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Gastroschisis

What is gastroschisis?

Gastroschisis (pronounced gas-troh-SKEE-sis) is a hole in the muscles and skin that cover the belly (abdomen). Normally the abdominal wall completely closes around a baby's organs as they develop. In gastroschisis, a hole remains to the side of the umbilical cord. Usually this hole is on the baby's right side. The baby's intestines, stomach, and sometimes other organs poke through this hole, leaving them outside the baby's body at birth.

Gastroschisis is an abdominal wall defect that has some similarity to another birth defect called omphalocele. Gastroschisis tends to be associated with few other problems. In contrast, babies with omphalocele can have many other associated problems.

Who gets gastroschisis?

This condition affects 1 to 2 in 10,000 children. It's more common in babies who have younger mothers. Doctors don't know the cause.

What are the symptoms?

Before your baby is born, you would not notice any symptoms related to your baby's condition. Often doctors notice gastroschisis on an ultrasound taken of the baby before birth. Mothers may have polyhydramnios, or excess fluid around the baby in the womb. After birth, your baby may have symptoms if any organs were pinched, twisted or damaged because they passed through the hole. Your doctor will specifically look for these problems at birth. About 10% of babies with gastroschisis have intestinal atresia, which means part of their intestine did not form completely.

Once your baby is born and the gastroschisis is corrected, the main symptom is feeding problems. Often this occurs because infants with gastroschisis have shorter intestines than usual. So they may have some trouble absorbing nutritients at first. In time, however, more than 95% of these infants are able to eat and gain weight normally.

How do you diagnose gastroschisis?

In most cases, doctors see gastroschisis during a routine ultrasound before the baby is born. Routine blood tests for pregnant women may also show that your level of alpha-fetoprotein (AFP) is high, a sign of gastroschisis. If this happens, then doctors can work with you to plan the treatment your baby will need after birth. Your doctor may talk with you about having genetic tests, such as amniocentesis, before your baby is born to check for other problems with development. Most babies with gastroschisis have no other development problems, but some may have intestinal atresia.

Once your baby is born, the doctor will see the gastroschisis during a physical exam. Your baby may need tests to tell whether he or she has any other health problems.

What is your experience with gastroschisis at Children's?

We have taken care of well over 100 children with gastroschisis at Children's since 1996 and many more prior to that. We usually see 10 to 15 infants each year with this condition. While most institutions report some deaths among their patients with gastroschisis, we have had none in the past decade. Our surgeons are experienced at performing the operation these children need to place their organs inside their abdomen and close the hole. In addition, we have a great deal of experience treating the post-operative problems and feeding issues that many of these children may encounter.

When you come to Children's, you have a team of people to care for your child before, during and after surgery. Along with your child's surgeon, you are connected with doctors trained to care for new babies with complex problems (neonatologists), nurses, dietitians, child life specialists, social workers and others. We work together to meet all of your child's health needs and help your family through this experience.

Since 1907, Children's has been treating children only. Our team members are trained in their fields and also in meeting the unique needs of children. For example, the doctors who give your child anesthesia are board certified in pediatric anesthesiology. This means they have extra years of training in how to take care of kids. Our child life specialists know how to help children understand their illnesses and treatments in ways that make sense for their age. Our expertise in pediatrics truly makes a difference to our patients and families.

How do you treat gastroschisis?

Babies with gastroschisis need surgery soon after birth. Because of the special level of care they need, it's best for these babies to be born at a hospital that has a neonatal intensive care unit (NICU). Then they can be transferred to the Children's NICU for care after surgery.

Surgery

When your baby is born, your surgeon will use one of several methods for taking care of your baby's intestine, or bowel. The surgeon may recommend going to the operating room right away to place the bowel in the abdomen or may recommend placing the bowel into a see-through plastic bag. This bag fits into the hole in the abdomen. A spring-loaded ring holds it in place. The bag is called a temporary silo. It helps protect the organs from injury, and it keeps fluid and heat in. Loss of fluid and heat are the two major problems for babies before their gastroschisis is corrected.

Then we will bring your baby to the NICU to stabilize them. For example, your baby will need an IV (short for intravenous) line, a tube that goes into a vein to give fluids. Some babies need to be on a breathing machine (ventilator) to assist their lungs. The timing of surgery will depend on your baby's condition, which your surgeon and medical team will monitor closely.

Making space in the abdomen

One problem linked with gastroschisis is that the abdominal space did not grow large enough for the bowel to fit inside the belly because the bowel developed on the outside. Most of the time, the surgeon can stretch the abdomen, fit all of the bowel inside, sew the hole closed, and make a new belly button. In about 15% of infants, the bowel will not fit inside the belly without causing too much pressure inside. This could lead to problems with the heart, lungs and blood supply to the bowel.

To tell whether the bowel will fit inside the belly, we measure the pressure in the abdomen when we try to put the bowel inside. If the pressure is too high, we will place a silo on the baby's abdomen. This silo is different than the one mentioned before because we sew this silo to the baby's abdominal wall. This way we can slowly squeeze the baby's bowel into the abdomen over 5 to 10 days. Then we take the silo off and sew the abdomen closed. By squeezing the bowel in slowly, we can avoid problems with the heart, lungs and blood supply to the bowel. Fortunately most babies do not need this and can have their bowel placed inside the abdomen the first time around.

If your baby also has intestinal atresia, this will require further surgery to correct. Your doctor will discuss the timing of this surgery with you.

After surgery

After surgery, it may take time for your baby's intestines to start working well. This may take anywhere from one week to several months. So your baby will likely have to get feedings for a while through a tube that goes into a large vein (called a central line) or a tube that passes through the nose or mouth into the stomach (called a nasogastric tube, NG tube, or orogastric tube, OG tube). We will give your baby pain medicine to make them comfortable.

As your baby's health improves, we will be able to move them from the NICU to a regular hospital room and eventually to home. The severity of gastroschisis can vary widely. So can the length of the hospital stay. Your baby will need to be in the hospital at least until all the organs are moved, the hole is closed and they are able to eat well. This will take weeks to months. The average length of stay in the hospital is a little over one month.

Resources

Read more about what to expect when your child visits a clinic at Children's, has surgery here or needs to stay in the hospital. You can get practical details about topics like what to do and bring the day of surgery and who will be on your child's care team. You can also take a virtual tour of our surgery rooms and other parts of the hospital.

To learn more about this condition, you may want to visit our resource list.

Also, these scientific articles, written by Children's Hospital doctors, have more technical details about treatment for gastroschisis: