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Thread: 2013 International Congenital Diaphragmatic Hernia Conference - Boston, MA

  1. 03-12-2013, 02:14 PM #1
    Chris and TracyMeats
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    2013 International Congenital Diaphragmatic Hernia Conference - Boston, MA

    Join us in Boston, Massachusetts for the first ever joint Medical and Family conference for CDH!

    Hosted by CHERUBS, Massachusetts General CDH Study Lab and Boston Children's / Harvard University.

    The Inn at Longwood Medical
    342 Longwood Avenue
    Boston, MA 02115

    July 9th through July 13th, 2013

    Our conferences are designed for families of CDH survivors, grieving CDH families, adult survivors and CDH researchers!

    Since our first conference in 2000, CHERUBS is proud to work with the world's best CDH hospitals and researchers to bring the families and the medical world together and over the years have bought together 9 CDH groups and families from 8 countries!

    Please go here to register, http://2013cdhconference.eventbrite.com/#
    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. 03-13-2013, 12:08 PM #2
    freedom
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    Sounds like it's going to be one you don't want to miss. The Green's are still trying to figure out how to get our family of 6 to this wonderful event. Have a great time everyone.
    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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