September 2019 Moms

NT/NIPT Discussion Thread

124

Re: NT/NIPT Discussion Thread

  • @lillywonderland I know you don’t spend very much time with your doctor during delivery anyways. Everyone keeps telling me that it’s the nurses that are the most important. But it’s still the idea of having some rando there that doesn’t know me and my situation. I am considered high risk. So who’s to say that they even read my chart.

    The smaller clinic that I like has a hospital attached so they do deliveries right there. If for some reason there was an emergency and they needed to transport me to a larger hospital I would most likely go to the one I’m thinking about leaving. They’re about 15-20 minutes apart.

    I haven’t thought too much about a doula or anything. One of my best friends is a labor and delivery nurse so I did think about asking her to be there. MH doesn’t really like her tho so he might veto it lol. MH is a first responder so he does know some medical terms. He’s pretty calm under pressure too.

    I’ve never heard of interviewing an OB. Would that be considered an appointment?

     

    @rms924 Thank you. That does help. They work for me, not the other way around.


    *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 ugh that is beyond unprofessional of them, I'm so sorry they put you through that (not to mention your request is so normal it's standard so many places) - what is up with that place!?! Glad you are looking at where to switch and hope you find somewhere you feel good about. I would hope the smaller clinic you're interested in could tell you how they're equipped to handle your medical needs, and give enough details on the hospital where they deliver so you can make the decision if they are right for you - I would ask under what circumstances they would transfer you to a different hospital and where you would go. My provider does the thing where you get whichever OB is on shift when you go into labor (and, if you're in more than 24 hours, you'll get handed off) - but they also mix up who you have appointments with toward the end so you'll have a shot at having met who delivers you before, which sounds different than your big clinic. It's for sure a little weird, though, and I think I'm more nervous about it this time than I was with DS (for the not really reading the chart reasons you mention). It sounds like you have some people who can be good advocates for you during labor (YH if he doesn't want your friend there). It's worth having that. There are a lot of people in and out during/after labor, and shift changes happen, and it's good to have someone there to make sure everyone does grasp what your medical concerns are. This isn't you being demanding at all, @rms924 is so right - these people work for you.
  • Loading the player...
  • Ugh, I got a call today that I have to redo my NIPT blood draw. I guess the lab didn't seal it correctly. I am just venting more than anything. What's another week in the grand scheme of things, I guess? 
  • Ugh @kgg2241 that’s so annoying. Hopefully it gets tested done quickly once you redo it. I’d be annoyed too. 
  • I had my NT ultrasound today and they "strongly advised" me against NIPT since I'm not high risk or AMA.  I was like, "what's the downside"?  And they said "it's not necessary"....ummm....thanks, I'd like all the information I can get.  Anyway, they don't do blood draws there (office is in a huge hospital...?) so I had to schedule the blood draw for Monday.  It's not at all a big deal, but I'm spoiled because I knew sex at 11 weeks last time.  I'm 12 today and will have to wait more than a week!  I just want to know now and know that all is well with the little lime.  Good news, though:  No fluid on the neck!  :)  Baby was a healthy-looking little wiggle worm!
  • @LJMoon6 True - the nurses ARE the most important during deliver (IMO). The Dr basically just “catches” and “stitches”. 😉 No, it wouldn’t be an appointment. When I called to interview my pediatrician I just said I was PG and looking at a few practices and wanted to sit down and have a chat with one of the doctors. They were super receptive and they were able to squeeze me in for like a 20 minute chat! Just call and tell them that - basically you would like to see the offices and talk to a NP / OB as you are a prospective client and wanted to meet them before you made a decision. 

    @kgg2241 boooo! I’m sorry you have to get it redone! 

    @mamaber2204 Yay for a good NT! 
  • Sorry for the super long post!

