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Thread: Great new CDH Educational Videos

  1. #1

    Great new CDH Educational Videos

    Courtesy of UCSF and New York Presbyterian

    http://www.youtube.com/view_play_lis...74E9C6089E221E
    Mom of Shane (1/28/93-9/11/99) LCDH x6 and multiple complications and birth defects.

    Founder and President of CDH International.

    Executive Director of:

    CDH International USA
    CDH International UK
    CDH International Canada
    CDH International Switzerland
    CDH International Netherlands
    CDH International Singapore
    CDH International Hong Kong

    Messages may be answered by CDHi Team.

  2. #2
    That kinda scared me. no one has ever told us that Baer probably has another defect since he has CDH. Wonder if he has one that we do not know about? I know lots of our kiddies have other defects, does anyone's cherub NOT have any other defects? He also called it a disease at first, but i thought it is just a birth defect and not a disease, A disease has to be cured but a birht defect has to be corrected.
    cdh found at birth. 28 days NICU. Vent 7 days. Repair at 3 days. No ECMO. NG Tube 28 days http://i319.photobucket.com/albums/m...don/0004-1.jpg

  3. #3
    Very good videos...thanks for sharing the links with us.
    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

  4. #4
    Thanks for sharing. It was interesting to see how Dr. Harrison's procedure has changed over the years.

  5. #5
    Thanks for sharing that Dawn! That was really interesting!

  6. #6
    Very interesting.
    Stephanie (Shelby's Mom LCDH 7-10-06)- ECMO 7 days- 2 DH repairs- hital hernia repair- Cliff Lip repair- Nissen and Mickey button. Shelby is eating and drinking by mouth now!!! THIS IS FANTASTIC!!!!! Mom to Lexi 8- Morgan 6 and Taylor 5. Blessed to have our little butterfly and our beautiful girls. [url]www.youtube.com/cdhsupport[/url] - Shelby's Journey [img]http://i258.photobucket.com/albums/hh257/gracebutterfly/CDHAwarenessRibbonShelbysmall.jpg[/img]

  7. #7
    Wow, this took me back to when I was pregnant with Kiyari. Never had heard about CDH, and the Doctors weren't giving us to much info about it. So I went online, and one of the first videos I saw was of the outcomes. I had been told Kiyari's CDH was severe, so you can imagine how I felt. I was so scared and worried, I basically cried, got really depressed and never looked up anything else.
    I regret that, because I should've looked for support groups.
    Melissa- mother of Kiyari Juliet born 7/06/2008- LCDH and big sister Daliah Jolie born 10/24/2006- 30 weeks premie. Vent- c-pap- nasal cannula. First surgery 10 days- on ECMO three weeks- second surgery at six months- Fundo- NJ- mickey button- cardio cath-lab at 8 months- spent nine months at Rady's Children Hospital NICU in San Diego-California. Came home on March 31st 2009 on nasal cannula- low flow- 100% oxygen and GT feedings- interested in food- but unable to swallow it. Cardio cath lab 3/2009- 8/20/09 and 2/9/10(Finally closed PDA)- 3/2/10 complication with pressures- 3/5/10 plug removed- PDA open again. Broviac 8/21/09- 12/3/09(came out- replaced)- 2/16/10(replaced again)- and 5/12/10 (repaired). Severe Pulmonary Hypertension- on Sildenifil- Bosentin- and Remodulin to treat it. Kiyari is a happy girl- loves to sing- dance and play peek-a-boo! Some language delays- but catching up!

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