Congenital Diaphragmatic Hernia (CDH) is a birth defect that occurs when the diaphragm does not fully form, allowing organs to enter the chest cavity preventing lung growth. CDH strikes 1 in every 2500 babies¹, of all races, religious backgrounds, and financial status - no matter how well the prenatal care.

Nearly 4 million babies are born in the United States each year.  This means that approximately 1600 babies are born with CDH each year - in the U.S. alone!    There are more babies born with CDH than with Cystic Fibrosis (1 in 3900) and it's almost as common as Spina Bifida (7 in 10,000) ² - yet, you probably have never heard of it until it affected someone that you love.   CHERUBS is working hard to raise Congenital Diaphragmatic Hernia Awareness!³

The cause of Congenital Diaphragmatic Hernia is not yet known.

50% of babies born with CDH do not survive and sometimes the remaining 50% have to overcome very difficult medical complications. Many CDH babies have minor lasting health problems such as feeding aversions, asthma, scoliosis, or short-term oxygen dependency.  A small number have major lasting health problems such as ventilator dependency, brain damage, or hearing problems.  Many patients have no long-lasting medical problems at all other than a scar from the CDH repair.  CDH can occur alone or with other birth defects, and rarely, it occurs as part of a syndrome.

Every CDH baby is different, there is no way to predict the outcome of any patient.  Some babies with no diaphragm and little lung growth have survived, while some babies with full lungs do not.  These children are very different, requiring different treatments, and varying amounts of medical support.
 

Looking for support dealing with Congenital Diaphragmatic Hernia?   Make sure to visit CHERUBS - The Association of Congenital DIaphragmatic Hernia Research, Awareness and Support

Like the CDH logo or want to purchase some CDH Awareness items?  Make sure to visit CHERUBS Store where you can buy 100's of items with the Official Congenital Diaphragmatic Hernia Awareness Ribbon, the CDH logo, the CDH Anatomy shirt and much more.  

This web site is a project of CHERUBS - The Association of Congenital DIaphragmatic Hernia Research, Awareness and Support.   It is supported by volunteers and funding through CHERUBS, a 501(c)III Non-Profit Organization.   Donations and sponsorships are greatly encouraged and appreciated to help keep this CDH Reseach site continuing, growing and leading the search for the cause and prevention of CDH.



CHERUBS Congenital Diaphragmatic Hernia Research Survey is the combined efforts of over 2000 CDH families and medical professionals.   It takes information on the medical, family and exposure histories of CDH patients and compares data to look for the cause, prevention and better treatement of Congenital Diaphragmatic Hernia.  Participation is voluntary, anonymous and free to all CDH families and medical staff.   Data can be tabulated live for research and reference purposes.  

You can view our last survey results by clicking here.

Sneak Peak at our new database:

We've been hard, hard at work for months now on the Congenital Diaphragmatic Hernia Research Database site!!! Once completed, this site will survey all CDH parents and researchers and allow research statistics to be tabulated on the fly!

This CDH Research Study is the only long-term, in depth CDH study of it's kind in the world. It is the largest database of CDH patient, family medical history, pregnancy history and long-term care data. Together with the CDH Study Group and their database of 1000's of CDH patients immediate care and medical histories, we hope to learn information that will help all babies born with Congenital Diaphragmatic Hernia and learn how to stop CDH from happening to babies of the future. It is 100% confidential, server secure and HIPPA complient.

This is CDH research happening right NOW! CDH Research that every patient and every family can join in to help - regardless if your child is a survivor or non-survivor or whether you have DNA samples available (as many parents of non-survivors do not). Every CDH family can participate. Every CDH family can make a difference!

Below is some information tabulated from our survey that includes members who joined CHERUBS by April 30, 2009. The following data only includes primary patient information - it does not include secondary memberships (grandparents, additional parents, etc) or CDH researchers memberships.

This data includes 2431 CDH patients (those who joined before February, 2009). It does not include all other non-patient or secondary members.

CDH Patients In CHERUBS Membership By State:
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CDH Patients In CHERUBS Membership By Country:
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Want to talk to other CDH families in your state or country? Please contact your State or International Representative or visit our CDH Forums.


BASIC STATISTICS
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CHERUBS Membership Survival Rates 1985 - 2008

This data did not include patients not yet born, those patients who did not include their birth dates and those who joined while expecting but whose data hasn’t been updated since birth. This does not show the CDH survival rate – it does show that Survivors and Parents of Survivors are consistently joining CHERUBS 2 to 1 over Grieving Parents.

SIDE AND TYPE OF CDH

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CDH Repairs

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CHERUBS has been tabulating CDH Research Studies since 1997. Now, with the help of 1000's of CDH families and researchers around the world and with the other organizations of ACDHO, we are so, so proud to announce that our years of hard work will be able to benefit the CDH community even more.

This site will be FREE for ALL to use. CHERUBS does not wish to be paid for it's use or to "own" or trademark Congenital Diaphragmatic Hernia Research. You do not have to be a member of CHERUBS to participate. ALL CDH families, organizations, researchers and the general public will be allowed to access and use this information and research. All we care about and want is finding the cause, prevention and best treatment of CDH.

This is only just a teeny tiny bit of what this CDH Research Study will include. There will be 4 separate studies:

1. CDH Patient Information - created from CHERUBS membership form data. This is our basic patient information, some of which is shown above. Pregnancy history, CDH diagnosis, side of CDH, type of CDH, hospital stay, CDH repairs, other birth defects, complications, etc.

2. In Depth CDH Research Survey - 12 very detailed pages of maternal exposures during pregnancy, pregnancy histories, family medical histories, chemical exposures, birth defects, genetic issues, lung capacity, long-term therapies, pregnancy testing, labor and delivery, CDH repairs, complications and much, much more.

3. CDH Support Survey - survey on how CHERUBS can better help CDH families and what other services are needed

4. CDH Researchers Survey - taken from CHERUBS membership forms for medical professionals, this helps doctors and nurses to better help CDH patients and their families.

We are very, very excited about this project and look forward to unveiling it soon!

Want to read more about the type of data we're researching? You can view our past CDH Research Survey Results below:

1997 CDH Research Survey Results - http://cdhsupport.org/cdhsurveyresults-1997.pdf

1998 CDH Research Survey Results - http://cdhsupport.org/cdhsurveyresults-1998.pdf

1999 CDH Research Survey Results - http://cdhsupport.org/cdhsurveyresults-1999.pdf

2000 CDH Research Survey Results - http://cdhsupport.org/cdhsurveyresults-2000.pdf