You just heard that your child has been diagnosed with CDH.  There is nothing you did, did not do or could have done or not done to have prevented your child from having congenital diaphragmatic hernia. CDH is considered a multifactorial condition, simply meaning they don’t know what causes it but they believe it is caused by many factors together. The diaphragm is formed in the first trimester of development and we don’t know what exactly goes wrong.  There are a few genetic studies in the United States which are looking at genes and the possible connection.

Identifying Genes Which Cause CDH
Massachusetts General Hospital
Massachusetts General Hospital & Boston Children’s Hospital
Anna Frangulov (Study Coordinator)
Phone: 617-355-2555
Email:  CDHResearchStudy@childrens.harvard.edu
Dr. Barbara Pober (Study Geneticist)
Phone: 617-355-8780
Email: barbara.pober@childrens.harvard.edu

 

DHREAMS – Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science
Columbia University Medical Center
1150 St. Nicholas Avenue
New York, NY 10032
Phone: (212) 305-6987
Study Coordinators:
Julia Wynn, MS, Principal Study Coordinator
jw2500@columbia.edu
Gudrun Aspelund, MD
Department of Paediatric Surgery
ga2221@columbia.edu
Wendy Chung, MD, PhD
Principal Investigator Director of Clinical Genetics
wkc15@columbia.edu

Baylor College of Medicine
Daryl A. Scott, MD/PhD
Mail Stop: BCM 227
One Baylor Plaza
Houston, TX 77030
E-mail: dscott@bcm.tmc.edu

There is also the Congenital Diaphragmatic Hernia Study Group which is compiling Medical Information from many hospitals into a database: http://cdhsg.net/

Birth Defects Research for Children Inc. has a survey to complete which is compiling information on Birth Defects and exposures that may have been the cause, including environmental, military service or work related exposures.

Please contact these studies above to participate.  This is one thing you can do when your child has been diagnosed with CDH which could lead to answers of how it occurs.  Most can send the information to you and if samples are needed have them taken at a local medical center at no cost to you. The more who participate, the more data collected. With more data this could lead to answers for higher survival rates.

CDH is random, it does not distinguish race, religion, ethnic or economic backgrounds. There have been Egyptian Mummies found with congenital diaphragmatic hernias. General Stonewall Jackson is speculated to have suffered from a diaphragmatic hernia, however this is not conclusive. There have been people who never knew they had a diaphragmatic hernia and by chance and x-ray reveals that they have one but an organ blocked others from causing more damage or the symptoms they experienced were treated and no one investigated further.

Even having a diaphragmatic hernia caused by an accident, is dangerous – so a baby born with a congenital diaphragmatic hernia faces great challenges in order to survive.

The most important thing parents and others should know is they did nothing to cause CDH. Nothing today can predict that your offspring would have CDH. Even if a child with CDH was born in your family, the odds of having another child with CDH are just as if you never had a child with CDH – a 2% chance.

If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell. – Lance Armstrong

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