT!!!!!!!!!! I read it word for word! If i needed to talk to anybody your was the one! You put me at a ease of mind! Thank you so much! Your page has calmed me greatly! I am now happy, and able to enjoy my pregnancy! I am so excited for my baby boy to get here! He is due on Feb 19th! I am sure they will make me have him early! I live in Maysiville Ky, but I am delivering at UK in Lexington! I was so nervous because the thought of intestins showing was gross! When I seen your "BEAUTIFUL" baby's pics....It was all ok! It wasn't all that bad after all! Now I know what to expect thanks to you! I appreciate your time and effort in creating your page! It saved my life literaly! Thanks again!
I was a single mother of a 4 year old son when I met back up with my first love. I was 19. He was 24 and ready to settle down with our family. We found out a few short months later that I was pregnant. When only 13 weeks along we were told "something was irregular on my blood tests." Scared and worried we were told to come in immediately for an ultrasound. We spent the entire night crying and holding one another. The next day we were asked to come back to the doctor's office. We were told then our child had what was called gastroschisis. We were dumbfounded. We were young and thought we must have done something wrong to have caused this. We also were informed of the facts concerning this congenital disorder. Nothing could have been done to prevent it and there was nothing we had done to cause it.
My son Justin David had his surgery at 4 days old. He then battled for weeks to learn to feed. He was released from the hospital at 2 months old and went right back the next day. He endured so many horrific things at such a young and innocent time.
Justin David is now turning 7 and still has the occasional "accident." But if you didn't know of his birth defect firsthand, you wouldn't guess it in a mllion years! He is a miracle and I am thankful everyday for the chance to be his mommy!
Thank you for this website and I hope many parents see and learn from it!
Attached is picture of my beautiful miracle!!!
I happened on your website today while researching some information on gastroschisis. I have never be challenged with the disorder personally but I wanted just to say that your blog made me smile and made me cry. Ty is a very lucky boy and I wish your family the very very best.
Thank you for warming my heart.
I am 22 years old and just gave birth to my first child. Her name is Keani and she is absolutely beautiful!!! She was diagnosed with gastroschisis when I was 3 months pregnant. The whole entire pregnancy was difficult because we were labeled a high-risk pregnancy due to the chance of making the bowel inflamed. No matter how much you read up on it, see pictures, or even talk to someone who had a gastroschisis baby, you can't prepare yourself enough for what is coming. Everyday I worried about her and if she was doing well in my tummy, and laying on my side all day not doing anything made my worrying that much worse. We had weekly appointments with our OBGYN and perinatologists to make sure her bowel didn't get inflamed. (I must strongly recommend keeping every appointment, especially with your perinatologist.)
I was scheduled for a c-section when I was 38 weeks, however at 35 weeks I went in for a regular check-up with our perinatologist and she said I would have to have an emergency c-section within the next week because my baby's stomach was slipping in and out and her bowel was becoming dilated. We scheduled the c-section for that Friday. I was going in for NSTs and biophysical profiles all that week. She passed with flying colors. The day before the c-section, I did not feel her kick at all and her movements were short and weak. I told my husband and we were debating whether to go to the hospital or wait for our c-section which was scheduled the next day. I ended up telling him I KNEW something was wrong and I couldn't wait another day. We went to labor and delivery that night and took an non-stress test. Her heartrate was unusually high and the nurse called my doctor. He told the nurse to prepare me for a c-section because my baby was in distress. I ended up having my c-section that evening, less than a half an hour after we were admitted. I was so scared for my baby but the second they got her out and she began to cry my heart burst and I couldn't stop crying. She was born at 4lbs. 14oz. on June 19th.
Once she was born, the nurses put her, neck down, into a sterile bag, wrapped her up in a blanket and brought her over to us. I got to kiss her on the forehead then she was rushed to the NICU. Awaiting her arrival was her pediatric surgeon, the hospital's neonatologist, respiratory, and a handful of nurses. Her surgeon was able to put 90% of her bowel and her pancreas back inside her stomach. The remaining 10% was wrapped in gauze and put in a bag, where it stayed until the following day when the surgeon was able to put it back inside her and even make a belly button for her!
It was so hard for us to leave her the day we were discharged from the hospital. I remember telling my husband that we should just get hit by a car so that we can be re-admitted and be close to the baby. It broke my heart to know that she was going through so much and I couldn't be there for her, but once I started to get to know her nurses my mind became more and more at ease. I have to say that NICU nurses and doctors are AMAZING people! It takes a very special person to do what they do.
Keani was not given food until she was almost one month old because her stomach would not be able to digest it. Everyday we prayed for her to poop so that we could start feeding her. The doctor ended up ordering her to be fed progestamil (a pre-digested formula which is easier for her to digest than breast milk and that smells like bad dog food.) The very next day she POOPED!!! Other than her birth and above our marriage, that was the best day of my life! My husband called from work for his usual baby update and I thought it would be better to tell him in person so I lied and told him "still no poop," which is sad because everyday, the first thing he'd ask was "did she poop yet?". I was so excited I took the poop diaper home and opened it and put it on his dinner plate. Well...I thought it was funny. Anyway, after that day we had our ups and downs. Keani would throw up after her feedings because she couldn't hold down the amount she was supposed to take for a baby her weight.
