Digestive and Gastrointestinal Conditions

Gastroschisis

What is gastroschisis?

Gastroschisis (gas-troh-SKEE-sis) happens when the muscles and skin that cover a baby’s belly do not form all the way before birth. As a result, the baby’s bowels poke through an opening in their belly, and the baby is born with their bowels outside their body. Sometimes babies are also born with part of the stomach outside their body. Even though this sounds scary, most babies born with gastroschisis do very well as long as they get the medical care they need.

Gastroschisis is sometimes confused with a more serious condition called omphalocele. Children with omphalocele are born with several organs in a sac outside their belly. They often have other birth defects.

  • As a baby grows inside the womb, some of the baby’s organs move through a hole in the body wall, out of the belly and into the umbilical cord. This is normal. Later in normal development, these organs move back inside the baby’s belly and the hole in the body wall closes. In gastroschisis, the organs do not move back inside the baby’s belly. Instead, they stay outside the belly, and the hole in the body wall stays open.

    Doctors do not know why this happens.

Gastroschisis at Seattle Children’s

Of all the hospitals in the Pacific Northwest, Seattle Children’s has the most experience treating babies with gastroschisis. Our surgeons have treated hundreds of children with this condition.

If you would like an appointment, ask your pregnancy care provider to refer you to our Prenatal Diagnosis and Treatment Program. If you would like more information or have a referral, call 206-987-5629 to schedule an appointment.

    • Gastroschisis treatment often starts with our Prenatal Diagnosis and Treatment Program. Finding a problem early gives you more time to choose options and plan for your baby’s treatment.
    • We coordinate carefully with your birth hospital. This helps prepare for the special care your baby will need during delivery, at birth and as they travel to Seattle Children’s soon after birth.
    • Our transport team of physicians, nurses and respiratory therapists are national leaders in safely moving fragile newborns.
    • Each year we treat at least 20 babies with gastroschisis. We have all the experts your child needs. Your healthcare team will include specialists in newborn care (neonatologists), pediatric surgery, nutrition and the digestive system (gastroenterologists).
    • Our surgery team has repaired gastroschisis in hundreds of babies. We are experienced in treating other bowel problems that sometimes affect babies with this condition, including intestinal atresia.
    • Seattle Children’s has the state’s first Level IV Neonatal Intensive Care Unit (NICU), the highest level of care. We are skilled and equipped to care for the sickest newborns.
    • We carefully assess your child to decide the best treatment for them. This includes any breathing support they may need and the best timing of surgery.
    • For many babies, our surgeons can repair gastroschisis without stitches or general anesthesia. This may lower your baby’s chance of infection or other problems.
    • Your newborn needs care designed just for them. Babies do not react to illness, pain, medicine or surgery in the same way as older kids or adults. That’s why our surgeons are all board certified in pediatric surgery.
    • We focus on how today’s treatment will affect your child as they develop and become an adult. We base treatment plans on years of experience and the newest research on what works best and most safely.
    • Having a baby born with gastroschisis can be scary. We take time to explain your child’s condition. We help you fully understand your treatment options and make the choices that are right for your family.
    • Our doctors, nurses, child life specialists and social workers help your family through the challenges of this condition. We connect you to community resources and support groups.
    • Our nurses and lactation specialists help you provide your baby with breast milk, whether you are breastfeeding or pumping.
    • At Seattle Children’s, we work with many children and families from around the Northwest and beyond. We can help with financial counseling, schooling for other children in the family, housing, transportation, interpreter services and spiritual care. Read about our services for patients and families.
  • Our multidisciplinary research team brings together pediatric surgeons, neonatologists, radiologists and maternal fetal medicine specialists from the University of Washington and Seattle Children’s. Our research projects include: 

    • Tracking outcomes of different procedures to understand the best approach in different situations
    • Doing a cost analysis of the different procedures
    • Studying how ultrasound imaging during pregnancy predicts outcomes in babies born with gastroschisis

Your gastroschisis journey (Video: 28:44)

Learn what gastroschisis treatment is like from families whose babies were treated at Seattle Children’s.

Symptoms of Gastroschisis

You are not likely to notice any signs or symptoms while you are pregnant. This condition is often diagnosed during a routine ultrasound.

After birth, your baby may have symptoms related to gastroschisis, especially if any organs were damaged when passing through the hole in your baby’s belly. Your doctor will look for these problems when your baby is born.

About 10% of babies with gastroschisis have intestinal atresia. Their bowels (intestines) have not formed all the way. Some babies are born smaller than babies without this condition.

Diagnosing Gastroschisis

In most cases, doctors find gastroschisis during an ultrasound before a baby is born. Blood tests for pregnant women may also show a high level of a protein called alpha-fetoprotein (AFP).

Our Prenatal Diagnosis and Treatment Program can work with you and your doctor to plan your prenatal care and your baby’s treatment. Our prenatal experts will talk with you about having genetic testing to check for other problems. Most babies with this condition do not have a genetic problem.

Treating Gastroschisis

All babies with gastroschisis need surgery shortly after birth to put their bowels back into their bellies. The type of surgery your baby will need depends on their health and the size of their bowels compared to how much room is in their belly. Your surgeon will talk to you about the best treatment plan for your baby.

