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Thread: Heine, Matthew

  1. #1

    Heine, Matthew

    When Matt was 10 we took him to the allergist. He had always had trouble breathing fully and we figured we should finally have him checked for asthma. She did a peak flow meter test on him and he blew surprisingly low. So low that she thought she better send him for a chest x ray. What we saw on the x ray surprised us all! His chest cavity was full of intestines! Our doctor thinks that Matt was born that way and somehow just survived it. I can't believe we didn't find all of this out until he was 10; we had taken him for well checks every year since he was born. Why didn't anyone discover this sooner? He had it repaired shortly thereafter at CHOP and they did an amazing job. Matt is now in high school and has been very active in both football and lacrosse since. I am thankful for a happy ending to our story, but my heart breaks for the stories that I am reading about that don't end as well. God be with you.

  2. #2
    Wow! That's an amazing story Carrie! Do you live in PA? My son's CDH was diagnosed at birth and he was taken to CHOP for treatment from my local hospital. We are from Bucks county, PA but moved to North Carolina in 2013. My son was born with a R-CDH and will be 7 in March.
    Mom to Brooke-3/22/04- Braden-3/13/08-RCDH diagnosed at birth- treated at CHOP- CDH repair at 1 day old- home on day 12- Orchiopexy for undescended testicle (4/13/09)- Myringotomy with tubes bilateral (ear tube surgery-7/6/10)
    North Carolina State Co-Rep http://i291.photobucket.com/albums/l...bon-braden.jpg Braden's video http://www.onetruemedia.com/shared?p...edium=text_url

  3. #3
    Carrie that is amazing, sounds like your son is a miracle. What a great allergist. So happy that Matt is doing so well, does he have follow ups?
    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.

  4. #4
    Welcome to CHERUBS Carrie! What a story and so glad to hear Matt is here today and doing so well! There could have been a ton of factors of why it was missed all those years, but he must have had his lungs develop pretty good. Did you ever notice any eating difficulties over those 10 years?

    Your allergist was on it that day!

    Does Matt have any asthma or lung issues to present day?
    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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