The below information has been obtained by the Cincinnati Children's Hospital website and is not medical advice.
What is gastroschisis?
Gastroschisis is an opening in the abdominal wall that allows the stomach and small and large intestines to extend outside the body. This occurs during fetal development. The opening almost always occurs to the right of the navel (umbilicus) and is usually less than two inches in size. With the abdominal contents outside of the body and no protective sac covering these contents, the intestine is exposed to amniotic fluid, which may irritate the bowel, causing it to swell and shorten. The damage becomes more severe with prolonged exposure to amniotic fluid.
As the fetus grows, the small tight opening may decrease the blood supply to the intestine and / or the bowel may twist around itself. Both of these problems can result in poor bowel function after the baby is born. This can lead to long-term feeding problems.
Gastroschisis is an uncommon birth defect, seen in about 1 of 5,000 births. Although about 10% of infants with gastroschisis have an intestinal atresia in which a portion of the intestine does not develop, the defect is rarely associated with other genetic abnormalities.
What causes gastroschisis?
The cause of gastroschisis is unknown. It occurs early in fetal development. Rather than developing normally, the abdominal wall tears on the right side of the navel. As a result, the intestine extends through the opening and outside the body of the fetus.
How is gastroschisis diagnosed?
Gastroschisis is often diagnosed prenatally and can be seen on ultrasound as early as the 14th week of pregnancy. When maternal alpha-fetoprotein (AFP) levels are elevated, obstetricians look for defects by having the expectant mother undergo a detailed prenatal ultrasound. With gastroschisis, this test will show loops of bowel (intestines) floating freely in amniotic fluid. More frequent ultrasounds are generally recommended to continue monitoring the fetus. The mother is usually referred to a pediatric surgeon for consultation and counseling.
Making arrangements for delivery
Once the diagnosis is made, you might want to plan for your baby to be delivered in a hospital with a neonatal intensive care unit, where he / she can receive the special care that will be required. If ultrasound tests indicate that the baby's lungs are mature, you may be advised to have a cesarean section at about 36 weeks of pregnancy. Surgery for the gastroschisis will be done as soon as the infant's condition is stabilized, usually within 12 to 24 hours after delivery.
How is gastroschisis treated?
When the amount of bowel outside the abdomen is small, complete repair can be done with one operation; this is possible in approximately two-thirds of cases. This procedure returns the bowel to the abdominal cavity and closes the opening.
If the amount of bowel outside the abdomen is large, or if the baby's condition is unstable, the repair may need to be done in several steps (staged). This staged procedure usually occurs over three to 10 days but can take longer in some cases. A silastic (silicone plastic) pouch is first placed over the baby's exposed bowel and anchored to the surrounding muscle. Each day, the pouch is tightened to push the intestine back into the abdominal cavity. When the intestine is back in its proper place within the abdomen, the pouch is removed and the opening is surgically closed. Some babies may need the help of a breathing machine (ventilator) during this time.
What is the long-term prognosis?
In most babies, the long-term prognosis is good. Nevertheless, some babies who have sustained injuries to the bowel due to direct contact between the intestines and amniotic fluid, or due to the intestine being twisted or damaged during fetal development or delivery, may develop short gut syndrome. Diarrhea, slow weight gain and deficiencies of essential vitamins and minerals are symptoms of this condition. Babies with short gut syndrome may require a prolonged course of intravenous nutrition (TPN) delivered at the hospital or at home, and will need to be closely monitored by your pediatric surgeon, pediatric gastroenterologist and primary care physician.
The doctors will tell you about all of the potential complications that can happen during the rest of the pregnancy. They told us and I was scared to death most of the rest of the pregnancy, just waiting for something else to go wrong. IT NEVER HAPPENED. If I weren't such a worrier, I could have enjoyed the rest of my pregnancy. Am I angry with the doctors? No, they have to tell you about the worst-case scenario or else you could sue them later. But I'm telling you this so that you don't spend time worried sick over all of these things like I did. Enjoy your pregnancy. No matter what happens, you'll never have another chance to enjoy this particular pregnancy. Start now!
The below information has been obtained from the March of Dimes website and is not medical advice.
Low Amniotic Fluid - Oligohydramnios
When a woman has oligohydramnios, the level of amniotic fluid surrounding the baby is too low.
Oligohydramnios occurs in about 8 out of 100 of pregnancies. It is most common in the last trimester of pregnancy, but it can develop at any time in the pregnancy. Oligohydramnios is diagnosed with ultrasound. This may affect you, your baby, and your labor and delivery in different ways. The effects depend on the cause, when the problem occurs, and how little fluid there is.
I was checked at every ultrasound for low amniotic fluid levels. Not once was there an actual concern about the amount of fluid that I had.
