December 2016 Moms

NIPT TESTING RESULTS

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Re: NIPT TESTING RESULTS

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  • Mamax2Mamax2 member
    I got a phone call this morning from a genetics counselor at my perinatologist office. He said that our Harmony results came back inconclusive for the 2nd time. The lab is saying there isn't enough of the baby's DNA in my blood. The guy went on to say that that could be normal, or it could be a sign of chromosomal problems with the baby. He threw out a couple of options that DH and I aren't really comfortable with, so we will continue to monitor the baby and growth via ultrasounds. I can't help but freak out still. I'm a mess today.
  • Mamax2 said:
    I got a phone call this morning from a genetics counselor at my perinatologist office. He said that our Harmony results came back inconclusive for the 2nd time. The lab is saying there isn't enough of the baby's DNA in my blood. The guy went on to say that that could be normal, or it could be a sign of chromosomal problems with the baby. He threw out a couple of options that DH and I aren't really comfortable with, so we will continue to monitor the baby and growth via ultrasounds. I can't help but freak out still. I'm a mess today.
    @Mamax2 hoping everything is ok. There's been a lot of ladies it seems like complaining about the Harmony test. Did you do the NT scan? 
    Met DH - 9/2003
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  • Mamax2 said:
    I got a phone call this morning from a genetics counselor at my perinatologist office. He said that our Harmony results came back inconclusive for the 2nd time. The lab is saying there isn't enough of the baby's DNA in my blood. The guy went on to say that that could be normal, or it could be a sign of chromosomal problems with the baby. He threw out a couple of options that DH and I aren't really comfortable with, so we will continue to monitor the baby and growth via ultrasounds. I can't help but freak out still. I'm a mess today.
    I'm so sorry you're going through this. FX everything is okay.

    Me: 33     H: 36

    Married: 12/14/13   DS: 1/29/09

    BFP2: 10/9/15  MMC: 11/12/15

    BFP3: 4/6/16   DD: 12/12/16


  • @mamax2 I can understand how distressing that would be! Sending positive vibes your way! 
  • Our NIPT was such a nightmare. I haven't been following the group for a while because I was so upset by the experience and afraid we would not have a successful pregnancy. We did the NIPT (Verifi) test at exactly 10 weeks. Less than a week later got the call that the test was abnormal with monosomy X (Turner's syndrome). The next day I had to meet with a genetic counselor, who offered a number of follow up tests to figure out whether it was a real results or a false positive. We did the NT scan a few days later, which was entirely normal. We did the CVS a few days later and results just came back end of last week as normal 46XX chromosomes. Now we are trying to figure out if we should do an amnio also. So much testing!!! If this baby had been conceived 2 years ago, we never would have done the NIPT, never would have had to deal with the CVS/amnio (because the NT was normal) and wouldn't have spent the last 3 weeks in such distress. Our genetics counselor let me know that they think the false positive rate in real use is much higher than reported by the companies (close to 50%!!) If I were ever to be pregnant again, I would never do this test. I feel compelled to put our story out there because the only reason I didn't go off the deep end was because of all of the internet stories about false positives. 
    Still have to decide about the amnio, but I feel pretty confident we have a healthy baby girl. 
  • @Mamax2 - sorry, I'm sure everything is just fine.  FX for you. 

    @galore5, my OB was super honest with me about these tests and said the false positive rate is WAY higher than advertised in her experience.  When would you have to do your amino?  How far before your A/S window?  They can find a lot of abnormalities in that scan and obviously way less invasive. If the timelines are close, maybe you wait to see what the A/S looks like?
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  • @galore5 I'm so sorry you're going through all this. I really hope it is just one of those false positive situations. They really do sound pretty common. If it's worth anything, one of my best friends all through high school had Turner's syndrome. We graduated together in the top 10% of our class and now she's a teacher. 
  • @Mamax2 - I hope everything turns out ok.

    @galore5 - the genetics counselor we spoke with said the false positive rate is much higher in women under 35, and that the NIPT wasn't actually really studied in women under 35 but is often offered to them.  She discouraged us from getting it for this reason.
  • Mamax2Mamax2 member
    Mamax2 said:
    I got a phone call this morning from a genetics counselor at my perinatologist office. He said that our Harmony results came back inconclusive for the 2nd time. The lab is saying there isn't enough of the baby's DNA in my blood. The guy went on to say that that could be normal, or it could be a sign of chromosomal problems with the baby. He threw out a couple of options that DH and I aren't really comfortable with, so we will continue to monitor the baby and growth via ultrasounds. I can't help but freak out still. I'm a mess today.
    @Mamax2 hoping everything is ok. There's been a lot of ladies it seems like complaining about the Harmony test. Did you do the NT scan? 
    We did have the NT scan done, but the baby wouldn't stay still long enough for them to get the measurements needed. As soon as the US tech tried to measure, the baby would turn or curl up.
  • Mamax2Mamax2 member
    Thanks ladies for your support. 

    @galore5, I'm sorry you're going through that. Positive thoughts sent your way.
  • sammyl1221sammyl1221 member
    edited June 2016
    @mamax2
    I am so sorry you're dealing with this! Did you have your NT scan yet? I did the panorama test, NT scan, and then at my 2nd trimester bloodwork they told me they were checking AGAIN for down syndrome along with other things, when everything came back negative. I asked why and they said even with all the scans and screenings- its never 100% accurate and false positives and false negatives can happen. Try not to stress too much about it. 

    @galore5 that sounds like such a nightmare to be dealing. I am so sorry, but stay positive! Congrats on the little lady!! 
    Me: 29
    DH: 30
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    TTC since June 2015 
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  • @Kacie209 We actually had the Progenity test. Our OB insists on having an affordable option for patients, and the price is capped at $99. 

    @Mamax2 I am so sorry you're dealing with all this ambiguity. I hope you are able to get answers very soon. I'm hoping and praying for a positive outcome for you!
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  • Mamax2Mamax2 member
    Thanks @LinziLoo09! I'm at the perinatologist now awaiting my 16 week ultrasound. They're going to try again to get measurements, since they were unsuccessful last time.
  • Oh I hope it goes so well for you, hun!!!
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  • @Mamax2 - keep us posted.  FX for you.
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  • I had blood drawn for the Harmony test on 6/13. Got a call 6/24 that the test was inconclusive :/ Went back on 6/27 and did it again. Now I'm just waiting to hear back. So very anxious. I hope everything is okay. 
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  • Mamax2 said:
    I got a phone call this morning from a genetics counselor at my perinatologist office. He said that our Harmony results came back inconclusive for the 2nd time. The lab is saying there isn't enough of the baby's DNA in my blood. The guy went on to say that that could be normal, or it could be a sign of chromosomal problems with the baby. He threw out a couple of options that DH and I aren't really comfortable with, so we will continue to monitor the baby and growth via ultrasounds. I can't help but freak out still. I'm a mess today.
    Hang in there. My tests came back inconclusive twice as well, and the doctor said that actually might be a GOOD thing, not a bad thing. I ended up taking another blood test that requires less of the baby's DNA (doesn't tell you the sex), and everything came back low risk. Have hope!
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  • Although our results came back a few weeks ago and I posted about them, checked the bill today, as I had seen that it was being finalized for the last week from the Harmony Test. Our OB said it would be about $135 out of pocket if insurance didn't cover it. Um, it was $3,490. Thankfully, it was covered. But wow, was not expecting that. I guess my insurance isn't that bad, ha.
    Me: 37 years old
    DH: 39 years old
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  • I just saw the claim from my testing... $6500! I'm so glad it's covered.

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