NT/NIPT Discussion Thread — The Bump
October 2019 Moms

NT/NIPT Discussion Thread

This is a thread for everyone to discuss testing options, ask questions, share results, etc.

Note: possible trigger warnings ahead.
nnaelilak
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Re: NT/NIPT Discussion Thread

  • galentinegalentine
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    edited March 8
    My insurance apparently covers the NIPT, but not the NT scan. Any thoughts on whether the NT is worth doing out of pocket? I'm under 35 with no risk factors and have no idea what it would cost out of pocket....
  • @galentine I would find out how much the NT scan would cost out of pocket. There are women on this board who highly recommend it because your blood work can come back looking great, but the scan could spot a problem.
    Me: 34 DH: 49 Married October 2015
    TTC #1 since July 2018
    galentinechichiphin
  • sorarosesorarose
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    @galentine So interesting. I don't know what is the policy since my last pregnancy, but my insurance covers the NT scan, but not NIPT for under 35 as far as I know. I want the NIPT so badly. 


  • I had the NIPT bloodwork done today (100% covered) but my doctor won’t order the NT scan unless something comes back on the bloodwork.  I just asked my insurance and they said NT scans are also 100% covered as long as they are medically necessary.  

    @elle-0409 my doctor said the exact opposite when I asked if I should do both 🤦🏻‍♀️ Why can’t all doctors just agree on this kind of stuff.  

    All input is appreciated from mothers who have had these done before.  
    elle-0409sorarose
  • @galentine ; That's weird about your insurance covering the NIPT but not the NT u/s. 

    Not sure what my insurance covers but I will be getting the NTs scan at 12 weeks (on 4/2) as well as getting a blood-draw for 1st tri. At this point, they also said I could do the NIPT but I'm almost certain insurance will not cover (I'm not AMA and low risk). I really would like to do it, and I've heard that even when you get a ginormous bill, you can call the company of the test to ask for discounts and it brings it down to like $200.
    TTC #1: September 2013, BFP 01/01/14, DS 09/14
    TTC #2: October 2018, BFP 02/02/19, EDD 10/14/19



  • @emily1052, my doctor said the same: she doesn't order the scan unless something in the bloodwork comes back high risk. I understand the thought process, but realistically the scan could potentially identify something that wouldn't even show up in the bloodwork (just like @elle-0409 said). It's frustrating when insurance only covers some things and not others. I wish there was a more clear answer.
  • cmbt2cmbt2
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    galentine said:
    My insurance apparently covers the NIPT, but not the NT scan. Any thoughts on whether the NT is worth doing out of pocket? I'm under 35 with no risk factors and have no idea what it would cost out of pocket....
    Depending on the NIPT, it tests for the same things as the NT and then some 
    BFP #1 3/07, EDD 11/12/07, MMC 5/7/07
    ~~~  ~~~  ~~~
    BFP #2 5/4/14, EDD 1/15/15, DS1 1/19/15
    BFP #3 8/19/16, EDD 4/30/17, DS2 4/25/17
    BFP #4 12/22/18, EDD 9/6/19 - CP 12/29/18
    BFP #5 1/18/19, EDD 10/3/19, It’s a Girl!
    ~~~  ~~~  ~~~
    High Risk Dx (6/14):  Homozygous MTHFR C677T, protein C & S deficiencies
  • cmbt2cmbt2
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    sorarose said:
    @galentine So interesting. I don't know what is the policy since my last pregnancy, but my insurance covers the NT scan, but not NIPT for under 35 as far as I know. I want the NIPT so badly. 
    The majority are $200-300 out of pocket with no insurance if you wanted to go that route
    BFP #1 3/07, EDD 11/12/07, MMC 5/7/07
    ~~~  ~~~  ~~~
    BFP #2 5/4/14, EDD 1/15/15, DS1 1/19/15
    BFP #3 8/19/16, EDD 4/30/17, DS2 4/25/17
    BFP #4 12/22/18, EDD 9/6/19 - CP 12/29/18
    BFP #5 1/18/19, EDD 10/3/19, It’s a Girl!
    ~~~  ~~~  ~~~
    High Risk Dx (6/14):  Homozygous MTHFR C677T, protein C & S deficiencies
  • cmbt2cmbt2
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    I do all the blood work. I also have my A/S done at 18w. I did the quad screen with DS1, panorama + NT with DS2, and I’ll just be doing panorama with this one. I asked if I should do the NT again, but panorama tests for the same stuff and then some.

