thread: Urgent help please! Chromosome 18 questions

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  1. #1
    Registered User
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    Dec 2011
    Central Coast NSW
    502

    Just get her to drive down to you and present in emergency at JHH hun. The wait will kill her.

    Hugs to you all
    I second this - at least the bigger hospital will be able to help a lot more. It doesn't sound right the info she has been given, especially if they knew 4 weeks ago and did nothing.

    Lots of hugs for your sister

  2. #2
    Registered User

    Sep 2008
    Sydney
    1,413

    I was told at 9 weeks that our baby had possibly trisomy 13 or 18. This was because of high nuchal fluid (what they look for at the 12 weeks scan). We had CVS done and this was ruled out for us. We were told that trisomy 18 is incompatible with life. I am so sorry your sister is going through this. I just don't understand how if they hospital new this why they didn't tell her and organise for more testing, scans and genetic counselling.
    There is a charity called HEARTFELT (google it) and they take photos of seriously ill babies and stillborn babies free of charge. Maybe this is something you could organise for your sister?

  3. #3
    Registered User

    Oct 2007
    Middle Victoria
    8,924

    We were told that trisomy 18 is incompatible with life.
    tHIS is not actually true. A small number of people with trisomy 18 have lived until their teen years, although they have had serious medical issues.

    Hope your sister gets information so she can make decisions about any medical decisions.