NIPT,AMNIO &CVS Experiences and questions — The Bump
April 2020 Moms

NIPT,AMNIO &CVS Experiences and questions

Hey ladies! Have questions about any of these procedures ? Ask here! NIPT,AMNIO &CVS Experiences and questions
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Re: NIPT,AMNIO &CVS Experiences and questions

  • Thanks for starting this thread @cicchettimama00 would this also include NT? 
  • @sanpelligrino I think NT fits in the same category. 

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    Me 34 DH 34 
    PCOS

    DS1 born September 2017
    Baby number 2 due 4/11/20
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  • I am pregnant with number 3.  My last pregnancy was 6 yrs ago and we didn’t get a NIPT.  My first US and bloodwork will be when I am 8.5 weeks.  Do they normally do it at that appt?  Did they call you with results or do you pick it up from your dr?

    Thank you!
    BabyFetus Ticker
  • mercury94mercury94
    500 Love Its 1000 Comments Third Anniversary Name Dropper
    member
    edited August 30
    @JenniferW24 My experience last time was a little weird. I had the blood draw at 14 weeks after an abnormal NT scan. Got my results about a week later by phone call. I know some docs will load the results on the patient portal, but usually after the phone call. Most women I know have done the NIPT blood draw at the 12 week appointment with the NT scan.

    I’m debating whether to do it this time as my insurance still doesn’t cover it (I’m 34 and will be when baby’s born, they cover for 35 and up). I expect to get an abnormal NT scan again as my hormone levels are super weird due to PCOS and that seems to be what caused the result last time. Insurance will cover after the abnormal result, but getting that phone call and waiting for NIPT results was agony. Still discussing with DH as the OB quoted $650 as the out of pocket cost for the NIPT and that a bit more than I want to pay. I feel like I could negotiate with the lab and get a better price. 

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Me 34 DH 34 
    PCOS

    DS1 born September 2017
    Baby number 2 due 4/11/20
  • Thank you for sharing info and your experience.  I hope you can negotiate pricing so you don’t have to pay that much!  I’m 36 right now, but haven’t looked into it my insurance will cover it.  I’m sure we’ll find out more about it at my first u/s and bloodwork appt the end of next month.  
    BabyFetus Ticker
  • Odd story, but I wanted to get the NIPT last time, and even found an article on my ins company's (Anthem BCBS) website saying it was covered for all women, regardless of age or lack of "abnormal" test. So I called to see which brands would be covered, and the woman told me NIPT wasn't covered, and she would know because she was pregnant too. But I had the company memo saying it was! By the time I worked everything out, the window to take the test was over. Very frustrating.
  • oldforthis4oldforthis4
    First Comment Photogenic
    member
    edited September 2
    I’m older (43) so I will be getting NIPT. This is new to me, my last pregnancy was in 2009! My insurance said they would send me a “bulletin” to help my OB office to code the test so I won’t have to pay out of pocket. Either way, I will pay if I have to. I will be a great parent to a child with special needs- I already am, I have 2 kids with autism. I would just like to be prepared. Also, one of my prior miscarriages has trisomy 18, so having the test will reduce my stress. 

    My my question is, if you get the test at 10 weeks, how long does it take for results? What format do they come in? Can someone post an example of they results? Thanks!
  • babybison I had the test done at 23 weeks last time with DS after a soft marker was found on his anatomy scan. You really can have it done whenever in pregnancy, most labs want you to do it between 10-14 so that you have time to make a decision. When I got my test done, the NP at my MFM told me you can have it done up until the day you give birth. 
    oldforthis4 I think most labs say results will be back within 10 business days. Usually they are faxed or emailed into the office and your provider can call you with results. I used Integrated Genetics last time and I was able to call their customer service to find out where in the process my lab was so that I could call my doctor's office instead of waiting on them to get around to call me. My labs were never uploaded to my patient portal at my OB, but at that time I was also seeing a MFM so I'm sure they didn't cross over. 


  • I'd like to ask about the NT scan. It was never offered to me with DS and I was 27 when he was born. I did opt out of all genetic screening until our anatomy scan. This time, I plan to do the NIPT testing ASAP, and I know some people highly recommend the two combined. I will speak to my OB about it at my 9w appointment, but if it's not an option is that something I need to be concerned about? I would like to have as much information about the baby as I can upfront before approaching the 20 week mark and having a repeat of the issues we had last time. 