    *im going to TW the rest of this*TW*TW*

    We would TFMR if it came down to a trisomy or SB. The panorama screens for this, so im comfortable with that. My A/S are done with level 2 machines at 18w, which is when they can pick up other defects that would lead to the same decision (note, we would do CVS/amnio to confirm before making any final decisions).
    BFP #1 3/07, EDD 11/12/07, MMC 5/7/07
    ~~~  ~~~  ~~~
    BFP #2 5/4/14, EDD 1/15/15, DS1 1/19/15
    BFP #3 8/19/16, EDD 4/30/17, DS2 4/25/17
    BFP #4 12/22/18, EDD 9/6/19 - CP 12/29/18
    BFP #5 1/18/19, EDD 10/3/19, It’s a Girl!
    ~~~  ~~~  ~~~
    High Risk Dx (6/14):  Homozygous MTHFR C677T, protein C & S deficiencies
    nnaelilakPleaseSendPicklesNowPenelopeSnuz77
  • @cmbt2 what is the pro to doing a 18w a/s vs 20w? Just more time if you decide to TFMR? 
  • cmbt2cmbt2
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    @nnaelilak mine have always just been done at 18w. they can find what they need at that point and identify issues early. Standard is any time
    between 18-22w. I’ve actually never asked why my providers do it at 18w vs later in that time frame 🤷🏼‍♀️
    BFP #1 3/07, EDD 11/12/07, MMC 5/7/07
    ~~~  ~~~  ~~~
    BFP #2 5/4/14, EDD 1/15/15, DS1 1/19/15
    BFP #3 8/19/16, EDD 4/30/17, DS2 4/25/17
    BFP #4 12/22/18, EDD 9/6/19 - CP 12/29/18
    BFP #5 1/18/19, EDD 10/3/19, It’s a Girl!
    ~~~  ~~~  ~~~
    High Risk Dx (6/14):  Homozygous MTHFR C677T, protein C & S deficiencies
    nnaelilak
  • My insurance thankfully covers the NT scan. I thought it was covered by the state through the CA prenatal screening program
    but apparently it only covers the blood test and the quad screening (if you take the second blood test) but not the NT scan. My insurance doesn’t cover any other genetic testing unless it’s medicinally necessary (AMA, high risk etc). 

    ***TW*** My son screened high on the threshold for spina bifida, but the NT scan ruled it out thankfully. We had a follow up US and had to meet with a genetic counselor and it was one of the scariest experiences ever. I am choosing to do the screen again, just so I’d there is something wrong that I can make an informed decision. 

    Also, I’ve had all of my prenatal appointments scheduled out till June and my midwife had put in an order for the A/S st 18 weeks, no later than 20 weeks. 
    PleaseSendPicklesNowgalentine
  • @PleaseSendPicklesNow I'm so sorry for your loss 💚 that makes total sense and I think I'll schedule mine for earlier this time 
    PleaseSendPicklesNow
  • @nnaelilak Glad to help! I take a lot of comfort in knowing that our story might help someone else avoid our situation. Wishing you a very uneventful anatomy scan.  :)
    nnaelilak
  • For those planning to get the NIPT blood test, how far along do you plan to be?

    I was originally planning to get it done at my next appointment at 12w5d, but now I'm considering just walking into the blood center this week (maybe 10w5d) since it doesn't require an appointment. That way my results could potentially be back in time to discuss with at my next OB appointment.
  • @galentine My doctor had to refer me out for blood work and they complete usually at 12 weeks so they can do NT scan at the same time. So I will be 12+1 when I go in for blood-draw.
    TTC #1: September 2013, BFP 01/01/14, DS 09/14
    TTC #2: October 2018, BFP 02/02/19, EDD 10/14/19



    galentine
  • cmbt2cmbt2
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    galentine said:
    For those planning to get the NIPT blood test, how far along do you plan to be?

