Problems In Pregnancy: Gastroschisis - Aiden's Story

Imagine it's 5 am and snowing outside. Now, imagine you're pregnant and going into labor when you're only nineteen years old. This can be a very scary scenario even for an uncomplicated pregnancy.

But Melissa knew there were no guarantees. Her baby boy had been diagnosed with gastroschisis, a birth defect in the abdominal wall that causes the intestines to spill outside the body.

Today, I want to introduce you to Melissa and her son Aiden. Melissa discovered she was pregnant soon after graduating high school. Although she was filled with excitement, her early OB visit would reveal some serious problems with her baby.

"I was 19, alone in an exam room being told that my child was going to be born with a birth defect."

Watch Part One of Melissa's journey from proud graduate to scared mama facing a serious issue with her son, Aiden.

You're going to be so inspired by her story. And stay tuned for Part Two next week.

With the help of her family and a team of medical people that cared about her and Aiden, she got through this and is stronger than ever today.

Doctor's note: please bring tissues. Their story is incredibly powerful.

In about one in every ten thousand fetuses, the wall of the abdomen does not completely close.

A small opening remains, usually just to the right of the belly button. This opening is called a gastroschisis. The fetus' intestines start to protrude through the abdominal wall, and on ultrasound, we see little loops of bowel floating in the amniotic fluid next to the abdomen. Your OB may see the gastroschisis on a routine ultrasound examination, or an abnormal opening in the baby may be suspected if you have an elevated MSAFP test.

Gastroschisis is not usually associated with an increased risk of a chromosome or genetic abnormality; it typically happens out of the blue, with no other anomalies present. Most birth defects are more common in overweight women. Gastroschisis is an exception; it is more common in young, slender women.

If your baby, like Melissa's, is diagnosed with gastroschisis, your pregnancy will be followed more closely than usual. In Melissa's case, we saw her every month for ultrasounds so that we could monitor the growth of the fetus and look for any other abnormalities that might have been present.

We talked with her about the need to deliver her baby in a place with a Neonatal Intensive Care Unit and pediatric surgeons, since surgery would be necessary right after delivery. Sometimes, this means changing your OB provider or the delivery hospital. Fortunately, Melissa's OB planned to deliver the baby downtown, where there is a great NICU.

We referred her to the pediatric surgeon for a prenatal consultation. This is a great opportunity to ask questions. The better prepared you are, the less scary this process is.

Starting at about 28 weeks, we saw her once or twice weekly for fetal testing. We monitored for contractions, traced the fetal heart rate to look for signs of stress, and did ultrasounds to watch the baby’s movement and amniotic fluid volume, and to watch the intestines for swelling.

Earlier delivery may sometimes be necessary if we see concerning signs – swelling of the bowel, changes in the fetal heart rate tracing, or decreased fetal movement. Vaginal delivery is possible with gastroschisis, although cesarean delivery may be needed if there are signs of fetal stress.

At the time of delivery, the exposed intestines are usually covered with a plastic bag. This prevents the bowel from drying out, losing heat, and getting infected. In Melissa's case, the abdomen had already closed prior to delivery. The NICU staff made sure that the baby was breathing well, then they rolled him over to Melissa, where she was able to say hello and touch the baby.

Then away little Aiden went to the NICU, where preparations were made for surgery. An IV line was placed in one of his umbilical cord blood vessels. The surgeon wanted to obtain X-rays and other images.

In most cases, the surgery is straightforward; the bowel is slipped right back into the abdomen and the defect is sutured closed. In other cases, a little silo is placed on top of the abdomen, so that the intestines can start to return to the abdomen as swelling improves. Occasionally, the bowel has been damaged by life inside the uterus – loops of the intestine can twist or swell and lose blood flow, be irritated by exposure to the amniotic fluid, or just not form right to begin with. In Aiden's case, the abdominal wall defect closed before he was delivered. The segments of intestine that were outside his body lost their blood supply and were lost, resulting in “short bowel syndrome.” This problem can also occur when segments of bowel twist or are malformed. Babies with short gut will have more challenges – poor weight gain, diarrhea, feeding tubes, and prolonged hospitalization. Depending on how difficult the repair, babies with gastroschisis will stay in the hospital for several weeks, learning to eat and grow. Aiden has had multiple hospitalizations and procedures but he is an adorable and healthy growing boy.

In many cases of gastroschisis, no complications arise, feedings begin within a few weeks of delivery, and once the baby is gaining weight, they go home. A year later, you can’t even see the scar on their tummies.

Watch Melissa's story; her courage is really inspiring, and could help you face whatever challenges you're dealing with right now.

Don't forget that next week, Melissa will be sharing the rest of her story and the outcome of Aiden's delivery and health.