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 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.

1 in 2500 babies is diagnosed with CDH

Over 1600 babies are born with Congenital Diaphragmatic Hernia EVERY YEAR in the United States alone.

With a 50% survival rate, 800 of those babies will die.

Today, and every day, at least 4 families will be devastated with the news of CDH.

More CDH Statistics

   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.

 
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2017 - News from CHERUBS

Finish up the CDH Survey - Get a FREE Hat!

The CDH Research Survey went live on April 1st but in order to take full advantage of all research opportunities, we need ALL families to fill out the complete CDH Research Survey.  

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Have you registered for the 2017 CDH Conference in July in SLC?

Make sure to register to attend the largest annual CDH event and the first conference in the midwest in several years!

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Carshow Carnival on June 24th in Lewiston, Idaho

Join us on June 24th at Locomotive Park for a fun car show put on by Girl Scout Troop 2601

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