    I was originally planning to get it done at my next appointment at 12w5d, but now I'm considering just walking into the blood center this week (maybe 10w5d) since it doesn't require an appointment. That way my results could potentially be back in time to discuss with at my next OB appointment.
    I’ll be 12w+1. It’s not recommended to do it before 12w because there’s a higher chance of there not being enough fetal cells in your blood
    BFP #1 3/07, EDD 11/12/07, MMC 5/7/07
    ~~~  ~~~  ~~~
    BFP #2 5/4/14, EDD 1/15/15, DS1 1/19/15
    BFP #3 8/19/16, EDD 4/30/17, DS2 4/25/17
    BFP #4 12/22/18, EDD 9/6/19 - CP 12/29/18
    BFP #5 1/18/19, EDD 10/3/19, It’s a Girl!
    ~~~  ~~~  ~~~
    High Risk Dx (6/14):  Homozygous MTHFR C677T, protein C & S deficiencies
  • @cmbt2, I did see there is a possibility of not having enough fetal DNA if you test too early, but the article I read said only about 5% of tests come back with no result due to not enough fetal cells. I don't know. I think I might be willing to risk needing a second draw so we can hopefully discuss the results with the OB. The other part that has me concerned is my OB will only order the NT scan if the NIPT comes back high risk. But by the time I'll get my NIPT results, I think I'll be too far along for the NT scan. I thought I read you could only do that one through 13w3d? Not positive though.
  • cmbt2cmbt2
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    galentine said:
    @cmbt2, I did see there is a possibility of not having enough fetal DNA if you test too early, but the article I read said only about 5% of tests come back with no result due to not enough fetal cells. I don't know. I think I might be willing to risk needing a second draw so we can hopefully discuss the results with the OB. The other part that has me concerned is my OB will only order the NT scan if the NIPT comes back high risk. But by the time I'll get my NIPT results, I think I'll be too far along for the NT scan. I thought I read you could only do that one through 13w3d? Not positive though.
    It can go to 13w6, I think? For some reason, I think they give you those couple extra days. 

    I’m only spouting what I know. If you’re willing to risk inconclusive results, I say go for it. They should actually call you if you get a high risk result rather quickly. At least, it’s standard here to get that call ASAP. 
    BFP #1 3/07, EDD 11/12/07, MMC 5/7/07
    ~~~  ~~~  ~~~
    BFP #2 5/4/14, EDD 1/15/15, DS1 1/19/15
    BFP #3 8/19/16, EDD 4/30/17, DS2 4/25/17
    BFP #4 12/22/18, EDD 9/6/19 - CP 12/29/18
    BFP #5 1/18/19, EDD 10/3/19, It’s a Girl!
    ~~~  ~~~  ~~~
    High Risk Dx (6/14):  Homozygous MTHFR C677T, protein C & S deficiencies
    galentine
  • galentinegalentine
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    edited March 11
    @cmbt2, I appreciate you sharing what you know. I guess I'm just super nervous about getting the results in time. If it goes til 13w6d, that's still only gives 8 days after the blood draw or 6 business days to receive the results and schedule a scan, if necessary. This would be a much easier choice if my insurance just covered the scan too.

    Edited for clarity
  • @galentine I've been wondering the same thing. At my next appointment, I'll be 12 weeks, 3 days and was just going to do the Panorama blood test on that day. However, now I'm wondering if I should go in sooner. My doctor told me that starting at week 10 I could get it done. Maybe I'll wait until 11.5?
    Me: 34 DH: 49 Married October 2015
    TTC #1 since July 2018
    galentine
  • elle-0409 said:
    @galentine I've been wondering the same thing. At my next appointment, I'll be 12 weeks, 3 days and was just going to do the Panorama blood test on that day. However, now I'm wondering if I should go in sooner. My doctor told me that starting at week 10 I could get it done. Maybe I'll wait until 11.5?
    Yeah, my doctor said anytime after 10w, although the earlier you test, the more likely for inconclusive results. That being said, if the biggest risk is just having to get a 2nd draw, I might be ok with that.
  • @galentine I also just checked out the Natura website and they say that the Panorama can be performed as early as 9 weeks and that most results will be returned within 5-7 calendar days.
    I am scheduled for an NT scan because I'll be 35 when I deliver, so I might just wait until the 12 week mark for the blood draw. Or not. I have no idea. Decisions are hard. I need ice cream now.
    Me: 34 DH: 49 Married October 2015
    TTC #1 since July 2018
    galentinestephanie123456
  • cmbt2cmbt2
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    elle-0409 said:
    @galentine I also just checked out the Natura website and they say that the Panorama can be performed as early as 9 weeks and that most results will be returned within 5-7 calendar days.
    I am scheduled for an NT scan because I'll be 35 when I deliver, so I might just wait until the 12 week mark for the blood draw. Or not. I have no idea. Decisions are hard. I need ice cream now.
    Granted, this was 2 years ago, but I had my results exactly a week after they received my blood samples. Since I’m on the other side of the country, it took 2 days to get there (it was drawn on a Tuesday afternoon, received Thursday. Results were in the following Thursday when I woke up— this was back when they sent the results directly to you, though)
    BFP #1 3/07, EDD 11/12/07, MMC 5/7/07
    ~~~  ~~~  ~~~
    BFP #2 5/4/14, EDD 1/15/15, DS1 1/19/15
    BFP #3 8/19/16, EDD 4/30/17, DS2 4/25/17
    BFP #4 12/22/18, EDD 9/6/19 - CP 12/29/18
    BFP #5 1/18/19, EDD 10/3/19, It’s a Girl!
    ~~~  ~~~  ~~~
    High Risk Dx (6/14):  Homozygous MTHFR C677T, protein C & S deficiencies
    elle-0409galentine
  • @galentine I did my blood draw at 10w2d.  I asked what the chances were of having to do a 2nd draw and she said the same, 5%, so I did it.  If I need the NT scan I want plenty of time.  Plus I’m impatient 🤷🏻‍♀️ 
    galentine
  • @emily1052, looking forward to hearing your update when you get your test results! 
    emily1052
  • @nomangos23 and @PleaseSendPicklesNow, so many hugs to you both and thank you both for sharing your experiences. ❤

