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  1. #1
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    Default Bad results after an amnio

    I had a call today fom my OB which caught me by surprise as I had been awaiting the results of my amnio but wasn't expecting any news until next week as we were waiting on Cystic Fibosis results as my hubby and I are both F508 carriers giving us a 25% chance tht our baby would have CF.
    instead my dr informed us that our baby has trisomy 13 or Patau syndrome. I never even sstopped to consider chromosome problems as I was so consumed with worry about the CF.
    does anyone lose have an information or personal experiences with trisomy 13? I'm being advised based on bloodwork and ultrasound to medically terminate the baby as they are surprised its still alive but that based on this weeks results it probably will die on is own soon.
    is trisomy 13 as bad as what I've been told and what I've read today? The chance of survival to full term is 10% and that the average days it will live is 2.5 days not to mention the massively long list of severe medical conditions it will be born with.
    Heart defects, spina bifida, brain not forming pproperly resulting in severe mental retardation, kidney issues, deafness, facial and limb deformities to name a few.
    this has come as such a shock and I'm struggling to process it all. I'm devastated and can't stop crying and I'm completely lost. What's right and how do u get past it all and move on?

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    Just wanted to say how sorry I am that you are facing this. sending love and strength.

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    No advice, just hugs.

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    LifeInShadesOfGrey is offline Just a little bit silly :)
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    No advice just hugs xx

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    No advice, I'm sorry. I had a miscarriage at 11 weeks in March. It was a missed miscarriage (no bleeding or pain) after having had seen a healthy heart beat during scans at 7 and 9 weeks but there was no heart beat at my 10.5 week "reassurance scan". As it was my second miscarriage in a row, we decided to get a D&C and get the baby tested this time and it came back as having Trisomy 13 All the googling I did on it was very very scary. We had chromosome testing when we first started with my FS and it came back all clear so we know it wasn't hereditary. Our 2 year old daughter is perfectly healthy, thankfully

    Apparently it's a 1-in-10,000 chance for anyone to fall pregnant with a baby with trisomy complications and my FS said its most likely the biggest reason for miscarriages....it's just that most people don't get bubs remains tested to see if there was any chromosome problems with him/her. If you think about just how common miscarriages actually are, it kinda makes sense.

    I'm so sorry you're going through this and I'm wishing you super strength to get through this nightmare, it took me a while I'm not sure if you'd prefer for bub to pass away on it's own or to terminate (I'm certain you'd prefer neither!!) but I hope whatever happens is the least painful way for you. Is it a "highly likely to have T13" diagnosis or a 100% definite with no chance of it being wrong?? I've heard of problems that were picked up just on ultrasounds being wrong or exaggerated but I don't know how accurate the amnio is? I guess if I were in your shoes, that's what questions I'd be asking. Be kind to yourself Hun xx

    If you don't mind me asking you a question....have you had your 12 week scan and did it show the trisomy problem as well as the amnio??
    Last edited by Ladydee; 16-05-2014 at 17:31.

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    KaraB  (17-05-2014)

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    Quote Originally Posted by Ladydee View Post
    . Is it a "highly likely to have T13" diagnosis or a 100% definite with no chance of it being wrong?? I've heard of problems that were picked up just on ultrasounds being wrong or exaggerated but I don't know how accurate the amnio is? I guess if I were in your shoes, that's what questions I'd be asking. Be kind to yourself Hun xx
    Amnio is 100% accurate.

    OP there seems like there's no right decision in this situation.

    There is an awesome thread on here by a lady named Ally who had a similar diagnosis (T13 or t18 - I can't remember specifically sorry!) but hopefully someone can link to it. She made the decision to continue with her pregnancy after diagnosis but sadly her baby passed away at around 32 weeks.

    good luck!!

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    OP I'm so sorry you're going through this

    Quote Originally Posted by wannawannabe View Post
    There is an awesome thread on here by a lady named Ally who had a similar diagnosis (T13 or t18 - I can't remember specifically sorry!) but hopefully someone can link to it. She made the decision to continue with her pregnancy after diagnosis but sadly her baby passed away at around 32 weeks.
    good luck!!
    I think this is it:http://www.bubhub.com.au/community/f...-syndrome-baby
    Last edited by sky1; 16-05-2014 at 19:46.

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    No advice hun. Im so sorry you are going through this and i wanted to send you lots of hugs xx

    Sent from my GT-I9305T using The Bub Hub mobile app

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    That's the one - thanks for finding it sky1.

    Shankat my brother and SIL terminated a pregnancy last year because of a diagnosis of t13. They did it because it was right for them at the time. If you don't want to terminate then you don't have to. There is nothing wrong with continuing as long as you can if that us what you want.

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    KaraB  (17-05-2014)

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    Thank you all for the hugs it's nice to know that you are not alone and that people you don't know and haven't met can show kindness and compassion without judging.
    Ladder thanks for sharing your heartbreaking experience too. My dr says the chance of this happening to me again is less than 1%. Still it doesn't help this baby.
    i never really had a 12 week nuchal fold test and scan due to the fact that normally in my past pregnancies I've been able to have a cvs between 10-12 weeks, which Incase you hadn't heard about it is a procedure that pierces the abdomen through to the uterus and takes part of the placenta. Just a small amount enough to do genetic testing. However this pregnancy was a bit more complicated as I have a retro inverted unterus and I had a low lying posterior placenta. Meaning basically that the cvs was impossible to do forcing me to wait until 14 weeks to have an amnio.
    With my other pregnancies I had results in the 12th week which is around the time when the nuchal test is done making it useless to perform as the cvs s far more conclusive with results. Because we tried multiple times for the cvs up until 13 weeks I never thought to have the 12 week scan.
    there were warning signs that things weren't right though now that my hubby and I and my OB look at it. Small fetal size and placenta and slow growth. My dates kept getting pushed back and further back which I never believed anyway. I saw some unny expressions from the sonographer performing the ultrasound the other day and the sspecialist performing the procedure seemed concerned about something too.
    So I guess the signs were all there and my OB says that the morphology scan at 18-20 weeks would have definitely shown up multiple problems.
    I think if the baby passed naturally it might be a little easier. To make the choice to end it now would be harder even knowing that it's not going to survive for much longer. I don't want o cause this baby anymore suffering and pain than it's already been dealt. I have been advised that labour and delivery might not be the best option due to how deformed the baby might be.
    I'm scared of wwhat a D and E would do to my baby. A fetal medical consultant called me today and informed me that if I'm under a general anesthetic then the baby will be too and won't feel the awful procedure. I don't know whether to believe him or not. How do they really know what a baby feels. I'm not saying he's lying just that I'm distraught and don't know what to do or me, my family or bubs. It's breaking my heart to say goodbye to this little surprise bundle of joy.


 

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