  • @flinstone-2 My OB refers to the MFM and they do the the NT and blood draw for the NIPT at the same time.  My Counsyl results actually have the NT scan info on them.  I asked her about it and she said that they recommend the NT in addition to NIPT since is can show physical markers.   

    @oldforthis4 We used Counsyl (which I think is called Myriad now) and the results are ready in a week.  They gave us a log in which would update us on the progress of the test.  Once our MFM reviewed the results they released them on the Counsyl website.  They also had a separate section to see the sex if you chose to.  
  • @flinstone-2 I was planning to skip the NT scan after my horrible experience last time. But, @chichiphin posted some information about her experience on the First Tri board a while back that really changed my mind. I think she also posted it in March. It was good insight to have. I’m still undecided on the NIPT this round because of the cost, but I’m scared of getting the bad NT again and that awful week waiting for results. 

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    Me 34 DH 34 
    PCOS

    DS1 born September 2017
    Baby number 2 due 4/11/20
    stassischroeder
  • 8w3d today, and I have a prenatal phone appointment today before they set up my in-person visit next week. I'm going to ask them about the NIPT and NT. Ideally, I would like to do both the same week. Since I'm not 35, I do hope this is covered by insurance, and if not, hope it doesn't cost me a bomb. 

    I would like to get this done at week 11. Let's see what they tell me today. I also plan on inquiring with my OB next week.
  • mercury94 I have read her recount before of the NT/NIPT and that's what has moved me to consider the NT if it's even an option to me. I really pushed all of it out of my mind with DS because I knew some people who had received a false positive on their first trimester screens and I wanted to avoid that. This time, I feel like I know too much about what else is out there that I'm not willing to wait until 20 weeks to figure it out. 

    I have seen harmony boxes in the lab at my OBs office so I am guessing that is the test they use. If my OB will let me proceed with the NIPT I will get it from her. I remember the info sheet in my confirmation appointment paperwork last time, but never did it through them. I'm going to ask all the questions next week because I want to take the best course of action that will cause the least anxiety.. 
    mercury94chichiphin
  • When does everyone plan on getting the NIPT done if you're doing it? I know it can be done as early as 10 weeks, but is it worth waiting? I've read fetal fraction only increases about .1% from weeks 10-20, so it doesn't make too much of a difference. My fetal fraction at 23 weeks was over 27% with DS lol
  • @flinstone-2 If I do the NIPT, it will be at my 12 week appointment when they do the NT scan. 

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    Me 34 DH 34 
    PCOS

    DS1 born September 2017
    Baby number 2 due 4/11/20
  • @flinstone-2 I want to get it done at 11 weeks. Our plan was to do the tests, and announce the pregnancy after that. 
  • @flinstone-2 I want to get it done at 11 weeks. Our plan was to do the tests, and announce the pregnancy after that. 
    This is my plan too , I’m doing it right after 10 weeks. 
  • By the time I had DS my provincial medicare was covering NIPT (it didn't 2 years previous for my best friend) so since it was covered and was basically just an extra vial of blood I went ahead and got it done, just so that I could be prepared if he did have something. Turns out I have young eggs because everything came back with the same chances of him having it as if I had been pregnant as a teenager (I was 30). I'll probably get it done anyways if it's still covered, again just to be prepared in case, although I expect the results to be similar.
    Married November 19, 2010
    BFP April 18, 2014 (EDD December 2014) - MMC
    BFP #2 January 2015 - NMC
    BFP #3 October 2017 - F born June 13, 2018
    BFP #4 July 2019 - NMC
    BFP #5 August 2019 - EDD April 2020


  • **tw loss in spoiler**


    married 11.1.14

    ttc #1 since 5.18

    bfp 12.22.18 letrozole + progesterone

    d&e due to trisomy 13/hydrops at 15wks

    bfp 7.21.19 letrozole + IUI 

    little girl coming 4.1.2020  <3

    mercury94
  • jd614 sanpelligrino  that would be my plan too. I'm hoping my doctor will let me do it the Friday before DS birthday which would put me at 10+3 I'd like to announce if the results are good right away. It's hard hiding this blump and the m/s and I'm only week 8!
    sanpelligrino
  • jd614 sanpelligrino  that would be my plan too. I'm hoping my doctor will let me do it the Friday before DS birthday which would put me at 10+3 I'd like to announce if the results are good right away. It's hard hiding this blump and the m/s and I'm only week 8!
    yup i feel you! my appt is september 16th and my dr said results take 7 days, so ill have them the following monday. Feels like a lifetime away!
  • *lurking from March*

    General NIPT PSA: ( @mercury94 tagging you because I saw you mention cost) Please don't assume that you'll pay thousands out of pocket if your insurance doesn't cover NIPT. Make sure to call the testing company (Harmony, Counsyl, Invitae, etc) to see what your actual OOP cost would be if you don't go through insurance or if insurance won't cover. Most of the time they give a discounted rate of $100-350. They also often offer payment plans. Good luck and I hope this was helpful!


