A Devastating Birth Defect

Congenital Diaphragmatic Hernia (CDH) is a rare birth defect that effects roughly 1 in every 2,500 live births per year worldwide with an estimated 1,600 new cases in the United States annually. 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. The cause of CDH is still completely unknown.

The onset of CDH occurs somewhere between 8-12 weeks gestational age when the baby’s diaphragm is forming, in theory separating the chest cavity from the abdomen. Unfortunately with CDH babies, a hole remains in the diaphragm allowing the contents of the abdomen (stomach, intestine, liver, spleen, and kidneys) to go up into the fetal chest. The herniation of these abdominal organs into the chest occupies that space and prevents the lungs from growing to normal size. The growth of both lungs can be affected creating a host of potentially fatal issues upon delivery.

Although it’s statistically as common as other serious but more well-known defects like Cystic Fibrosis and Spina Bifida, CDH doesn’t receive nearly the amount of financial contribution or media attention to support ongoing clinical research and family support. 

So What Happens Next?

The Fore Hadley Foundation has worked very closely with several clinical leaders from around the country to publish the document below that will hopefully you provide some very honest and transparent information on options for you and your child upon receiving a CDH diagnosis. This is not an all-encompassing publication but should give you a solid baseline understanding and serve to instill confidence and hope that you are not alone in this journey. Please download and share as much as needed with family and friends, the more they know and understand the better equipped they’ll be to help you during this journey.

If you'd like learn more about Congenital Diaphragmatic Hernia or are in need of information regarding treatment options we recommend one of the following organizations:

Additional CDH Resources

Tiny Hero: A Real Hope for CDH

We know this can be an extremely confusing time and there are likely more questions than answers. In addition to the families in Our Stories who have offered to always take a call or email, we've partnered with Tiny Hero, another non-profit organization focused on providing support and education materials for families dealing with a Congenital Diaphragmatic Hernia diagnosis. 

They have compiled an outstanding list of questions that you should be asking your doctor, and would also be willing to take a call regarding their personal experience with their CDH survivor, Adam.

Click the picture to learn more or visit here to download the questionnaire.