September 2019 Moms

NT/NIPT Discussion Thread

135

Re: NT/NIPT Discussion Thread

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  • septoctkidsseptoctkids member
    edited March 2019
    @JuneBaby1984 I personally did not decline the testing but I have a friend who did. It’s all personal preference on what you would like to know ahead of time. Yes, there’s a chance of false positives but that is so so rare. We were hesistent to do it, but our doctor explained that it is better to know ahead of time if there is something wrong because it could impact labor/ delivery decisions, and what needs to be done when the baby arrives. This way doctors are aware ahead of time, and you and the team of doctors have a plan in place if something was wrong. It can also help you plan for the future. 
  • @MsBeachNJ congrats!! My appt is in 2 wks and I keep saying once we see that everything is ok, I can relax.

    @moxyligeia yayy! So happy to hear!! Good luck with the amnio!
  • Ladies, help me. My OB is refusing to order the NT scan because we are electing to pay out of pocket for the more in-depth NIPT (Harmony) test. She is saying that “the American College of obstetrics and gynecology does not recommend performing both test.” The NT scan is 100% covered by my insurance and I’ve told her this twice. I seriously don’t get it. All she has to do is place the order. We could choose to do a less in-depth blood screen that involves 2 blood draws, one between 11 and 14 weeks and the second between 16 and 20 weeks, and then get the NT scan at 12 weeks, but I feel like we are compromising at that point. That test isn’t as accurate and we don’t get the final results until nearly 20 weeks. Am I putting too much emphasis on the NT scan and should I just trust that the NIPT (Harmony) test results caught everything? Or should I go with the less accurate BW just so that I can also get the NT scan? Help!


    *TW* TTC history
    Me:32 DH:31
    Married: 8/2015

    TTC #1: 4/2017
    Testing: HSG, U/S, BW, and DH's SA all normal
    DX: Unexplained
    8/2018: Clomid + TI = BFN
    9/2018: Clomid + TI + Progesterone = BFN
    11/2018: Clomid + IUI + Progesterone = BFN
    12/2018: Letrozole + IUI + Progesterone \\ Cancelled due to cyst
    1/2019: Letrozole + IUI + Progesterone = BFP! \\ EDD Sept 30th, 2019
    10/7/2019: Healthy baby boy!

    TTC #2: 12/2020
    2/2021: Letrozole + TI = BFN
    3/2021: Letrozole + TI = BFN
    4/2021: Surprise! Natural BFP! \\ EDD Jan 6th, 2022 \\ Chemical, betas not rising
    8/2021: Letrozole + IUI + Progesterone = BFN
    9/2021: Letrozole + IUI + Progesterone = BFN
    10/2021: Letrozole + IUI + Progesterone = BFN
    11/2021: Letrozole + IUI + Progesterone = BFP! \\ EDD July 29th, 2022

  • @LJMoon6 We do the second thing - the 2 blood draws and NT US, but that’s pretty much just because that’s what I did for DS (the technology for the NIPT wasn’t readily available when I was PG with him). Can you call your insurance and ask them for a referral or exception because your OB won’t order it? 
  • @LJMoon6 the NIPT I had wasn't the harmony, and I've no idea what the overall guidelines are on combining that and the NT scan, but I'm under the impression the NIPT in general doesn't check for a few things like neural tube defects and have been assuming that's why my provider still recommended doing the other screenings as well. This time they recommended doing the NIPT, the NT scan and the second trimester blood draw. Last time (I wasn't AMA) we did the two blood draws and the NT scan, since that's what was offered. It's so weird to me how much providers vary on this stuff! And since your insurance covers the NT scan it seems so odd your OB is refusing to schedule you. It sucks you're having to wrangle with this, and I hope you can get what you want done!
  • @LJMoon6 when is your next regular US? Honestly, in my first pregnancy, my OB didn't even "order" a special NT scan. I just had my regular 12 week US (which is part of her routine visits) and the sono tech took a measurement of the neck. I'm not super familiar with the harmony test but I know monitoring the actual baby is 100% more effective than the 5 or 6 things those blood tests pick up. If fact, because we've already had an unfortunate event occur, I'm seeing the MFM for my NT scan before we even discuss what blood panels we'll run. 
  • @LJMoon6 I'm pretty much in the same boat as you.  My OB is refusing to order the NT scan since I had the NIPT drawn.  They said my next ultrasound wouldn't be until the 20 week anatomy scan.  It's my understanding that the second trimester bloodwork will screen for neural tube defects.  My next appointment is on the 27th and I'll be 14+3.  I'm going to insist she do a quick ultrasound just to check everything.  My first ultrasound was done at 6weeks 6 days at the RE's office so there wasn't much to see.  I just don't think I can wait until 20 weeks to see the baby.   
  • @LJMoon6 she won’t write the order even tho you’ve told her to do it? I’d steal nomangos advice from Octs NIPT discussion board. Say you know women who have had things found on NT that the test doesn’t cover and you’d like the peace of mind. Also - NIPT is a likelihood. I’ve been told by two very renowned geneticists that a cystic hygroma or other NT enlargements can have nothing to do with a low likelihood result on an NIPT. 
     
