What is Congenital Diaphragmatic Hernia (CDH)? An ERNICA animation for parents and families

This animation aims to provide you with more information about congenital diaphragmatic hernia or CDH. When you breathe, you use a muscle called the diaphragm. The diaphragm is a muscle separating the chest from the abdomen. Sometimes a baby's diaphragm does not form properly during pregnancy. This can mean the baby has an opening in their diaphragm. It is most common for this opening to be on the left side of the diaphragm, but it can be on the right side or both. Contents of the abdomen, such as the stomach, intestine, and or liver, can go through the opening into the chest. This is called congenital diaphragmatic hernia, or CDH and it is classed as a rare birth defect. CDH can sometimes happen alongside other malformations. However, in most cases it is sporadic. The cause of CDH is largely unknown, but it has been associated with other rare genetic diseases. The presence of abdominal contents in the chest impacts the growth and development of your baby's lungs, normally leading to small lungs, known as hypoplasia, and poor lung function. It can also affect the heart by pushing it out of its normal position and competing for space. A diagnosis of CDH can be made before birth using ultrasound and MRI, which are both ways of obtaining images of your baby in the womb. 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 CDH. Some unborn babies may be suitable for surgical intervention before birth to support lung development. This is called fetal therapy. CDH is a serious condition and can be life threatening for your baby before and after birth. However, many babies do survive. After birth, your baby will receive immediate care and assessment. And then will be transferred to a dedicated intensive care unit. They will require assistance with breathing and feeding and other intensive care support. When your baby is stable, surgery can take place to close the opening in the diaphragm. The amount of time your baby will spend in hospital will differ, depending on the severity of the CDH, any 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 difficulties. Identifying any complications or difficulties early is very important. Care support can be accessed through patient and family support groups.