    This is probably a stupid question, but how do you push for a scan when the doctor says they won't order it without a high risk blood test? Do you just say you want it and that you're willing to pay out of pocket?
    PleaseSendPicklesNow
  • @nomangos23, I'm so so sorry you went through such a tragic loss. I don't think I knew the whole story behind your loss, but it means so much to hear you share it in the hopes of saving others from the heartbreak you went through. Lots of hugs to you. ❤❤❤
  • lisarenlisaren
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    edited March 11
    @nomangos23 I lost a son with also a huge cystic hydroma and he also did have trisomy 18. We noticed the hydroma on US but our bloodwork Later came back for trisomy 18. 

    Hugs to you. ❤️

    With my 2yr old I was able to have the blood drawn at 9.5 weeks. The same for this pregnancy. 
    I am not 100% sure which test it was, as I feel there were several options, I will have to look it up on the portal. 

    Eta- I looked on my portal and we had the Harmony test done. 




                                  
  • All these stories are so sad, but also make me so grateful for modern technology. 

    With our first, we did the NT scan and sequential blood draws, no NIPT. I assume we will do the same. 

    Our hospital system actually doesn’t even discuss NIPT as an option if you’re considered low risk. I wouldn’t even know it existed if it wasn’t for my last BMB. 
    Babysizer Cravings Pregnancy Tracker
  • Just here to lurk & echo - our scan is what showed us the cystic hygroma & hydrops. Granted - the NIPT showed trisomy 13 AFTER the NT scan, but it was made verrrrry clear to us that a whole host of issues can cause a cystic hygroma/enlarged NT that an NIPT doesn’t test for. 

    Andplusalso - timing does matter in the sense that if your NIPT shows a high risk for something but no real NT scan issues, you have to get a CVS before 13 weeks to confirm, otherwise you’re usually waiting til 15 weeks for an amnio. For us, hydrops made the decision for us without a CVS or amnio, but I got my NIPT drawn on 12wk5days and by the time my results came in, I’d be waiting even longer to get an amnio. 
    **tw loss in spoiler**


    married 11.1.14

    bfp 12.22.18 letrozole + progesterone

    d&e due to trisomy 13/hydrops/cystic hygroma @15wks

    galentineelle-0409
  • @nomangos23 and @PleaseSendPicklesNow I am so sorry for your losses, and I appreciate you sharing your experience with us here.  Its also nice to hear everyone else’s experiences with these tests.  

    There are so many!  My Dr did a blood draw for Myriad Counsyl test and then I have the NIPT and NT scheduled the end of the month at 12 w 3 days.  I think I am getting he works because I’m 35.  I am waiting to tell everyone until I get those results just to be on the safe side but 3 weeks is so far away!  
  • So interesting g to see the NT not automatically covered. Around here, it’s standard along with the first trimester screening. So I’ll be doing that again this time unless my OB suggests otherwise.
    TTC history in spoiler
    Me: 30 Him: 35
    Married: Oct 2015
    Baby G born June 2017
    TTC#2: July 2018
    BFP #2: 2/6/19 MC 3/14/19


  • I find this thread really interesting as I am
    AMA (soon to be 39). With my son, my physician recommended the NIPT and that was the only testing that we did and all turned out well.

    This time around, when I expected to go the same route, she advised me that there have been too many “surprises” at later weeks and no longer recommends solely a NIPT. She has scheduled me for a blood screen and NT scan and will only do the NIPT if moderate or high risk results come back. Personally, I want to have everything done for peace of mind. I have two more weeks until my Prenatest Plus and will feel a lot better once it’s done and the results come back. 
    PleaseSendPicklesNow
  • Just an FYI, the out of pocket cost for my NIPT (Panorama) is $650.  
    Luckily my insurance covers it but thought the info might be helpful for some of you. 
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