    Is this a single OB practice? if not - perhaps probe on if any other OBs would recommend it?
    **tw**


    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 A born 3.26.20

  • @moxyligeia That's good news!!!

    @JuneBaby1984 It is completely optional. We probably wouldn't have done it but DH is adopted and we know nothing about his birth father.
  • septoctkidsseptoctkids member
    edited March 2019
    @littlemiss84 mine still says payment pending and I got my results back already. Once my blood work was received, my doctor had my results the next day. You can call Natera to ask if they have sent the results over to your OB. 
  • @LJMoon6 that makes zero sense to me. I saw a genetic counselor yesterday (required) before my NT scan which was done at the perinatologist’s at our University.  He confirmed that while yes, it checks for a nasal bone and my NIPT results already told us we were very low risk for D/S or any trisomy, it also measures for heart and brain abnormalities. It screens for some things that are wholly different than the NIPT. My midwives didn’t question my ask to both at all. 
  • @LJMoon6 Ditto exactly what @justhereforthemusic said, that was my same experience. With that said this article is pretty helpful and outlines the recommendations your doctor might have been referring to: https://www.contemporaryobgyn.net/obstetrics/smfm-consult-ultrasound-cfdna-era

    I still think if you as the patient should decide what you do and don't want once you've been well educated by your doctor. If you're not getting a good vibe from your current OB, I would change providers. The first midwife I saw during my pregnancy ordered a bilateral mammogram for me with little explanation. I never went back and am so thankful and happy with my new OB. 
  • I'm curious. Is there anything the NT scan catches that the anatomy scan doesn't? Or is it just finding out sooner? 
  • @janat1717 @lillywonderland also, I don’t think this is the scan where you can detect spina bifida. Pls correct me if I am wrong ! I thought my u/s person said that. 
    Me: 34 DH:38
    DS: 18 months   <3
    Dx DOR AMH .2
    <a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Pregnancy"><img 
  • No spina bifida at this stage. @lillywonderland is spot on with her explanation 
    **tw**


    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 A born 3.26.20

  • @chichiphin I think of you and your family often. <3 So nice to see your name pop up this morning. How are you doing?
  • @LJMoon6 I'm so happy to hear you didn't give in and you got the testing you deserved!! 

    @chichiphin you have been on my mind & in my prayers. I am glad to hear that you got a clear diagnosis and can move forward with a plan you're comfortable with based upon the findings. Sending love <3 
    TTM - EDD 4/23 - Team Green <3 
  • @LJMoon6 SO glad you found a great OB! They definitely sound better than the other one! 

    @chichiphin you've been on my mind so much lately. I am sending you so much love.
    *TW*
    Me: 32 │ DH: 35 
    Married 8/16/13
    BFP#1 DS 11/13/16
    BFP# 2 MMC dx @ 13w 10/30/18
    BFP# 3 Preemie DD born at 38w (IUGR) on 8/28/19 weighing 5.5lbs. Our little miracle  <3


  • @chichiphin You have been on my mind too. 💜
  • @nomangos23 So incredibly thrilled for you, friend!!! Don’t mind me - just crying some tears of joy over here for you!! 😭😁
  • @chichiphin so glad to see your name pop up. I am glad you are pursuing all the testing you can and just sending you and dh huge hugs during this time. 
    Me: 34 DH:38
    DS: 18 months   <3
    Dx DOR AMH .2
    <a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Pregnancy"><img 
  • @nomangos23 I'm so glad to see this update!!! Wonderful news, so happy for you!

