What is Omphalocele? An ERNICA animation for parents and families

This animation aims to provide you with more information about omphalocele. Sometimes the front of a baby's belly does not form properly during early pregnancy. This can mean the baby has an opening in their belly button. The baby's organs in the belly pass through this opening and are covered by a thin sack. This is called omphalocele, and it is classed as a rare birth defect. Sometimes only a portion of the small intestine passes through this opening. In other cases, more organs in the belly pass through, including some or most of the liver. This is called large or giant omphalocele. The cause of Ohilocele is unknown. However, onhilocele can be a feature of many genetic syndromes, and many babies with Onhilocele have other birth defects. A diagnosis of Ohilocele can be made before birth using ultrasound, which is a way of obtaining images of your baby in the womb. Prenatal tests should be carried out to identify any associated anomalies. Your baby's ongoing care should be provided at a specialist center by a dedicated team of professionals who have knowledge and experience of looking after babies with Ohilocele. Onhilocele is a serious condition and can be life threatening for your baby before birth and as a newborn. However, most babies do survive. After birth, your baby will receive immediate care and assessment. Some babies may be transferred to a dedicated intensive care unit, if they have a giant omphalocele. The contents of the belly that have been passed through the opening are wrapped in a sterile bag to avoid damage. When your baby is stable, surgery can be performed to place the organs back where they should be in the belly and close the opening. Small omhiloces can be repaired in one operation, which is called a primary repair. For babies with a giant omhilocele, this will be 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 it. In these cases, surgery may be postponed for some weeks or months, or for as long as necessary to allow the lungs and body to grow first. Babies may be able to return home during this period with appropriate nursing care in place. The amount of time your baby will spend in hospital will differ, depending on the severity of the omphalocele, any associated anomalies or complications, and how well they respond to treatment. Follow up care by a team of different clinical specialists is required. This team is often called a multidisciplinary team, or MDT. 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.