Congenital Diaphragmatic Hernia Explained

Christian Benge was born with Congenital Diaphragmatic Hernia (CDH), a life-threatening condition that impairs lung growth and function. Unbeknownst to her or her parents, the active 16-year-old girl developed pulmonary hypertension as a result of CDH. Tragically, her heart gave out trying to support her diminished lungs while touring a haunted house attraction with her family and friends.

CDH is characterized by a malformation of the diaphragm, which prevents closure and allows abdominal organs to protrude into the chest cavity. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. The exact cause of CDH remains unknown.

CDH occurs in approximately 1 in every 2,500 births in the U.S., accounting for 1,600 cases each year. Surgical intervention is required to correct the condition. Despite doctors' best efforts, however, 50 percent of babies with CDH die shortly after birth. The half that do survive usually require an extensive stay in neonatal units.

Complications from CDH vary, depending on the severity. Common problems triggered by CDH include feeding issues, respiratory and gastrointestinal disorders, skeletal abnormalities and other developmental delays; however, most CDH survivors are able to live a relatively normal life after the first few years.

CDH occurs as frequently as spina bifida and cystic fibrosis, yet there is very little research being conducted to determine its cause.

To learn more about CDH and how you can help support families affected by the condition, click here.