Because of the special care your baby will need, it is best for them to be born at a hospital that has a neonatal intensive care unit (NICU). A cesarean section (si-ZAIR-ee-un SEK-shun) is rarely needed for babies with gastroschisis. Right after delivery, a special plastic bag is placed over your baby’s belly, covering everything from their feet to armpits. This protects the bowels and keeps them warm and moist until surgery.

  • Many parents choose to have their babies come to Seattle Children’s soon after birth because of our expertise. Our transport team is very experienced in safely moving fragile newborns. Once your baby arrives at Seattle Children’s, they will get the highest level of care in our Level IV NICU

    • We monitor their breathing.
    • We use an intravenous (IV) tube to give fluids and antibiotics.
    • Your baby will also have a tube from their nose or mouth to empty their stomach (nasogastric or NG tube).
    • Some babies need to be on a breathing machine (ventilator) for a while to help their lungs.
  • Gastroschisis is repaired by closing the opening in the baby’s belly. The most common type of closure done at Seattle Children’s is called “primary umbilical closure.” The surgeon places the bowels into the belly and wraps the umbilical cord over the hole. No stitches are needed. A dressing placed over the top protects the area while it heals.

    This method may lower your baby’s chance of infection or other complications. Many babies who have this procedure do not need medicine to sleep without pain during surgery (general anesthesia). Sometimes, the surgery can be done at your baby’s bedside. It depends on your baby’s health, anatomy and the health of their bowels.

  • Sometimes gastroschisis is repaired with “primary surgical closure.” This is when the surgeon places the bowels into the belly and sews the belly closed in 1 surgery. Your baby may need this if either: 

    • The opening in the belly wall is large.
    • It is difficult to put the bowels back into the belly.
  • In one-third to one-half of babies with gastroschisis, the belly is not big enough to put all the bowels back right away. Surgeons hang a “silo” of plastic material above the baby’s bed and attach it to the baby’s belly wall. The silo is a bag that protects the bowels. Often this can be done at the bedside and the baby does not need general anesthesia.

    Over 5 to 10 days, the bowels slowly move into the baby’s belly, sometimes with the doctor gently pushing. This lets the belly stretch and prevents damage to other organs.

    When everything is back inside, surgeons remove the silo. Most often, these babies need medicine to sleep without pain while surgeons close the opening in the belly with stitches. But sometimes surgeons can use the baby’s umbilical cord to close the hole without stitches. This is called a staged closure.

  • After surgery, your child will continue to receive the highest level of care in our Level IV Neonatal Intensive Care Unit (NICU). Babies with gastroschisis often spend less time in the NICU at Seattle Children’s than at other hospitals because of our experience helping babies heal.

    We give your baby pain medicine as needed for their comfort. When your baby is stable and does not need a breathing machine, they will move to a regular hospital room. Most often, this happens a few days after the bowels are moved back into the belly.

    Even though you may not be able to hold your baby at first, you can be right at their bedside. We want you to spend as much time as you can touching and talking to your baby.

  • It can take 1 week to a few months for your baby’s bowels to start working well. Your baby will likely need to be fed through a tube that goes into a large vein (central line). Some babies may need a tube that passes into the stomach through the nose (nasogastric tube or NG tube) or mouth (orogastric tube or OG tube).

    When their bowels have recovered, we start your baby with formula by mouth if they can accept it. Our nutritionists keep a check on your baby to be sure they are growing well.

    Our nurses and lactation specialists will do all that we can to support you in giving breastmilk to your baby. We help you with breast pumping and storing your milk. This keeps your milk flowing and builds a milk supply for your baby. When your baby is ready, our nurses and feeding therapists help with the transition to feeding by bottle or breast.

    Your baby will stay in the hospital until they can feed well, poop normally and gain enough weight. For most babies this takes about 6 weeks. If your baby is missing part of their bowels (intestinal atresia), they may need to stay longer.

    When your baby is ready to go home, they may need medicine or a feeding tube in their nose (NG tube) for part of their nutrition. Our nurses will help set up the supplies and equipment you need. You will have plenty of time to practice all your baby’s care before going home.

  • Before your baby goes home, we urge you to choose a doctor for your baby so we can explain your child’s condition and follow-up care they may need. Like all babies, your child will need regular well-baby visits.

    We will see your baby for follow-up visits to check that they are feeding well and gaining weight. Your child will likely visit: 

    • 2 weeks after leaving the hospital
    • 1 or 2 months after that
    • When they are 6 months old
    • At 1 year of age
    • Once a year after that 

    If there are issues with growth or healing, we see your child more often. The first year can be full of clinic visits, and we will track your child’s growth and nutrition. But most children with gastroschisis go on to live healthy lives. Our doctors and nurses are always here to help you and to answer questions.

Contact Us

If you would like an appointment, talk with your pregnancy care provider about a referral to our Prenatal Diagnosis and Treatment Program. If you would like more information or have a referral, call 206-987-5629 to schedule an appointment.

Providers: See how to refer a patient.