    TTM - EDD 4/23 - Team Green <3 
  • @nomangos23 I breezed by and totally missed your update! YAHOOO! I'm SOOO thrilled for you!!
  • The nurse was able to squeeze me in today with an NP so that I could finally sign the paperwork for the Harmony NIPT. And got the draw done this afternoon. While I was there tho the nurse and the NP I saw made some comments about me being unhappy with my current OB (clearly having read my messages to her). They were actually able to get me in with the other OB that I wanted. Some of the comments tho left me with the feeling that everyone in the office was talking about me and the fit I threw about wanting the NT scan... I just feel embarrassed to even be there now.
    *TW* TTC history
    Me:32 DH:31
    Married: 8/2015

    TTC #1: 4/2017
    Testing: HSG, U/S, BW, and DH's SA all normal
    DX: Unexplained
    8/2018: Clomid + TI = BFN
    9/2018: Clomid + TI + Progesterone = BFN
    11/2018: Clomid + IUI + Progesterone = BFN
    12/2018: Letrozole + IUI + Progesterone \\ Cancelled due to cyst
    1/2019: Letrozole + IUI + Progesterone = BFP! \\ EDD Sept 30th, 2019
    10/7/2019: Healthy baby boy!

    TTC #2: 12/2020
    2/2021: Letrozole + TI = BFN
    3/2021: Letrozole + TI = BFN
    4/2021: Surprise! Natural BFP! \\ EDD Jan 6th, 2022 \\ Chemical, betas not rising
    8/2021: Letrozole + IUI + Progesterone = BFN
    9/2021: Letrozole + IUI + Progesterone = BFN
    10/2021: Letrozole + IUI + Progesterone = BFN
    11/2021: Letrozole + IUI + Progesterone = BFP! \\ EDD July 29th, 2022

  • @LJMoon6 I doubt it but if so, WTFC! you have to do what is right for you. 
  • @LJMoon6 that makes me furious for you. I would be very upset if I thought my ob's office was gossiping about me. That is so inappropriate. Like dahlias said, you need to look out for you. I'm sorry they made you feel like that. 
  • @LJMoon6 You need to feel comfortable there. Do you have any friends/coworkers who you can ask for a reccomendation of a new OB? I had to switch OBs during my first PG and it wasn’t too difficult - especially if you can do it before the anatomy scan!
  • @LJMoon6 ugh, I'm sorry they gave you that impression, that sucks. If they were all talking about it, it's possible they were thinking your current OB was being obdurate about it rather than thinking you were throwing a fit; but anyway, what matters is you did what you needed to for you! I'm so glad you're seeing the other OB - is that appointment fairly soon? I hope that goes really well, that you like your new OB, feel comfortable, and don't get any more weirdness from the office.

  • @LJMoon6 good for you for persisting and getting the care you need. It can't be said enough: Doctors need to listen to their patients. So glad you were able to speak with a different OB. 👊👏
  • @LJMoon6 I'm sorry for the way the office made you feel, but it's not like you were demanding something unreasonable!  The NT scan is standard practice at so many other places!!  If an OB office's staff can't understand a pregnant lady being anxious and wanting available tests run for peace of mind, they're in the wrong field. I'm glad you advocated for yourself and hope you like the new OB!
  • amomhamomh member
    Took my test Tuesday. Just waiting now.
  • @dahliasanddogs At first I thought it was nice that they knew my situation and had prepared for their patient (too often doctors don’t look at patients charts before seeing them). But then they said a few other things that made me uncomfortable and even MH noticed and said the same thing when we walked out. They were definitely talking about me.

    @kgg2241 Thanks. Having worked in a clinic before, I know how often it happens. And those “trouble” patient’s names stick with you. I just hate this feeling. I’m not a big enough person to just not give a F.