High Amniotic Fluid - Polyhydramnios
When a woman has polyhydramnios, the level of amniotic fluid surrounding the baby is too high.
Polyhydramnios occurs in about 2 out of 100 of pregnancies. Most cases are mild and result from a slow buildup of excess fluid in the second half of pregnancy. But in a few cases, fluid builds up as early as the 16th week of pregnancy. This usually leads to very early delivery.
Polyhydramnios is diagnosed with ultrasound. Women with mild polyhydramnios may have few symptoms. Women with more severe cases may have discomfort in the belly and breathing problems. That's because the buildup of fluids causes the uterus to crowd the lungs and the organs in the belly.
Intrauterine Growth Restriction (IUGR or Small for Dates)
Intrauterine growth restriction is a term used to describe a condition in which the fetus is smaller than expected for the number of weeks of pregnancy. A fetus with IUGR often has an estimated fetal weight less than the 10th percentile. This means that the fetus weighs less than 90 percent of all other fetuses of the same gestational age. A fetus with IUGR also may be born at term (after 37 weeks of pregnancy) or prematurely (before 37 weeks).
Newborn babies with IUGR often appear thin, pale, and have loose, dry skin. The umbilical cord is often thin and dull-looking rather than shiny and fat. Babies with IUGR sometimes have a wide-eyed look. Some babies do not have this malnourished appearance but are small all-over.
The doctors repeatedly told us to expect Ty to be a small baby. At every ultrasound he measured right on for the number of weeks I was pregnant. In the third trimester he started to measure larger than average. We were told that it was unheard of for a baby with gastroschisis to measure above average, but it happened to us. The bigger your baby is, the better outcome you can expect.
If you start having regular contractions that cause your cervix to begin to open (dilate) or thin out (efface) before you reach 37 weeks of pregnancy, you're in preterm labor, also known as premature labor. If you deliver your baby before 37 weeks, it's called a preterm birth and your baby is considered premature. You may end up having a spontaneous preterm birth if you go into labor prematurely, if your water breaks early (called preterm premature rupture of the membranes or PPROM), or if your cervix dilates prematurely with no contractions (called cervical insufficiency).
Premature babies born between 34 and 37 weeks generally do very well. If you go into labor before 34 weeks, your medical team may be able to delay your labor for a few days so your baby can be given corticosteroids to help his lungs develop faster, which increases his chance of survival.
What happens now that you have the diagnosis?
We are in the Cincinnati metro area, so we were immediately referred to Cincinnati Children's hospital and the Seaton Center at Good Samaritan Hospital. My OB/GYN transferred my care to the Seaton Center, as they are a high-risk group.
We spent a full day at Children's hospital getting ultrasounds, a fetal EKG, taking a tour of the NICU and meeting with the doctors that would be in charge once Ty was born. The doctors sat us down at the end of the day and talked about the test results.
Ty did not have any heart problems, but the amount of intestine that showed on the ultrasound was more than they wanted to see. This meant that he would not be able to have surgery right after he was born. He would have to go to the NICU and get a silo put on that would hold the intestine and would allow gravity to push the intestine into his abdomen gently over a weeks time.
The doctors explained that Ty would have surgery at about 5-7 days to close the hole in the abdomen and that he wouldn't have much of a belly button afterwards. They went on to tell us the rough outline of how the rest of his NICU stay would go. He would need a few days to rest after the surgery and then they would start introducing breast milk or formula via a feeding tube. After a week or so they would then start allowing him to try bottle-feeding in very small amounts. Over time he would work up to taking a full bottle and then would be able to go home. Assuming no complications, of course.
We had the following tests schedule for us:
Level 2 ultrasound - This test is similar to a regular ultrasound but the doctors are able to see more detail. They will be able to see and measure the amount of amniotic fluid and the amount of exposed intestine. They will monitor the growth of the baby and be able to see if there are any other issues to be concerned about.
Fetal ECG - This test is performed just like an ultrasound. The doctors are looking at the heart to check for any abnormalities.
Nonstress test (NST) - During this test two belts are placed on your abdomen. One measures the heart rate/activity level of the baby and the other is measuring contraction activity. Sometimes the baby is not very active and a buzzer is used to 'wake up' the baby and get them moving around. This test is done to measure how the baby's heart beat increases in relation to its own movement. A healthy baby's heart rate will go up when it is moving around. The test also monitors contraction activity as mom's that have NST's are often at risk of pre-term labor.
I went through all the normal pregnancy blood work in addition to the above tests. We were scheduled to have a level 2 ultrasound every month till I was 8 months, then every week from there out. Starting at the beginning of the 3rd trimester I was scheduled for nonstress tests twice a week. It was during a nonstress test that the nurse noticed Ty's heart rate dropping when I had contractions, that was at 9AM. Ty was born at 5:24PM that same day via emergency C-Section.