Special Needs

Down Syndrome Testing

So I had my blood test and first trimester ultrasound, and the doc says I have a 1 in 77 chance of having a baby with down syndrome.  DH and I want to keep the baby no matter what, but refuse to do an amniocentesis because we don't want to risk miscarriage. 

Have any of you been in my situation?  Did you go on to the second set of blood testing to find out for sure if you the baby did have it?  Would you want to find out for sure or wait until the baby is born to see if he/she does have it?

 I let myself have one day to be an emotional wreck but now I have decided to be strong for my baby.

Re: Down Syndrome Testing

  • No experience, but a poster on the Parenting board is in the same position. I think here odds came back as 1:7. I think her Bump name if Femmegen. I opted not to have any testing done during both my pregnancies. The odds of a false positive are high. I hope everything turns out fine.
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  • First I would say that I know people who have opted to have the amnio and who have not.  If you want to be certain and prepare yourself, the risk of miscarriage is very small.  I had an amnio and it was a very routine procedure and much less scary than I had expected.  I would also note that 1 in 77 is still pretty small odds so it's pretty likely that your child will not have down syndrome. 

    There are several women who have babies with down syndrome on this board.  Their children seem to be highly functioning and wonderful children.  There are health problems that can be associated with down syndrome but many people with down syndrome live very rich lives.

  • Hi! I am  normally a "lurker" on this board. I have a 3 month old son who has Down Syndrome.  We had a positive AFP test which showed a 1 in 31 chance of our baby having DS.  We also had an ultrasound which showed thickening of the neck.  We always knew that we would keep our baby but decided to do the amnio just to be sure either way.  I am so glad we did because it gave us sooo much time to become educated and prepared.

    I wish the best of luck to you.  If you have any questions please let me know. **HUGS** I know this is a really tough time for you.

    Mommy to an amazing boy <3 Brandon 10.01.09 Born with Down Syndrome <br> http://www.downsyndrometalk.com
  • MD (orig poster)- I just got the same odds today as well. Deciding on next steps. I agree this is nerve wracking but our odds are still not too bad.
  • Thank you ladies, it helps to hear other people's point of view.
  • My odds were 1 in 191 for ds to have down syndrome... we refused to have the amnio because of the m/c risk and I had already had a prior m/c.. the waiting until birth to find out was hard.. ds  also had a marker that we saw during the big ultrasound.. he had a spot on his liver but everything else looked good. Our ds ended up not having Down Syndrome.. when i get preg w/ #2 I will not be doing these tests again.. the false positive rate is too high. GL to you
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  • we had 1 in 35 chance with ds #1 and had a level 2 ultrasound that showed no markers so then it changed to 1 in 70.  refused the amnio as it didn't matter and found out at birth ry has Down syndrome.  it's extra work, but sooo worth it.  he's more typical than not and is so much fun!  hope you're doing ok-i remember like it was yesterday what an emotional time it was, but now laugh at how worried i was for nothing!
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  • imagekchoi:
    we had 1 in 35 chance with ds #1 and had a level 2 ultrasound that showed no markers so then it changed to 1 in 70.  refused the amnio as it didn't matter and found out at birth ry has Down syndrome.  it's extra work, but sooo worth it.  he's more typical than not and is so much fun!  hope you're doing ok-i remember like it was yesterday what an emotional time it was, but now laugh at how worried i was for nothing!

    This EXACTLY!! Our odds were 1:5 and no markers on our level 2 ultrasound. We did do the amnio, and it was good for us to know before hand. I wouldn't trade her for anything!

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