In memory of Shane Torrence (1/28/93 - 9/11/99)
A mom on a mission raising awareness of the condition that took my only child at age 6 and a half - Congenital Diaphragmatic Hernia CDH takes the lives of 15,000 children every year and harms 15,000 more.
Will you care?

Congenital Diaphragmatic Hernia

Congenital Diaphragmatic Hernia

Congenital Diaphragmatic HerniaWhat 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 totally 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.  

Parents can help their cherubs by becoming informed and educated about Congenital Diaphragmatic Hernia so that you can make the best decisions for your child. 

We ask all CDH parents to make sure to get your information from honest, reliable sources like CHERUBS (we have a Medical Advisory team), hospitals, and members of ACDHO.   We know there are a lot of CDH groups, sites and blogs on the internet and information can be conflicting, confusing and overwhelming.     Please never take advice from another CDH parent or anyone without a medical degree - and only take medical advice from doctors who have seen your child or his / her medical records.  

Click on the links below to learn more about CDH from CHERUBSS: 

CDH Research Info - Information on research of Congenital Diaphragmatic Hernia
Anatomy of the Diaphragm - In depth description from the Children's Hospital of Philadelphia + CDH VIDEO

CDH at APSA - American Pediatric Surgical Association information on CDH

Types of CDH - Learn the difference between the types of CDH

Types of Treatments - In utero treatments, ventilation techniques and more

Types of CDH Repairs - Various ways of repairing a Congenital Diaphragmatic Hernia

Surgical Managment - Article written by our Vice-President, Dr. Lesli Taylor, in 1997

History of CDH - When it was discovered, treatments, and more

CDH Statistics - Basic information and statistics about Congenital Diaphragmatic Hernia

CDH Q&A - Frequently asked questions about CDH

Common Medical Terms - Easy-to-understand definitions of medical terms frequently used with CDH patients

CDH Research Site - CHERUBS Long-Term CDH Research Database

CDH Videos - Informational videos by various hospitals, our CDH Conferences and more

CDH Library - Links to 100's of CDH Research Articles, web sites, hospitals, charities and more

Info for Expectant Parents - More information and support for parents expecting a baby with CDH