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EUPSA/ERNICA
What is Omphalocele? An ERNICA animation for parents and families
Chapter 1 of 4 · Fundamentals
Omphalocele definition
Definition and Pathophysiology of Omphalocele
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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
Omphalocele occurs when the front of a baby's belly does not form properly during early pregnancy, resulting in an opening at the belly button.
In omphalocele, the baby's abdominal organs pass through the umbilical opening and are covered by a thin sac.
Omphalocele is classed as a rare birth defect.
In some cases of omphalocele, only a portion of the small intestine passes through the opening.
In other cases, more organs including some or most of the liver pass through the opening; this 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 babies with omphalocele.
Ongoing care for babies with omphalocele should be provided at a specialist center by a dedicated team of professionals with knowledge and experience of the condition.
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.
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 the abdominal cavity is inadequate, surgery may be postponed for weeks or months to allow the lungs and body to grow first.
Babies with giant omphalocele may be able to return home during the period of delayed surgery with appropriate nursing care in place.
The amount of time a baby with omphalocele spends in hospital differs depending on the severity of the omphalocele, any associated anomalies or complications, and how well they respond to treatment.
Follow-up care by a multidisciplinary team (MDT) of different clinical specialists is required for babies with omphalocele.
Some babies with omphalocele may experience ongoing difficulties such as feeding or breathing difficulties that require different types and levels of care.
Identifying any complications or difficulties early is very important in babies with omphalocele.
Babies with giant omphaloceles need to be monitored more closely.
Peer support can be accessed through patient and family support groups for families of babies with omphalocele.