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Thread: Trisomy 13 18 high risk!

  1. #1

    Join Date
    May 2010
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    Default Trisomy 13 18 high risk!

    Hi
    I just have my NT scan and bloods calculated and the downs risk is normal 1:794



    the trisomy 13/18....
    back ground risk 1:881 (age)
    ultrasound risk 1:3139
    biochemistry 1:20

    so my calculated risk is 1:78.
    Someone!
    Anyone!
    Tell me your story...
    Good or bad. Its actually hard to find things online about this..

  2. #2

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    answered your post in the belly buddies thread,
    HUGS!

  3. #3

    Join Date
    Sep 2008
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    Hun, I have been where you are and I know just how scary this journey is. I forget the stats for myself but bascially it want even at my 12 week nuchal scan that we found out our risk. I was only 9 weeks and the fluid looked so bad that they didnt even bother doing the blood tests. I remmber the ultrspound doctor telling me through that I was in the same category as someone being 47 and having a bay - and I was 26 at the time!
    I was advised to terminate as told it was trisomy 13 or 18 and incompatible with life but I refused till I knew more info. We had to wait till 1.5 weeks to have cvs testing - which was a huge decision as I was very scared of the miscarriage risk, but in the end I knew that I could not wait the whole of the pregnancy emotionally or mentally without some answers, so we had the cvs done and genetic counselling. The Cvs quick results came back in 2 days and the rest in 2 weeks. They were all clear. However then we were told it may be a cardiac defect so ha scans every week-2 weeks.
    We were told by the geneticist that if the cvs came back clear, plus if the fluid had resolved by the 19 week scan and if no other abnormalities were found, then there was a very god chance our baby would be fine. It was fine at 19 weeks, then we had to have a cardiac scan at 24 weeks and was still scanned and monitored very closely the rest of the pregnancy. Obviously was incredibly scary and terrifying, but in the end we had our miracle DD. And she was born happy and healthy.

    You will hear scary stories but also lots of postive outcomes like mine, if you have any more questions please ask me!

  4. #4

    Join Date
    May 2008
    Location
    Melbourne, Vic
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    Default Trisomy 13 18 high risk!

    My story is almost identical to the above story... Except we didn't wait to have CVS, we had it straight away.

    We were told we had a one in ten chance of baby being born normal and healthy

    She is now a happy, healthy, NORMAL 18mth old. She was born fine, absolutely perfect.

    Don't lose hope - take each day as it comes, step thru each test and set of results are they are available, and the most important thing - stay away from Dr Google!! Google is not your friend.

    All the best - if you have any questions or anything, I'm here for you

  5. #5

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    May 2010
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    Thanks so much. I feel better. We have heard more stories about people who had a 1:2 chance and up to 1:20 chance and they are all ok.
    We are trying to forget it, be positive and wait till our 16 week scan. They haven't pushed for amino as the scan was so good and we have been told to wait till a scan at 16 weeks then again at 18 weeks.
    I know we have a 77:78 chance of everything being ok.
    Thanks for sharing your story.

  6. #6

    Join Date
    Apr 2009
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    central coast
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    I was a 1 in 2 high risk we had a CVS and amnio both came back all clear but at our early morph scan we were not so lucky we have since found out we are carriers of a rare genetic condition so my risk is automaticaly 1 in 4 now with every pregnancy and i have to go straight for a CVS at 11 weeks so i understand your concerns as i am currently 5 weeks pregnant i have a 75% chance this baby is normal and a 25% chance it is not it is a very scarey time but i try to be positive and hope the nature has chosen a healthy baby for us this time.
    Good luck i hope it all turns out for the best.

  7. #7

    Join Date
    Dec 2007
    Location
    Geelong
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    The ladies have given you great advice, wishing you the very best.

    Regards,
    Dianne

  8. #8

    Join Date
    May 2010
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    Default

    Pushing this thread back up for anyone else who has had similar results.

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