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Thread: Newly Diagnosed with CDH

  1. #1

    Newly Diagnosed with CDH

    Hello, I am new to the group. My baby girl was diagnosed with CDH on my 16w ultrasound and I am seeking support and advice on what to expect, what facilities to research, basically any information you can send my way. Thank you in advance, Iím so emotional, but Iím trying to understand it all.

  2. #2
    We are so glad you found us. Unfortunately, our forums are quiet, not much activity anymore. They are great for searching and reading things, but most of our parents post over on social media in our closed main support group on Facebook, https://www.facebook.com/groups/cdhsupport. You will get great feedback there and meet so many new families. Starting March 27th at 9pm EST I will be doing live chats in the group where we can talk too.

    What hospitals have you visited? I would start with your big children's hospitals and facilities with ECMO, they are more likely to have taken care of a CDH baby. We will be putting a Parent Reference Guide in your care package we send out this weekend, but you can also look at it on the website, https://cdhi.org/wp-content/uploads/...ence-Guide.pdf. Inside is a list of questions to ask facilities when you visit. Finding that team you feel comfortable with and one that will fight for your baby is the first place to start.
    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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