    @lillywonderland I have a couple different offices I’m looking into now. I’m leaning more towards one than the other. I would prefer to go to the smaller clinic, it feels more personable. And they do group appointments which I think would be cool. But I’m worried that with my medical history they won’t be able to handle me (I have scoliosis and chiari malformation). I’m worried that the anesthesiologist won’t have enough experience placing an epidural in a crooked spine. Or that my chiari malformation will cause some issues in the middle of delivery and they won’t know what to do. My current clinic is affiliated with one of the biggest hospital in the state and that’s where I would be delivering. But they have a group of 20 or more doctors from all over the metro that deliver at that hospital. They rotate and always have 4 of them working at all times. They make no effort to call in your own OB for your delivery, it’s just whoever’s working for that day. I don’t know if this is common but it feels really weird to me. At the smaller office they make an effort to get your own OB for your delivery which I like. Idk, maybe I just need to meet with someone at the new clinic and/or take a tour of the place. Maybe it will help me feel more comfortable.

    @ternsetc Oh they were definitely talking smack about me. They made it clear that my request is abnormal and weird. They tried to blow it off like it’s no big deal but the damage was already done. I’ll go in next week to see the new OB. I guess I’ll see how I feel then. Maybe all this will have blown over by then but who knows.

    @phillyftm Thanks. Some doctors are really good at listening to their patients but others are terrible. I guess I found a terrible one…

    @RedBreast35 Thank you for those words. That really helped. I was starting to feel embarrassed that I even asked for the scan. They totally made me feel like an idiot and that I was being unreasonable. I’m going to screenshot your comment so that I can read them over and over again before my next appointment. I need the words of encouragement and to feel confident going in. Thank you!


    *TW* TTC history
    Me:32 DH:31
    Married: 8/2015

    TTC #1: 4/2017
    Testing: HSG, U/S, BW, and DH's SA all normal
    DX: Unexplained
    8/2018: Clomid + TI = BFN
    9/2018: Clomid + TI + Progesterone = BFN
    11/2018: Clomid + IUI + Progesterone = BFN
    12/2018: Letrozole + IUI + Progesterone \\ Cancelled due to cyst
    1/2019: Letrozole + IUI + Progesterone = BFP! \\ EDD Sept 30th, 2019
    10/7/2019: Healthy baby boy!

    TTC #2: 12/2020
    2/2021: Letrozole + TI = BFN
    3/2021: Letrozole + TI = BFN
    4/2021: Surprise! Natural BFP! \\ EDD Jan 6th, 2022 \\ Chemical, betas not rising
    8/2021: Letrozole + IUI + Progesterone = BFN
    9/2021: Letrozole + IUI + Progesterone = BFN
    10/2021: Letrozole + IUI + Progesterone = BFN
    11/2021: Letrozole + IUI + Progesterone = BFP! \\ EDD July 29th, 2022

  • @LJMoon6 I think it depends on the OB practice, but some have doctors that will 100% be there for your delivery and the other ones it’s a crapshoot if you will have even met them beforehand (Kaiser out here is like that - they prolly have like 30-40 OBs per delivery hospital). TBH, I thought I was going to get one of the 3 OBs at the practice during DS’s PG (and that’s what they told me) but it turned out that I had some random Dr for delivery. It didn’t matter in the end because at that point you just want baby out and healthy. 

    Are there any other practices that are affiliated with the big hospital? Are you considered high risk already? The smaller clinic that you think you might like - do they deliver at the big hospital? Have you thought about getting a midwife/doula/rn to help you advocate during your labor - not so much for the pain/whatever but more for the medical stuff? Do you think YH will be able to do that? I mean, I know the doctors are supposed to read you charts and stuff but it might help to have someone well versed in medical terminology/speak to be able to explain what you need while in labor.

    I would go and interview the new OBs/practices that you are thinking of switching to. It’s a pretty common practice and they should be receptive of it. I interviewed our pediatrician when I was PH and got such a great vibe from them (and it turns out they indeed are awesome). 
  • @LJMoon6 I am also like that- I care and I never want to be annoying or trouble. At the same time, it's not like they are doing you a favor- you are paying for a service. It's like being at a restaurant and your waiter saying you didn't need an appetizer. Umm, no. I think we forget that our care providers work for us. You don't certainly seem like the type of person that was rude about the request. Just switch, if they are going to be like that. It's SO unprofessional, btw.

    Hugs :) You aren't crazy for feeling the way that you do. Sometimes, I just need to hear that, so I hope it helps you too!
    Me: 34 DH:38
    DS: 18 months   <3
    Dx DOR AMH .2
    <a href="http://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Pregnancy"><img 
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