    *Formerly LuND*
    Me: 35 | DH: 37
    TTC: 7/2016
    Low AMH, mild MFI
    BFP 7/29/17
    EDD: 4/5/18
    <3  DS born 4/4/18  <3
    BFP #2 7/2/19
    EDD 3/13/20


    KFrobbabyrummom
  • KFrobKFrob
    Long-Lasting Membership 1000 Comments 500 Love Its Name Dropper
    member
    edited September 5
    Also, you might fit within the salary/# of children guide lines to pay nothing out of pocket

    Edit to add link https://myriadwomenshealth.com/patient/myriad-access-program/prenatal/
  • @stassischroeder Totally. My OB quoted me $650, but I’m going to get the lab details from her at my next appointment and see if I can get a better price for OOP. I did MaterniT21 last time, but I don’t know what the OB uses now, so I want to call the correct lab. 

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Me 34 DH 34 
    PCOS

    DS1 born September 2017
    Baby number 2 due 4/11/20
    stassischroeder
  • @stassischroeder so would the first step be to ask the OB if NIPT is covered, and what testing company they use and then go from there if they say it isnt covered? 
  • chichiphinchichiphin
    1000 Comments 500 Love Its Fourth Anniversary Name Dropper
    member
    edited September 5
    @sanpelligrino you can call the testing company with your insurance info and they'll tell you, but usually it is NOT covered if: you are under 35, no history of abnormalities in siblings or in prior pregnancies, and twin pregnancy. 

    **edit to add - it usually does become covered if NT U/S shows a marker for something or if other blood work shows an increased risk (NT bloodwork). 
    **tw loss in spoiler**


    married 11.1.14

    ttc #1 since 5.18

    bfp 12.22.18 letrozole + progesterone

    d&e due to trisomy 13/hydrops at 15wks

    bfp 7.21.19 letrozole + IUI 

    little girl coming 4.1.2020  <3

    sanpelligrinostassischroeder
  • OK, makes sense! thank you @chichiphin
  • @sanpelligrino what @chichiphin said. Unfortunately OBs will generally have zero idea if your insurance will cover it, and they usually don't understand the test very well either (according to my genetic counselor). You can talk to your insurance company to get coverage information, but then also definitely talk to the testing company directly. 

    @mercury94 yeah $650 sounds high, so I concur with your plan to talk to the lab directly!


    *Formerly LuND*
    Me: 35 | DH: 37
    TTC: 7/2016
    Low AMH, mild MFI
    BFP 7/29/17
    EDD: 4/5/18
    <3  DS born 4/4/18  <3
    BFP #2 7/2/19
    EDD 3/13/20


  • Just putting this out there... my OB recommended jscreen.org (you don't have to be Jewish). It's carrier testing for 200+ genetic diseases (same as Counsyl) but their org has grant funding so it only costs $150. They provided this info after advising me that Counsyl was not covered by my insurance and would cost about $300. 

    We're still deciding whether or not we want to get any genetic/prenatal testing other than what might be indicated on bloodwork or ultrasound during the normal course of monitoring the pregnancy. We don't have any strong risk factors, and I worry that if I find out we're carriers for something I will spend my pregnancy in a state of panic, anxiety and hyper-researching mode. 
    stassischroederareseejenabary
  • DH and I spoke to a genetic counselor and have decided to go with the NIPT test. In California, you either get the california prenatal screening which includes the 1st TRI screening for a couple of chromosomal syndromes +NT ultrasound in the first tri + 2nd TRI screening OR the NIPT + 2nd TRI screening. We opted for the NIPT since it is more accurate than the other screening test, however we will not be offered the NT ultrasound due to this. They told me NIPT was covered by insurance despite me being 34.  

