You Just Heard Your Child has 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
Massachutes General Hospital
Boston, Massachutes
Drs. Patricia Donahue and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator at (617) 726-0828 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it http://www.massgeneral.org/children/research/pedisurglab/cdh/default.aspx
Baylor College of Medicine
Daryl A. Scott, MD/PhD
R813, One Baylor PlazaMail Stop: BCM 225
Houston, TX 77030
E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
http://www.bcm.edu/genetics/?pmid=11041
DHREAMS: Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science
This study is also doing follow-up research with diaphragmatic hernia survivors throughout the United States.
Columbia University Medical Center
1150 St. Nicholas Avenue
New York, NY 10032
ph: (212) 305-6987
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
http://www.cdhgenetics.com/
Contact Julia Wynn, research coordinator, at 212-305-6987 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it to learn more about the study or find out how to enroll.
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. http://www.birthdefects.org/
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. It is random and 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 1/2,200.
We need your help. I need your help. We need money for research. It may not save my life. It may save my children's life. It may save someone you love. And it's very important. - Jim Valvano
Identifying Genes Which Cause CDH
Massachutes General Hospital
Boston, Massachutes
Drs. Patricia Donahue and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator at (617) 726-0828 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it http://www.massgeneral.org/children/research/pedisurglab/cdh/default.aspx
Baylor College of Medicine
Daryl A. Scott, MD/PhD
R813, One Baylor PlazaMail Stop: BCM 225
Houston, TX 77030
E-mail: This e-mail address is being protected from spambots. You need JavaScript enabled to view it
http://www.bcm.edu/genetics/?pmid=11041
DHREAMS: Diaphragmatic Hernia Research & Exploration; Advancing Molecular Science
This study is also doing follow-up research with diaphragmatic hernia survivors throughout the United States.
Columbia University Medical Center
1150 St. Nicholas Avenue
New York, NY 10032
ph: (212) 305-6987
This e-mail address is being protected from spambots. You need JavaScript enabled to view it
http://www.cdhgenetics.com/
Contact Julia Wynn, research coordinator, at 212-305-6987 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it to learn more about the study or find out how to enroll.
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. http://www.birthdefects.org/
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. It is random and 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 1/2,200.
We need your help. I need your help. We need money for research. It may not save my life. It may save my children's life. It may save someone you love. And it's very important. - Jim Valvano