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Thread: Caleb's struggles

  1. 04-09-2016, 11:59 PM #1
    MayanTenorio
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    Caleb's struggles

    Hello everyone my name is mayan tenorio. My son Caleb was born in guam on July 28,2015... I guess you can say he was undiagnosed because the doctors didn't find his condition until he was 8 days old...he was diagnosed with right sided cdh. Don't really know how to handle this because here on guam the doctors don't really know what to do so they tell me we are just going to go day by day with him...so i am really hoping to get some help and guidance to how to keep my son Alive anything will help alot..don't know what else he has because they never ran any test so I'm pretty much on the blind side and read everything on Google about the condition because no one here on guam really knows
    Last edited by MayanTenorio; 04-10-2016 at 12:03 AM.
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  2. 04-16-2016, 05:47 PM #2
    Chris and TracyMeats
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    I am so sorry your son has been diagnosed with CDH. 15% of cases to this day still go undiagnosed.

    Have you asked the doctors to consult with other doctors in the states or other countries? It can be very scary to have the doctors not experienced in CDH and not knowing what to do. Has your son had his CDH repair surgery?

    Praying for strength for Caleb.
    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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  3. 04-16-2016, 08:34 PM #3
    LHenderson
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    I'm so sorry to hear of your diagnosis. We will pray for you.
    Laura Henderson
    Missouri State Representative
    Mom to Lucie, LCDH survivor
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  4. 04-18-2016, 04:23 PM #4
    NicolleColvin
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    Thinking of you and your sweet boy. I hope you can seek outside countries to see if they could be of any assistance, please keep us posted!
    Nicolle Colvin Mommy to Kasey James 11.16.08-12.19.08 Colorado Representative colorado.cherubs@gmail.com http://cherubscolorado.blogspot.com/
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  5. 04-25-2016, 09:46 PM #5
    AmandaPlakholm
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    I'm so sorry Caleb has been diagnosed with CDH. Praying that the doctors consulted with some Dr's with experience.
    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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