Until about ten weeks of pregnancy, it is normal for the bowel (intestines) to be outside of the baby’s belly. After 10 weeks they should be inside the belly. 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.
A small omphalocele happens in 1 out of every 5,000 live births. A large omphalocele happens in only 1 out of 10,000 live births.
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% (1 in 100).
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. While your baby is in the delivery room the sac will be kept moist and covered with plastic to protect the bowel.
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.
Sometimes the surgeons are not able to repair the omphalocele right away if it is too large. 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. 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 6-12 months when the belly is larger. If the sac ruptures before it is repaired, the baby will need to have surgery right away.
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.
Your baby may 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.
Most babies with omphaloceles do well. The survival rate is over 90% 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%.