After being in the NICU for a month and 10 days, Keani was finally discharged! We brought her home and actually started feeling like parents. I told my husband we should do shifts where I would stay up and watch her half the night and he'd do the other half. After the very first feeding at home, Keani threw up a significant amount. After speaking with my husband, we decided to let her rest and see how she did the next feeding. At about 4:00am, she threw up 5 times in a row and had blood in her stool. My husband rushed her to the hospital where she was re-admitted into the NICU.
It is a little over a week later and she is doing very well. We antisipate she will be coming home again real soon.
I just want all parents of babies who have gastroschisis to know that they are no alone and to have faith in your baby. He/she is stronger than you may think.
I hope I could help those of you going through a similar situation.
Photos of Keani are at www.photobucket.com/keani.
I will be posting her pre-surgery pictures soon.
I just wanted to thank you for setting up your website with Tylers story. Our baby was just diagnosed on Tuesday at the 18 week ultrasound. We are set up to go to a specialist and for additional testing tomorrow. We both told our parents last night by showing them pictures of your son at home first, then of before and after the surgery. Thank you so much for calming some of my fears.
Hi! I'm writing to you for a few reasons~ I don't really have much to share yet at this point. I came across your website as a forward to a friend and shortly after was forwarded it by others as well- I found out 2 weeks ago that my baby has gastroschisis. I'll be honest- I have finally been able to sit down and really comprehend what I've learned about this. After reading all of your website, I had to send out my thanks and appreciation for your website~ thank you for sharing your experience for those of us who have the same emotions, and I'm sure many more emotions to come in the future.
I found out during a high risk ultra sound check for downs syndrome. To walk in there expecting to walk out with only great news and to be reassured that I have a very healthy baby.. I must say- it completely rocked my world. I'll never forget the way the nurse so briefly and casually mentioned it "Oh, this concerns me.. this looks like gastroschis, which means organs are growing outside of the body... I will have the doctor look at this more... Oh look! Here's his foot.. his arm..." Now.. my only instant thought was "What the F**K did you just say!??! And can you go back to the organs outside of the body??" I was lost- I couldn't believe how carelessly it was brought to my attention and than quickly moved on to other body parts. GO back! What?!?! I didn't know what to say or do. I had tears streaming down my face- puddling into my ears- she must be wrong were the only thoughts that were keeping me from hysterics. The doctor soon came in and confirmed it, tried giving me information and decided it was best to set me up with a genetic counselor in a few days. He tried to explain more- I completely shut down, I went numb, I couldn't breath. "Do you have any questions at this time?" Are you kidding me?? I couldn't breath- Can I have a tissue? where is your bathroom? I need to close the door and completely break down- I excused myself to the bathroom insisting I had a full bladder for so long- I can't even remember if I really even peed? I know I completely lost it- I couldn't talk- I couldn't explain it to Brian- I'm a very independent person- non emotional and wasn't taking this whole moodiness sensitive thing well in the first place, did he really just say my baby had organs growing outside of his body?? I called Brian, I was hysterical- I couldn't talk- he assured me no matter what it was he loved me, everything was going to be ok, we will get through this- I cried harder- my thoughts of what did I do wrong? was it that I drank before? What did I do wrong? It would be so easy to blame myself than- He loves me.. why? My world felt like it was falling apart and Brian is completely my rock in the sense of always thinking positive. He was at work- I made no sense of what the doctor said was wrong- God knows what I sounded like trying to translate all of that- He hung up with me and called the doctor- I spoke to him within ten minutes and he had thousands of websites, videos, pictures up and engrossed himself into learning everything about this. I couldn't at first- I briefly looked when I got home, I couldn't deal with it- I was completely shutting down.. falling apart faster than I ever have before. To me I couldn't understand how this poor baby could live? How selfish was I to think I should be able to just bring the baby home and expect to have a healthy happy baby. I guess I just didn't expect this, anticipate this, prepare myself for this.. I mean.. up until 2 weeks ago- I had never even heard of this! We met with a genetic counselor leaving thinking we knew more than he did, we just wanted him to confirm the things we have read or heard that contradict each other- we wanted confirmation on things we knew. He was quite impressed on how much we had researched everything and how much Brian knew and there was no website that was recommended that we hadn't already checked out- except yours. I believe it should be mandatory they recommend your site prior to even telling you its a possibility your child may have this. It has helped me a lot reading this. I have forwarded it to family as well. Its hard to explain, and its still hard for me to talk about- your website it the best thing to educate and really gets down to feelings as well. It comes from a real person, who really went through this. It made me feel... I'm not the only.
