What is gastroschisis?

Gastroschisis is a condition in which your baby’s intestines are outside of the body when he/she is born. This happens because of a hole or problem in your baby’s abdominal wall (stomach area) on one side of the umbilical cord.

Sometimes, other organs are also outside of the body, like the liver, the testes (in boys) or ovaries (in girls).

What causes gastroschisis?

We aren’t sure what causes gastroschisis, but we do know that it’s no one’s fault. Gastroschisis happens very early on in your pregnancy. It’s not caused by something you did or didn’t do.

How common is gastroschisis?

Gastroschisis is a common congenital condition in babies. About 1,800 babies born in the United States are born with gastroschisis. A congenital condition is a condition that your baby is born with.

It can’t be inherited (passed on from parent to child). The risk of future siblings also having gastroschisis is very low.

What is the treatment for gastroschisis?

Surgery is the only treatment for gastroschisis. At your consult with doctors from the MGfC Fetal Care Program, the pediatric surgeon will explain the surgery to put the intestines back into the body and close the hole in your baby’s stomach. Read “What are the types of surgery for gastroschisis?” on page 2 of this handout to learn more about the type of surgery your baby might have.

What happens after my baby is diagnosed with gastroschisis?

Here is what you can expect after your baby has been diagnosed with gastroschisis:

  • Your obstetrician or maternal fetal medicine doctor will refer you to the Fetal Care Program at Mass General for Children (MGfC).
  • The nurse coordinator from the Fetal Care Program will call you to schedule all requested tests and consults. The nurse coordinator will try to schedule all of the tests and consults on the same day.
  • One of the consults you’ll have is with a pediatric surgeon. The pediatric surgeon will explain the surgery to put the intestines back into the body and close the hole. He/she will also explain how to care for your baby after the surgery.
  • After the tests and consults are done, we will send the results and information to your obstetrician and maternal fetal medicine doctor. Your doctor will help you plan your delivery with the appropriate MGfC specialists (doctors who treat specific problems).

How will I deliver my baby?

You will talk with all of your baby’s doctors about the safest and best way to deliver your baby. Babies can be born vaginally or by C-section. This is your choice to make with your baby’s doctors. The timing of your delivery depends on your baby’s age, growth, the level of amniotic fluid and test results.

What can I expect after I deliver my baby?

  • Your baby will be transferred to the Neonatal Intensive Care Unit (NICU) after delivery. Your baby will be watched closely by our specialized nurses and doctors.
  • The surgeon will put your baby’s intestines in a protective pouch called a silo. The silo helps protect the intestines, keep the intestines moist and prevent heat loss.
  • Your baby will be put into a warmer or isolette to help him/her stay warm. The doctors will attach monitors for breathing, heart rate, blood pressure and oxygen levels.
  • Your baby will have an IV for fluids and antibiotics to prevent infections. An IV is a tube that helps the body take in medication, food, water or supplements. He/she will also have a nasogastric (Ng) tube (a tube that goes into the nose and down to the stomach) or an orogastic tube (a tube that goes into the mouth down to the stomach) to help keep his/her stomach empty before surgery. The tubes will be in place until your baby is ready to eat by mouth.

What can I expect after surgery?

  • Your baby will be on pain medication to keep him/her comfortable and pain-free. The pain medications can also help your baby rest and heal better. As your baby heals, doctors will lower the amount of pain medication.
  • Your baby will be on a ventilator (breathing machine). The ventilator will be removed when your baby recovers from surgery and can breathe comfortably.
  • At first, your baby can’t eat through his/her mouth. The intestines need time to heal and start working properly. We will give your baby TPN (total parenteral nutrition) through an IV. TPN is a type of food that has all of the calories and nutrients your baby needs. As the intestines heal, we will slowly add breast milk or formula to your baby’s diet.
  • A feeding specialist will help your baby with feeding when his/her intestines are healing and starting to work properly. The NG tube or orogastric tube will be removed when your baby can eat properly.

What are the types of surgery for gastroschisis?

There are 2 types of surgery for gastroschisis. The type of surgery your baby will have depends primarily on how swollen or inflamed the intestine is, how much is outside the abdomen and the size of the baby.

Primary repair

A primary repair is when the surgeon will put all of the intestines back into your baby’s stomach and close the hole.

Staged surgery

The surgeon will put your baby’s intestines inside a protective pouch called a silo. Over time, gravity will let the intestines drop down into the stomach. Every day, the surgeon will gently push the intestines from the silo into your baby’s stomach. This doesn’t hurt your baby, but he/she will have pain medications to help with healing after surgery. When all of the intestines are inside, the surgeon will close the hole.

When will my baby go home?

Your baby will go home when he/she maintains a normal temperature, can eat well and gains enough weight.

Usually, babies stay in the hospital for 6-8 weeks. Some babies who do well go home earlier. Some babies might stay longer so their intestines can heal and start to work properly.

What is the long-term outlook once my baby is treated for gastroschisis?

After surgery, your baby’s long-term outlook should be very good. But, your baby might need extra care from specialists. These specialists might include gastroenterologists (stomach and intestine doctors), feeding therapists and occupational therapists (therapists who help people learn skills to help with daily living).

Almost all babies survive the surgery and grow up to live happy, healthy lives. The most common risks with surgery are infections and trouble feeding.