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Thread: New ACDHO - The Alliance of Congenital Diaphragmatic Hernia Organizations

  1. 07-10-2013, 09:12 PM #1
    Chris and TracyMeats
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    New ACDHO - The Alliance of Congenital Diaphragmatic Hernia Organizations

    BREAKING NEWS: CHERUBS is proud to announce that our charity is part of the new ACDHO - The Alliance of Congenital Diaphragmatic Hernia Organizations!!!

    CDHO is an International group of professional charity and research organizations working together to better serve babies and families affected by Congenital Diaphragmatic Hernia.

    2013 ACDHO Member Organizations & Research* Groups:

    Baylor College of Medicine CDH Genetic Study*
    CHERUBS - The Association of Congenital Diaphragmatic Hernia Research, Awareness and Support
    Chloe Tate Foundation (United Kingdom)
    Congenital Diaphragmatic Hernia Study Group*
    Denmark CHERUBS
    DHREAMS Research Study*
    Hernie Diaphragmatique - groupe de soutien (France)
    Incredible Teddy Foundation
    Mass General Congenital Diaphragmatic Hernia Genetic Research Study*
    Max Richard Thornsbury Foundation
    Olivia Faith Foundation
    Olivia Raine Foundation
    Peyton's Promise
    UK CHERUBS (United Kingdom)

    Learn more at http://www.acdho.org/
    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
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  2. 07-12-2013, 03:05 PM #2
    freedom
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    So wonderful!
    Mom to Kylee Freedom Green. 10/04/00 - 10/05/00. 3lbs 14 ozs. Born at 35 weeks via emergency cesarean due to massive polyhydramnios that was restricting Kylee’s growth. She had LSCDH Her stomach, chest, and small portions of her liver, had breached into the upper-chest. Kylee had other congenital anomalies including: multiple heart-defects, two-vessel cord, Trisomy-18, as well as an AV canal defect. After much research, we chose to deliver at St. Luke’s Episcopal Hospital in Houston, TX . As soon as they delivered her she was immediately transferred to the NICU/Neo-Natal team right at the adjoining Texas Children’s Hospital. Also mom to Trey ( 9 ), Skyla ( , Chloe ( 6 ) & Elodie ( 3 )
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  3. 07-12-2013, 10:35 PM #3
    ShellyMoore
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    Great next step forward for our community!!

    Shelly Moore
    Shelly Moore
    CHERUBS Oregon Representative and Oregon Hospital Angel
    CHERUBS Prayer Committee Member
    CHERUBS Parental Advisory Board Member (2013-2015)
    Email: oregon@cherubs-cdh.org
    Facebook: http://www.facebook.com/Teckiemom

    Grandmother to cherub angel Jayden, the only son to my born to youngest daughter, Alicia.

    Jayden was diagnosed with CDH at his 17 week ultrasound with severe LCDH, stomach, intestines up as well as having polycystic kidneys. He was born February 19, 2010 at 36 weeks gestation.

    Jayden spent 7 days on ECMO after which he was working on gaining strength for surgery when his polycystic kidneys started failing at about day 15, totally failing by day 19.

    Jayden spent 4 days on dialysis before gaining his wings on March 14, 2010 at age 23 days.

    Remembering Jayden - A Family's Journey in Coping with Loss to CDH
    http://rememberingjayden.blogspot.com/

    Jayden's CDH Story 2/19/10 - 3/14/10
    http://www.youtube.com/watch?v=0fKsAsMS_ZA
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  4. 07-13-2013, 06:47 PM #4
    PatriciaH
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    This is awesome news!
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