We live minutes away from Chicago and will be checking out a few hospitals to decide where to deliver and if the baby will need to be transfered to Children's Memorial in Chicago which is highly recommended. I hope to have a wonderful success story one day like yours and will keep you and your family in my thoughts and prayers~
Much Love- Eran
Thanks for sending those pics, what a difference!! I attached some of kendra from day 1 to where she was 11months!! My sister gave birth Naturally as they didn't know about the gastroschisis, she weighed 2kg and spent about 2 weeks in hospital after har surgery! Was really interesting to see a real baby cause all the websites that we went onto all have those cartoon diagrams and you can't really see what it looks like on them!!
I just wanted to thank you for your informative and positive website on gastroschisis. We just found out today that our first grandchild (he's a boy!) has been diagnosed with the condition. He is the baby of teen parents who already have a lot "going against them" and finding this out today was devastating to us all. The first thing I did was search for gastroschisis online and your website was the first one google pulled up. You were very thorough yet uncomplicated in your explanations and so candid in sharing your story and experiences, thank you for that.
I figured I'd wait a day or two before sharing your website with my son and his girlfriend but when I called him earlier to check on them, they had already found and read your entire website too. We talked about the different things we read and the pictures we saw and it really did help take away some of our fears. Ty is an absolutely gorgeous baby boy and my family would like to express our gratefulness to you all for sharing your story.
hi lisa my name is kristyna and the docotor told me the same thing that my baby had gastrochisis.i went threw a tough situation beacause i didnt kno what it was until i searched it up and i read ur story about ur baby it calmed me down alot knowing i wasnt the only one with this situation im trying to not think about it but i do everyday it worries me alot thinking my baby wont develop well so i wanted to ask u if ur belly developed all around and at how many months because im turning 5 months this thursday and it just looks like i gained alot of pounds and dnt look it so can u please answer this question for me thank u
I was only 15 when I found out I was pregnant. I went to the regular doctor and everything seemed fine at first. Then one day my mom called and told me I had an appointment at the hospital because my AFP was high. None of the doctors told ME this, which I thought was rude, I had to find out something was potentially wrong from my mom. Well at the ultrasound the nurse told me my AFP was high and that it was a sign of Spina Bifida and at the time I had no idea what that even was. She quickly into the ultrasound told me it was gastroschisis, or in her words "only gastroschisis", even thought I didn't know what that was either I felt relived to hear her say "ONLY". They explained what gastroschisis was and what I would be going through, then they asked if I wanted to terminate my pregnancy, I assume because they thought there was no way a 15 year old could handle this, they said it was because of her chances of not making it. I looked at the doctor and told them that if I kill her she has no chance of making it and no.
A few weeks later I had really low amniotic fluid and they told me to drink LOTS of water. Well I followed they're directions and thought I was leaking fluid at around 24 weeks so they put me in the hospital to be sure. I wasn't thankfully but they still wanted to keep me to get my fluid up. They gave me shots of steroids to build her lungs up in case she came early. I was released after 3 weeks but on severe bed rest. I followed everything they told me to do and was finally able to move around a little bit at 30 weeks.
Then at on Friday Nov. 1 at 34 weeks I started having contractions and went to the hospital. I was 2 cm dilated so they gave me a shot to try to stop labor. That only worked until the next morning and I was back into labor, they gave me another shot. This time it worked until late that night and so they gave me a heavier shot that made me so dizzy I didn't remember leaving or getting home. That one worked, so on Monday I went to the doctor and she told me I was 4 cm dilated and she would meet me at the hospital at noon for my c-section. She was 3lb 9oz and 17 inches long. After I was all sewn up they rolled me to see her before her surgery. She went into surgery an hour after birth and did great. They didn't get it all in because she had the biggest case that surgeon had seen. My husband stayed in the NICU the whole night with her. I got to get up and see her the next day, she was sooo tiny, and she had tubes going in her to her stomach and lungs and her arms were banded to these boards with IV's in her arms so she wouldn't knock them out.
Leaving the hospital without her was the hardest thing I ever had to do. They gave me a number I could call anytime to get updates on her and I used it often. I would go see her for at least 3 hours everyday and then call a few times, especially before I went to bed and some point in the middle of the night. They didn't mind. She had her second surgery at 2 weeks and they got the rest of it in and put a broviac line in, which was so they wouldn't have to poke her every time they needed blood. She did really great. She got to come home after 43 days, just before Christmas, it was the best day of my life.
After coming home she was the best baby, never cried, she was so easy going. Today she is 5 almost 6 and doing amazing. She starts school in a few weeks and is amazingly smart. The only problem we have had to deal with is constipation and new doctors asking if I want to get her plastic surgery to give her a belly button. Its not up to me to decide that, I love her button-less belly and so does she. If changes her mind and wants the surgery when she is older I will respect her wishes but will be kinda sad. Its like a little reminder of how strong she is and all we went through to get her home.
I hope this helps some of you out there just beginning your journey through this. Be strong, I never once thought I wouldn't bring my baby home, somehow even though I am a worrier I knew I would have her in my arms soon enough. I proved those doctors who thought I couldn't handle the situation wrong and have knocked down stereotypes right and left. Thank you for this site I have always wanted to help someone who might be going through it also, this is great.