  • We’ve opted to just do the NT scan for now and do the NIPT only if we get abnormal results (like we did last time). I want to check the fold measurement. My OB suggested that she wouldn’t give me the option to do the NIPT out of pocket unless I skipped the NT. I’m okay with this path. I feel like I am in a better place emotionally now and I understand how the test works better, so I’m hoping that I can keep calm if I get the abnormal results again based on the bloodwork. I know that’s where the abnormality was last time and I know DS was ultimately just fine. Plus, I’ve always liked the idea of learning the sex during the anatomy scan instead of in a phone call from the OB and I wouldn’t have the patience to wait if I knew it was in my OB’s files. 

    ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

    Me 34 DH 34 
    PCOS

    DS1 born September 2017
    Baby number 2 due 4/11/20
    sanpelligrino
  • I'm planning on getting NIPT testing. I go in on Thursday for the blood work at 10w4d and should hopefully get the results in about a week. My OB said that my out of pocket cost will be $99 since I knew my insurance wouldn't cover me. She said there's a lot of competition right now between the companies that provide the testing and they are always willing to work with people when insurance won't cover it.







    sanpelligrino
  • @littleredm that's our plan as well. Do you also plan to get the NT ultrasound?
  • @mercury94 I'm faced with a dilemma because my OB offers either the 1st tri prenatal blood screening (less accurate compared to NIPT which is why it's offered to mamas < 35 ) plus the NT test. If you opt for the NIPT instead, you get just that and not the NT. DH and i discussed it with the genetic counselor and decided to go the NIPT route, but i'm confused because I know the NT is useful as well.......
    There is no way i can get both, that's out of question in my clinic.
  • Because of all our past issues we are pretty much getting all the tests and our doc will fight insurance if needed.
    Already got the extended carrier screening. Just had my bloodwork for the CVS, have that scheduled for Oct. 2...we have our 2nd US on Sept 26th and will probably have 2 more during 2nd tri since additional fluid is a sign for some issues on our end.
    Really just need a good CVS clear of all the things before I can feel 'safe-ish' 
    TW: 
    1 infant loss
    8/17: Our daughter was born
    8/18: Our daughter kicked open heart surgery ass
    2/19: We lost our son to Prader-Willi/Paradoxical Vocal Cord/ Noonans at 6wks old 
    4/26/2020: EDD for baby #3!!!
    sanpelligrinomercury94
  • I am doing my bloodwork for the NIPT testing this week.  It’s not covered in Canada unless you’re 40+, or your NT/Anatomy scan come back with a red flag.  We are doing the Panorama and it will cost us $795 + tax.  We didn’t do it with our first, but I’ve had a handful of friends have to do it after a red flag, and we just don’t want to go through that anxiety.  I struggled with severe anxiety my first pregnancy, so hoping this is helpful. We also don’t want to know the sex, so this test isn’t an early advantage to us in that sense.  At the end of the day, we’ve spent more money on much more careless things in our life 🤪
    sanpelligrinomercury94
  • @sanpelligrino I don't think we're going to get the NT. I'm getting an ultrasound at 12 weeks anyways and I figured that the NIPT is more accurate testing. And then of course we'll only get further testing if anything comes back as a likely chance.







    sanpelligrino
  • @littleredm honestly i'm a little relieved after reading your reply. This is what they want us doing and i was just worried cos a lot of ladies do the NT and we aren't able to get that done. But you're right the NIPT is pretty accurate and should be good. 
  • littleredm @sanpelligrino my OB's office does not offer anything outside of the NIPT if you want any screening in the first trimester. I was kind of surprised to hear this and I'm not sure if that's a new-er policy because I opted out of all screenings with DS until 20 weeks when we found a soft marker on his anatomy scan which prompted us to get the NIPT at that time. My OB and her nurse wanted me to be a little passed 10w to get the blood draw so I should be right at 11 when I have it done. 

    I can't decide what is better at this point. Getting early genetic screening is stressing me out, but finding out about a potential chromosome abnormality due to a soft marker at 20 weeks was devastating at that time. I think early knowledge would be better, but I feel like I can't breathe until it's over!
    mercury94ohemgee-2sanpelligrino
  • I'll be getting the NT, but we are actually having a very specific version done through prenatal genetics that I have been told is as detailed as an anatomy scan. I'm not sure of the specifics beyond that. There is only one hospital in our city that does it and the scan is still in trial phase. I am a carrier for a genetic abnormality, but the blood tests are not advanced enough to pick it up so we have to rely on ultrasounds for now.

    I've been through very extensive genetic testing and have had an amnio in the past. If anyone has any questions let me know!

    sanpelligrino
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