NONPROFIT PATIENT ADVOCACY ORGANIZATION
WHAT IS CONGENITAL DIAPHRAGMATIC HERNIA (CDH)?
Congenital Diaphragmatic Hernia is a birth defect in which a baby's diaphragm fails to fully form in the womb.
This leaves an opening for abdominal organs to migrate into the chest cavity, pushing over the baby's heart and putting pressure on the lungs, which hinders lung growth. Babies diagnosed with this are immediately intubated and taken to the neonatal intensive care unit, IF the diagnosis was made prior to birth. Sometimes this defect is not found until after birth. A few days to a week after birth, surgery is performed to repair the diaphragm using a muscle flap if necessary or a synthetic patch. ​
This defect has different statistics globally that are dependent on the environment and economy in which a baby diagnosed with this is born. There are no definite known causes. It is never the parent's fault that this occurs. Survival rates are based on the amount of experience that the hospital in which the baby is born has.
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This defect does not just affect the heart and lungs. When abdominal organs move into the chest cavity, it puts pressure on the skeleton which can cause issues such as Scoliosis and Clubfoot. Survivors often face a number of other problems that include vision loss, hearing loss, Pectus Excavatum, bowel obstruction, respiratory problems, and associated defects. Reherniation can also occur, where the patch or muscle used to repair the diaphragm no longer holds together. Thus, this defect is life-long and life-threatening. These babies have a lot stacked against them, but they are so strong!
Almost every time that a CDH baby is born, the parents had never heard of the defect before. They're thrown into a world of children's hospitals, numbers that they don't understand yet, and the terrifying uncertainty of whether their newborn will live. With growing technology, there are more survivors in more countries in recent years. However, there is still a long way to go in figuring out what causes this defect and finding a cure. ​
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​ Meanwhile, parents face up to a year in the neonatal intensive care unit at a hospital with their child if he/she survives. Parents face burial expenses in the worst-case scenario, or they face a lifetime of medical expenses to allow their child procedures and testing necessary to monitor the well-being of their survivor. These families may have multiple CDH babies born into their families since this defect can be genetic (this is not always the case).