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Omphalocele is a major birth defect that requires treatment at a specialized neonatal center with the available resources to provide all areas of needed care.
Omphalocele is a birth defect where there is a hole in your baby’s abdominal wall, directly below the umbilical cord. With this defect your baby’s bowel, liver and other abdominal organs may protrude out of this hole.
As your baby develops, their abdomen remains small and may not have enough room to put the organs back in immediately after birth. Most babies with omphalocele have a protective layer covering the organs, helping to protect them from damage. In rare cases, this layer ruptures before birth and your baby’s care becomes much more complex.
Omphalocele is often diagnosed through a prenatal ultrasound and will need additional studies before your baby is born to plan for the complex care that will be needed. Sometimes this defect is due to an abnormality in your baby's DNA and other problems may be associated with it.
One out of every four babies will also have a heart defect. At Riley at IU Health, you will receive a prenatal echocardiogram to determine if a heart defect is present. Kidney abnormalities may also be seen. Depending on which organs are protruding, a fetal MRI may be needed and your delivery plan may be affected.
After diagnosis, you will meet with all specialties at Riley at IU Health that are needed for your baby's care. This meeting will include:
This care team will discuss with you the monitoring needed during your pregnancy, delivery plan and the care of your baby after delivery. Depending on other tests, additional specialists such as pediatric cardiologists (heart doctor) or nephrologists (kidney doctor) may be part of your baby’s care team.
At the time of delivery, the neonatologist will make sure the transition to breathing and vital signs are safe and your baby will be placed in a sterile bag up to the chest to cover the organs and protect them from infection and injury.
Your baby’s pediatric surgeon will assess him or her and decide the best way to repair the defect. In cases where only some of the intestine is out, the hole may be completely closed soon after birth. In cases where the liver is out, there are several ways to gradually return the organs to the abdomen and close the hole over a period of weeks to months. This can only be determined after the baby is born.
The length of stay depends on the number of organs which are outside the body and any additional abnormalities which may require treatment.