My baby is due in October, we will be delivering at Lutheran General, IL. Looking for help to have my baby researched or genetic testing.
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My baby is due in October, we will be delivering at Lutheran General, IL. Looking for help to have my baby researched or genetic testing.
Welcome to CHERUBS Sandra, happy to see you are posting. We are here for you. Has the hospital referred you to a genetic counselor yet? They can do some tests before the baby is here. Did you have an amnio done yet? I am going to list the 3 big genetic research trials going on for CDH below. Participation in these are free and I am not sure if they would want samples after the baby is here or before. These studies are looking for answers to why CDH happens. I have not yet met Julia, but I have met researchers from Mass General and Baylor and they are great and friendly. Julia, I have heard amazing things about. Definitely give them a call and see what they have to say.
DRHEAMS Study
Genetic Molecular Basis of CDH
Columbia University Medical Center
1150 St. Nicholas Avenue
New York, NY 10032
ph: (212) 305-6987 (Julia Wynn)
info@cdhgenetics.com
http://www.cdhgenetics.com/
Identifying Genes Which Cause CDH
Massachusetts General Hospital
Boston, Massachusetts
Drs. Patricia Donahoe and Lewis Holmes
Contact: Meaghan Russell, Clinical Coordinator
(617)726-0828
mrussell@partners.org
http://www.massgeneral.org/research/...b.aspx?id=1486
Jessica Kim, BS
Children's Hospital, Boston
617-355-2555
JessicaKim2@childrens.harvard.edu
Identifying Genes Which Cause CDH
Baylor College of Medicine
Daryl Scott, M.D., Ph.D.
Department of Molecular and Human Genetics
Baylor College of Medicine
One Baylor Plaza, MS BCM225
Houston, TX, 77030
713-203-7242
dp1@bcm.edu
dscott@bcm.edu
http://www.bcm.edu/genetics/?pmid=11041
https://www.facebook.com/darylscottlab
We did the DHREAMS research study. My daughter was born at Cardinal Glennon in St. Louis, Missouri.
Welcome to Cherubs Sandra. I have spoke to Julia on the phone and she was fantastic.