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Thread: Looking for resources on CDH study for my baby

  1. #1

    Looking for resources on CDH study for my baby

    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.

  2. #2
    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
    Tracy - mom to Ian, LCDH diagnosed at birth, 4/3/04. Ian was born at 36 weeks, spent 53 1/2 days in NICU, 7 days on ECMO, surgery was on day 5, 29 days on a vent, 23 days was an oscillating vent, 546 days on oxygen. Inguinal right and left hernias and undescended left testicle surgeries were done on day 48. Currently has heart related medical issues and exercise induced asthma, but is one happy, happy boy!! Also mom to Cole - 13, Shane - 9, and Toby - 4. CHERUBS Parent Advisory Board Member and Co-Chair, Volunteer Co-Coordinator, and Wyoming State Representative.
    email: tmeats@cherubs-cdh.org

  3. #3
    We did the DHREAMS research study. My daughter was born at Cardinal Glennon in St. Louis, Missouri.
    Laura Henderson
    Missouri State Representative
    Mom to Lucie, LCDH survivor

  4. #4
    Welcome to Cherubs Sandra. I have spoke to Julia on the phone and she was fantastic.
    Amanda Mother of Liz born 09/09/2002 with LCDH,Emily 05/27/2005. Liz was diagnosed at 12 weeks in uetro 90 percent of left diaphragm missing. Gortex patch put in at 3 days old. Ever abdominal organ other then kidneys herniated. Born at 38 weeks, 6 lbs 11oz. Born in Hamilton ON. Hospitalized for 6 weeks. Rehirniated at age 6 and 3 surgeries age 10 almost lost my Cherub again. Duplication cysts on her stomach. Reflux and on going GI issues.

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