What is Congenital Diaphragmatic Hernia (CDH)?

Congenital diaphragmatic hernia (CDH) occurs when the diaphragm does not develop at all, develops partially or develops a hole in it. This allows digestive organs into the chest cavity and restricts lung growth in the unborn child. Most children are diagnosed with CDH receive the diagnosis at the standard 20 week anatomy ultrasound.

The Sensigreen CDH Foundation visited Dr. Kays in June of 2018. This video produced by Johns Hopkins All Children's Hospital is a fantastic two minute summary of all we learned. The Kays team at JHACH is amazing and we highly recommend this video to all CDH parents, families and friends.

What is ECMO?

Our friends at Tiny Hero have great information on the basics of Extracorporeal Membrane Oxygenation (ECMO). Please visit their page to learn more about how they support CDH families and learn more about ECMO. 

What is ECMO »

Infographic used with the permission of CDH UK.

Infographic used with the permission of CDH UK.

CDH Facts:

  • CDH occurs in 1 in 2500 births.

  • CDH has a similar prevalence to spina bifida and cystic fibrosis, but few people know of CDH unless a loved one had received a CDH diagnosis.

  • There are multiple factors that can potentially cause CDH including genetics.

  • At this time there is no know preventive therapy for CDH.

  • Excellent medical care immediately following birth is the only hope a child born with CDH has.

  • NICU stays for children born with CDH vary in length. Most range from 1-3 months.

  • Many families travel far from home to find the best care for their child who is born with CDH.

  • Currently 50% of Children born with CDH do not live to their 1st birthday.