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Omphalocele

What is omphalocele?

Omphalocele (pronounced um-FAL-uh-seel) is a hole in the muscles and skin at the belly button (called the umbilical ring).

As a baby grows inside the mother’s womb, some of the baby’s organs start to develop outside of the baby’s belly. Later in development, these organs are supposed to move inside the baby’s belly. In omphalocele, they do not move inside the belly. Instead, there’s a hernia, or abnormal hole, through the baby’s umbilical cord. The organs stay outside the baby’s belly, and the umbilical cord forms a sac around them. (This is different from gastroschisis, in which there’s hernia next to the umbilical cord.)

There may be only a small bulge of organs, such as a part of the intestines, on the outside. Or there may be a large bulge with several organs, like the intestines and liver.

Who gets omphalocele?

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

What are the symptoms?

Before your baby is born, you would not notice any symptoms related to your baby’s condition. After birth, your baby may or may not have symptoms. When babies do have symptoms, they usually don’t come from the omphalocele itself unless the sac is torn. Usually they come from other problems that may be associated with omphalocele.

About half of babies with omphalocele have other birth defects, such as problems with their heart, spine, digestive tract, lungs, and urinary tract. Some babies have chromosome abnormalities. If this is true for your child, then they may have other symptoms. Your doctor will talk with you about any other problems your child might have.

How do you diagnose omphalocele?

In most cases, doctors see omphalocele during a routine ultrasound before the baby is born. If this happens for you, then doctors can work with you before your baby is born to plan the treatment needed after birth. Your doctor may talk with you about having genetic 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.

What is your experience with omphalocele at Children's?

We have treated many children with omphalocele at Children’s. Our surgeons have a great deal of experience with this condition. We have pioneered some of the surgical treatments that have significantly lowered the mortality rate in some types of omphalocele.

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 for our patients and families.

How do you treat omphalocele?

Babies with omphalocele need their organs placed back into their abdomen 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 Children’s NICU for care after surgery.

Reducing the organs

When your baby is born, doctors will check the size of the omphalocele. If the bulge of organs is small to medium, surgeons may be able to return the organs to the abdomen right away by pushing them through the hole. This is called reducing the organs. Then the surgeon will close the hole with stitches.

“Paint and wait”

If the bulge 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, skin will grow over the sac. This may take several months. When the baby is stable, breathing well and feeding without problems, the sac is wrapped with an ACE bandage, like the kind that you can buy in the drug store. The elastic of the ACE bandage slowly pushes the contents of the sac back into the abdomen.

In many cases, this type of treatment can be done on an outpatient basis, so the baby does not need to be in the hospital. Your doctor will discuss this with you, and our nursing staff will help prepare you to be involved with your baby’s care and teach you how to use the bandage. When your baby has all the contents of the sac pushed back into the belly, your surgeon will talk with you about doing surgery to close the remaining hole.

It may take six to nine months for the ACE bandage to push all of the contents of the sac back into the abdomen. While this may seem like a long time, it is a very successful way to care for children with a large omphalocele. The technique has sharply reduced the complications these babies often had when surgeons tried to push all the contents of a large sac back into the belly right away.

Breathing issues

Some babies with omphalocele are born with lungs a bit smaller than normal. Some may show this by breathing faster than normal. Others need to be on a breathing machine (ventilator) to help their lungs. Sometimes when the organs are pushed back into the abdomen, it gets harder for the baby to breathe because the abdomen is so full that it pushes up on the chest and squeezes the lungs. Your surgeon will look for these possible problems when your baby is born and use some of this information to help determine the best means of caring for your baby.

If there is concern that 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 larger, their lungs and abdomen will also get larger, so there will be more room inside and breathing should no longer be a problem.

Other measures

Your baby may also need an IV (short for intravenous) line, a tube that goes into a vein to give fluids. After surgery, your baby can take breast milk or formula as soon as they are able. A few babies will be able to do this right away. Others will need nutrition through a tube that goes into a large vein (either a PICC line or a central line) or through a feeding tube (a tube that passes through the nose or mouth into the stomach, called a nasogastric tube, NG tube, or orogastric tube, OG tube). This will continue until your baby is able to take all nutrition by mouth. We will give your baby pain medicine as needed to make them comfortable.

As your baby’s health improves, they will be able to 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 only a week while others may need to be in the hospital for several months. Your baby will need to be in the hospital at least:

  • Until all the organs are moved back into the abdomen, and the hole is closed, or
  • If the “paint and wait” technique is used, you have learned what you need to do to care for your baby at home.

With either method, your baby also has to be able to take adequate nutrition to be able to go home. After your baby is born and we can check their health more thoroughly, your baby’s health-care team will be able to give you a better idea of the likely time frame.

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.