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Thread: Currious

  1. #1


    hello everyone, Im still looking for some research after 8 years of my son being born, How can I find out if his father was carrying the gene or was it me? And how can I find out. Im engaged with a wonderful guy and which isnt my sons father and we're thinking about having a baby but I have my tubes tied and In order for me to have them reversed I wanna get some information first.
    Please email me if you have any advise Thank You so much!

  2. #2
    Welcome to Cherubs - you have came to a great place for support and we are here for you.

    Without a family history of CDH or genetic abnormality, the chances of having another CDH baby is very low (1-3%). You can always seek out a genetic counselor to talk about your odds of having another CDH baby or genetic abnormality. The genetic counselor will go over your child's records and your family's histories to see if there is a genetic abnormality that caused the CDH and to let you know your odds on having another baby with CDH. Some insurance plans don't cover gentic counseling, so check into that first if that is a concern.

    Nobody knows for sure what causes CDH, if it is genes or environmental or what causes it. You can't blame yourself or your ex. Until more research is done, we don't know the exact cause of CDH. Frustrating, I know. I have had two healthy children besides my CDH baby, one before Ian, and one after Ian.

    Would love to hear more about yourself and your son. How is he doing? Great news about your engagement and I wish you the best in deciding to have another baby. Let us know how it goes.
    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.

  3. #3
    In Boston they are doing CDH research.
    I know from talking to Meaghan that they will do testing for families.
    If you are interested, I will be more than happy to give you Meaghan's number.
    Tracy is right on with seeking out a genetic counselor.

    In reality...there is no known cause for CDH. The need for research is SO important.

    We are happy you are here at CHERUBS.
    COngrats about your engagement and wishing you all the best.

    We would love to hear about your son.
    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][/url] - Shelby's Journey [img][/img]

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