Omphalocele

Omphalocele is a rare birth defect. It happens in about one in 5,000 births. An omphalocele happens when the bowel, liver and sometimes other organs remain outside the belly in a sac.

Since some or all of the belly organs are outside of the body, they may be injured and the belly does not grow to its normal size. The belly may be too small to hold all of the organs.

At birth, your baby’s belly will look like there is clear sac filled with liquid. You may be able to see through the sac and see the bowel or other organs. Your baby’s umbilical cord will be on top of the sac.

Some babies with omphalocele can have other problems with their heart, spine, or digestive organs. Your baby may be tested to see if he or she has any of these problems. If your baby does have any of these problems, you may be more likely to have another baby with an omphalocele.

If your baby has no other major problems, the chance for you to have another baby with an omphalocele is 1 percent (one in 100).

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Treatment for Omphalocele

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While your baby is in the delivery room the sac will be kept moist and covered with plastic to protect the bowel.

Your baby will need to be in a special unit called the Neonatal Intensive Care Unit, which takes care of sick babies after birth.

You and your baby’s surgeon will discuss the best way to repair the omphalocele based on your baby’s health.

If your baby’s omphalocele is small, surgery may be done soon after birth. The surgeon will place the bowel and other organs in the sac into the belly and close the opening.

If the omphalocele is larger, your baby’s belly will need to grow or be stretched enough before the surgery can be done. The repair would then be done in stages. If the sac ruptures before it is repaired, the baby will need to have surgery right away.

Sometimes the omphalocele can be too large to repair right away. Skin will grow to cover the sac with the help of medication, good skin care and nutrition. If this happens, your baby will then have surgery to close the belly muscles in six to 12 months when the belly is larger.

Most babies with an omphalocele will be able to go home from the hospital once they are taking all their bottles and after the family has learned the how to change the dressing and to protect the sac.

Long-Term Outlook

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Most babies with omphaloceles do well. The survival rate is over 90 percent if the baby’s only issue is an omphalocele. The survival rate for babies who have an omphalocele and serious problems with other organs is about 70 percent.

Your baby may also have some feeding difficulty, reflux, growth delays and bowel obstruction and could have long-term breathing problems. Your baby may be more prone to sickness than other babies.

Close follow-up with the doctor and care team is needed once your baby goes home.

Last Updated 01/2016