Digestive and Gastrointestinal Conditions


What is omphalocele?

Omphalocele (pronounced um-FAL-uh-seel) is a hole (hernia) in the muscles and skin at your child’s belly button. In babies with omphalocele, the intestine or other organs in the belly (abdomen) poke out of the hole. The organs outside the belly are usually covered by the layers of the umbilical cord (the omphalocele sac).

Omphalocele affects 1 to 2 in 10,000 children. It’s more common in babies of mothers over age 35.

  • As a baby grows inside the mother’s womb, some of the baby’s abdominal 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 omphalocele, 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. This does not cause symptoms before birth, but you and your baby’s doctor will see the signs after your baby is born.

    Omphalocele is a type of abdominal wall defect. Another type of abdominal wall defect is gastroschisis, in which there’s a hole in the body wall next to the umbilical cord, and the intestine (with no layers covering it) is outside the body. Although the two conditions are both abdominal wall defects, they are very different.

Omphalocele at Seattle Children’s

We have treated many children with omphalocele at Seattle Children’s. Our surgeons have a great deal of experience with this condition. Our doctors worked on some of the surgical treatments that have greatly lowered the death rate for some types of omphalocele.

  • When it comes to your child’s health, experience matters. Our surgical teams have the skills to do it right the first time, to handle the unexpected and to care for children with the rarest conditions. More cases mean greater surgical expertise and a sharper ability to determine if surgery is even necessary. All that adds up to better outcomes.

    Children don’t react to illness, injury, pain and medicine in the same way as adults. Even the way kids react to surgery – from anesthesia to intravenous (IV) fluids – is different from adults. They need – and deserve – care designed just for them. That’s why all of our surgeons are board certified in pediatric surgery.

    Our Pediatric Surgery and Neonatology departments are national pioneers in treating children with omphalocele that is several inches across. Doctors call this condition giant omphalocele. Compared to other reports in the medical literature, we have great success in treating children with giant omphalocele.

  • Babies born with omphalocele need treatment to put their organs into their bellies. Because they need a special level of care, it’s best for these babies to be born at a hospital that has a neonatal intensive care unit (NICU). After they are born, they can be transferred to Seattle Children’s Level IV NICU, where they’ll receive the highest level of care. Seattle Children’s is the first hospital in Washington to have a Level IV NICU.

  • A diagnosis of omphalocele can be scary. We take time to explain your child’s condition and answer all your questions. We help you fully understand your treatment options and make the choice that is right for your family. Our social workers support your child and family through the challenges of this condition.

Symptoms of Omphalocele

You will not notice any symptoms of omphalocele before your baby is born – though some babies with omphaloceles have other health problems that may cause symptoms before birth.

After birth, you and your baby’s doctor will see organs from the baby’s belly sticking through the belly button area covered by the layers of the umbilical cord (the omphalocele sac). Your baby may have only a small hole and a small bulge of organs that comes through, such as a part of the intestine. Or there may be a large hole and a large bulge with several organs, like the intestine and liver, on the outside.

Your baby may not have any symptoms. When babies do have symptoms, they usually don’t come from the omphalocele itself, unless the sac is torn. Usually, the symptoms come from other problems that can happen at the same time as omphalocele.

  • About half of the babies with omphalocele have other birth defects, including problems with the:

    • Heart
    • Spine
    • Digestive tract
    • Lungs
    • Urinary tract

    Some babies with omphalocele are born with lungs that are a bit smaller than normal. One symptom of this may be rapid breathing. In some cases, babies may need to use a breathing machine (ventilator) to help their lungs.

    If your baby’s lungs are small, it may be hard for them to breathe when the organs are pushed back into their belly. The organs push up on the chest and squeeze the lungs. Your baby’s doctor will carefully examine your baby for this problem and use the information to help plan treatment.

    Some babies have chromosome abnormalities that cause a variety of other symptoms. If this is the case for your child, your baby’s doctor will talk with you about other symptoms your child might have.

Diagnosing Omphalocele

In most cases, doctors see omphalocele during a routine ultrasound exam before the baby is born. On the ultrasound they see a bulge that sticks out from the baby’s belly and holds some of the intestine or other organs. If this happens with your baby, the team at Seattle Children’s Prenatal Diagnosis and Treatment Program can work with you to get ready for the birth and plan for the treatment your baby may need.

Your doctor may talk with you about having tests before your baby is born to check for other problems with development. The doctor may suggest doing an ultrasound of your baby’s heart (fetal echocardiogram) to check its shape and how it’s working.

Once your baby is born, the doctor will see the omphalocele during a physical exam. Your baby may need tests after birth to tell if there are any other health problems.

Treating Omphalocele

Omphalocele treatment consists of 2 main options:

  • Surgery as a newborn
  • Paint and wait

Which treatment your child needs depends on the size of the bulge of organs outside the belly button.

  • If the bulge of organs is small to medium sized, surgeons may be able to treat the omphalocele right away. They push the organs through the hole and into your child’s belly. This is called reducing the organs. When the organs have been moved, the surgeon sews the hole closed.

  • If the bulge of organs is large, there may not be room inside your baby’s small body for all the organs right away. In these cases, doctors use a technique called “paint and wait.” The sac covering the omphalocele is “painted” with an antibiotic cream. Over time, your baby’s skin grows over the sac. This may take several months.

    When the baby is stable, breathing well and eating without problems, doctors wrap the sac with an elastic bandage, like the ACE bandages you can buy at a drug store. The elastic of the bandage slowly pushes the bulge back into your child’s belly.

    In most cases, babies do not need to be in the hospital for paint-and-wait treatment. Our nursing staff will teach you how to use the bandage and care for your baby. When all of the contents of the sac are pushed into your child’s belly, the surgeon will talk with you about a surgery to close the remaining hole.

    It may take 6 to 9 months for the elastic bandage to push the bulge into your child’s belly. This may seem like a long time. But paint and wait is very successful in children with large omphaloceles. It has greatly reduced the number of problems babies used to have when surgeons tried to push all the contents of a large bulge back into the belly right away.

    If your baby’s lungs are small, the paint-and-wait technique may be the best way to treat the omphalocele at first. As your baby grows, the lungs and belly get larger. This makes more room inside for organs. Breathing becomes much easier as the baby grows.

    Read how Onora’s care team decided “paint and wait” would be best and how it prepared her for a better life.

  • Your baby may need an intravenous (IV) line. This is a tube that goes into a vein to give your baby fluids. After surgery, a few babies can have breast milk or formula right away. Most babies need to get nutrition other ways until they recover from the surgery. They may be fed through a tube that goes into a large vein (PICC line or central line) or through a feeding tube that passes through the nose or mouth into the stomach (NG tube or OG tube). This continues until your baby is able to get all nutrition by mouth. We give your baby pain medicine as needed to make them comfortable.

    As your baby’s health improves, they move from the NICU to a regular hospital room, and eventually to home. The size and severity of omphalocele can vary widely. So can the length of the hospital stay. Some babies may need to be in the hospital for a week, whereas others stay for several months. At the least, your baby will need to be in the hospital:

    • Until your baby has recovered from surgery as a newborn
    • If your baby has the paint-and-wait technique, until you have learned how to care for your baby at home

    With either treatment, your baby must be able to get enough nutrition before you take them home. Your baby’s healthcare team will be able to give you a better idea how long it will be before your baby can go home.

Contact Us

If you have questions about omphalocele treatment, call our General and Thoracic Surgery Department at 206-987-2794. If you would like an appointment, ask your child’s primary care provider for a referral.

Providers, see how to refer a patient.