October 2022 Moms

NIPT questions

So I had gotten my nipt test done at 9 weeks 3 days.. The doctor called said my child was high risk for t21 down syndrome. Has any one gone though these tests? What the accuracy is. I plan to see a socialist get more testing but im just so stressed out. Seeing if there are any success stories about theses tests

Re: NIPT questions

  • I'm still waiting for my results, but we and an appointment with a genetic counselor prior to the draw. She mentioned that one of the most important things to remember is that these are screening tests, not diagnostic. Depending on what your numbers are, there are different risk levels. The next step if you want to get more information would be to do a diagnostic test like an amniocentesis or CVS. You could also choose to wait to have an anatomy ultrasound to see if there are other risk markers they can identify, but from what I understand there are not always able to identify all Downs Syndrome abnormalities via ultrasound. 

    In general the NIPT does err on the side of identifying all possible risks so that they don't miss identifying crucial things; however, Downs Syndrome is one of the most accurate risk assessments in the panel. The company through processed your test should be able to provide the accuracy statistics as well. 

    I'm so sorry that you're stuck in a stressful waiting pattern. Sending you lots of strength in the interim. 
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  • Try and stay calm as hard as it is. While the test is accurate in many ways it can also give false positives at times. Meaning some markers may not actually mean your baby has t21.  Either way seeing a specialist for More testing and information will be really helpful! Hang in there! 
  • Thank you. Doing my best to keep positive I speak to specialist Monday and go from there. 
  • Although false positive are not impossible, in general the NIPT is fairly accurate.  The next step will likely be a CVS to confirm.  While it's important to be optimistic, I don't want to sugarcoat it either - the accuracy rate for Down's in the NIPT is 99%.  You'll likely want to meet with a genetics counselor to discuss outcomes and options.
    Current pregnancy -
    First BFP on 1/4/22.  Due date 9/13/22.

    Four prior losses, no living children - 1 first trimester miscarriage, 1 blighted ovum, 1 chemical, and one extreme premature live birth daughter who died at 15 days old.


  • I had mine draw on Friday and as of yesterday and even this morning it said "in processing" when I just checked it's no longer showing up at all. Has me a little panicked now
  • pangolindromepangolindrome member
    edited March 2022
    9 weeks sounds early. Our doctor said NIPT was between week 11-14. I don’t know if that would affect anything, but isn’t it early?

    I am sorry that you are having this stress!!!!!!
  • Some labs can test as early as 9 weeks. Ours was anytime after 10 weeks. If there aren't sufficient fetal cells present then the results will be inconclusive and would require a redraw.
  • @pangolindrome I think it’s the NT scan that it is 11-14 weeks, different test. I had my NIPT at around 19 weeks last time. 

    @ctcollins9109 I hope your appointment went well yesterday❤️
  • Thinking about you @ctcollins9109!

    and I actually DO know a friend firsthand who received the same “risk” of her baby having Down syndrome. They went through all the steps, specialists, genetic testing etc and it was actually a false alarm. Her baby absolutely does not have DS (or any other syndrome). Not sure if you have your results yet. And I don’t want to get hopes too high one direction but I’ve seen it happen. I wonder if the blood draw was done too early? 
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