What is Omphalocele? An ERNICA animation for parents and families
Educational content from recorded physician discussions — not medical advice. Talk to your (or your child's) care team about your situation.
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What the experts said
The front of a baby's belly does not form properly during early pregnancy in omphalocele
In omphalocele, the baby has an opening in their belly button through which organs pass and are covered by a thin sac
Omphalocele is classed as a rare birth defect
Sometimes only a portion of the small intestine passes through the opening in omphalocele
In other cases, more organs including some or most of the liver pass through the opening
When the liver is involved, it is called large or giant omphalocele
The cause of omphalocele is unknown
Omphalocele can be a feature of many genetic syndromes
Many babies with omphalocele have other birth defects
A diagnosis of omphalocele can be made before birth using ultrasound
Prenatal tests should be carried out to identify any associated anomalies in omphalocele
Ongoing care for babies with omphalocele should be provided at a specialist center by a dedicated team with knowledge and experience
Omphalocele is a serious condition and can be life threatening for the baby before birth and as a newborn
Most babies with omphalocele do survive
Some babies with giant omphalocele may be transferred to a dedicated intensive care unit after birth
The contents of the belly that have passed through the opening are wrapped in a sterile bag to avoid damage
When the baby is stable, surgery can be performed to place the organs back in the belly and close the opening
Small omphaloceles can be repaired in one operation called a primary repair
For babies with giant omphalocele, repair is done in several steps called a staged repair
In some giant omphalocele cases, there may not be enough room in the newborn baby's belly for the organs to fit back inside
When there is insufficient abdominal domain, surgery may be postponed for weeks or months to allow the lungs and body to grow
Babies may be able to return home during the period of delayed surgery with appropriate nursing care in place
Hospital stay duration differs depending on the severity of the omphalocele, any associated anomalies or complications, and response to treatment
Follow up care by a multidisciplinary team (MDT) of different clinical specialists is required
Some babies may experience ongoing difficulties that require different types and levels of care, such as feeding or breathing difficulties
Identifying any complications or difficulties early is very important
Babies with giant omphaloceles need to be monitored more closely
Peer support can be accessed through patient and family support groups