WHAT IS CDH?
Congenital Diaphragmatic Hernia (CDH) occurs in approximately 1 in every 2,500 births (1,600 cases in the U.S. each year). The cause of CDH is not yet known. The diaphragm is formed in the first trimester of pregnancy and controls the lungs' ability to inhale and exhale. CDH occurs when the diaphragm fails to form or to close completely and an opening allows abdominal organs into the chest cavity. This inhibits lung growth.
Every patient diagnosed with CDH is different. Survival rates depend on the types and number of organs involved in the herniation and the amount of lung tissue available. There are many surgical procedures and complications that may or may not occur with each individual, including in utero surgery.
Roughly 50% of babies born with CDH do not survive. Of the 50% that do survive, most will endure long hospital stays, feeding issues, asthma and other problems. A few of the survivors suffer from severe long-term medical issues.
CDH occurs as frequently as Spina Bifida and Cystic Fibrosis, yet there is very little research being done and virtually no media coverage.
Every baby with CDH is different - like a snowflake, no two are alike. What works for one baby, may not work for another. There is no reliable indicator to predict if a baby will do well or not. Babies with no diaphragm and little lung sometimes do well, while babies with 2 full lungs can sometimes do poorly. Head to lung ratio is used to determine whether to intervene prenatally through in utero treatments but it does not indicate a true survival rate. "Lung function" is also not an indicator as there are many other factors at work with these children such as kidney function, brain function, other birth defects, possible complications or infections while in the hospital, etc.