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  1. #1
    Join Date
    Sep 2010

    Default Testing for chromosomal abnormalities - Down syndrome etc

    I havent been on this site for a while but I found it very helpful when I was pregnant. Just scanning through posts over the months since I've been gone I see there are a number of questions regarding amnios, NT scans, risks of abnormalities etc etc. Of course every pregnancy has its risks, and of course we're all as nervous as hell and we want our pregnancy and our baby to be "perfect". But I want you to all reconsider what your definition of "perfect" is.

    The first instinct to say to a mother when she reveals a risk is "everything will be fine; good luck with getting clear results; or even, I hope your baby will be normal".

    When I was pregnant I had a 1:12 chance of my baby having Down syndrome. An amnio confirmed my baby tested positive. And yes, the bottom fell out of my world and I wanted the tests to be wrong. I wanted "perfect", I wanted "normal". And you know what, that's exactly what I got!!!

    Yes she has Down syndrome but she is "perfect", she is my "perfect".

    What I'm trying to say that a diagnosis of Down syndrome is not the end of the world, it's just a different one than you expect. But its no less amazing, gratifying and rewarding. Every achievement is a big deal and a blessing.

    And one of the best parts of having a child with Down syndrome is the new 'family' that you become a part of.

    So if you are in this position, and don't know what to do or where to turn, there is help available, there are people that have been there before and would love more than anything to help you (whatever you're own personal decision may be and not everyone makes the same one). So yes it's scary, actually no - it's terrifying - but you're not alone. Please ask and we'll come to you.

  2. The Following 4 Users Say Thank You to ChangedMyMind For This Useful Post:

    babyla  (31-07-2012),RaiensDreaming  (31-07-2012),starla  (31-07-2012),Stretched  (31-07-2012)

  3. #2
    Join Date
    May 2011
    Achievements:Topaz Star - 500 postsAmber Star - 2,000 postsAmethyst Star - 5,000 posts
    Great post and wonderful to hear such a positive story - thanks!

  4. #3
    Join Date
    Jul 2010
    I'd second that!

    If you find yourself in that scary position of getting prenatal dx of Down syndrome, please do your research. Talk to parents of kids with Ds. There are several of us on here, or your state's Down syndrome society/association should be able to out you in touch with someone.

    I was asked a while ago what I would say to parents who'd just received the news that their baby has Ds, and I would say "it's not going to be the way you think".

    Most peoples' perception of raising a child with Ds is SO far from the reality and I find it amazing (and pretty scary) that people are making massive, life-changing decisions like terminating a pregnancy, based solely on those perceptions.

    I guess what I'm trying to say is that if anyone wants to talk about this, I'm here too.

  5. #4
    Join Date
    Jan 2013

    Default Testing for chromosomal abnormalities - Down syndrome etc

    Lovely to read this my daughter has mosaic Edwards Syndrome (trisomy 18) and is beyond perfect if you ask me x


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