    @LJMoon6 I'm sorry that you've been put in a position where you feel you need to switch practices. That's not fair to you. I actually switched from a big practice to a much smaller one between my pregnancies for some of the reasons you cited. During my last pregnancy at the big practice I was not able to build a relationship with any one OB since I had to see all the DRs that deliver since there was no guarantee I would know who would be on call when the time came. When I was finally admitted I saw 3 of the doctors (my water broke but I had to be induced) and none of them remembered me. Most of my stay I was seen by nurses and residents. It felt so impersonal and I just didn't like it. 

    After my pregnancy I looked for a small practice that was also affiliated with the hospital I delivered at since they have a NICU and better ratings than the one closer to me. The practice I'm now at has been wonderful. Everyone from the nurses to the Physicians Assistants and the 3 OBs have taken the time to answer all of my questions. I think it's worth meeting a few practices to find one you feel comfortable with, especially since you already have some medical things that may affect your labor. You should only be charged for a consultation if at all. You can call your insurance to ask. 
  • **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

  • Our nipt came back normal and we are having a girl! Huge sigh of relief.  We did the MaterniT Genome which is the most extensive so it helps relieve some anxiety with my(38) and husbands (50) age.  There is a lot more concerns with a male over 50 that is outside of the trisomies. 
  • @nomangos23 we have an early anatomy scan this Thursday (at 16w) to check on everything.

    And @chichiphin fair point. I know there’s a huge difference between a 3.0 and higher numbers in terms of possible implications, and I wanted to share my story since I’ve found there are a lot of scary stories out there and it’s easy for people like me (with anxiety problems) to immediately jump to worst case scenarios.
    BabyFruit Ticker
  • @madamerwin Actually not true, my number (in my first pregnancy) was a 2.6 and things did not turn out okay. Hoping your babe is perfect. Good luck on Thursday. 
  • Hey ladies! I don’t participate on here as much as I’d like to, but our NIPT results came back and we are having a healthy baby girl!  I'm so excited to have 2 little girls though my husband would have loved to have a boy.  

    @LJMoon6 I switched providers halfway through my previous pregnancy.  I moved from a small practice that worked at a big teaching hospital to a larger one that worked with our smaller hospital.  I was able to meet all the midwives at the larger practice but had the benefits of a small hospital.  I was much happier with the nursing staff at the smaller hospital and even if I stayed at the small practice I wouldn't have been guaranteed my Doctor if they weren't on call at the time.  Even at the smaller hospital though I honestly don't remember much about which of the midwives were there at any given time but just remember the nurses as being the ones there throughout my labor.  
  • Super quick question.  I'm going for the nt and nipt today. Will I get photos to take home from the u/s?
  • @nightdreamr13 You absolutely should! Good luck today!
  • @kgg2241 yay! So glad everything came back negative and I cannot wait to hear what the sex is!
    *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


  • edited March 2019
    @kgg2241 I CAN’T WAIT TO HEAR IF YOU’RE HAVING A BOY OR GIRL!!! 💙💜 Are you doing a little cuppycake or something?

    eta - woohoo about the good results!! That’s more important than the sex parts, lol.
  • Haha thank you, @lillywonderland. I don't know yet! I am going to try to slide away from work to maybe get a balloon or cupcake. I'll see if I have time. 

  • Trigger warning: bad news 


    @chichiphin



    we had abnormal results at our 13 week US 
    genetic counselor said we might be looking at trisomy 13
    NIPT  came back “negative” tho I’ve learned it’s only 90% accurate. 
    Yesterday had 16 week US and  amneo. Results still abnormal and NOT good. 
    Baby has HPE and a single artery umbilical cord. 

    We don’t know how extensive the defects are. Can range from “so mild you may not even notice” to “very severe.”
    i really just want an answer. 
    Yes or no would be so much easier than “it depends...”
  • @moxyligeia so sorry to hear about your news. :( Are they able to do more testing to give you more of a definitive answer? Thinking of you. hugs!! 
  • @moxyligeia I am so sorry you are dealing with this and the uncertainty. Whatever the outcome, we are here for you. I'll be thinking of you and your family.  <3
  • Amneo results may be able to tell us WHY he has HPE. But won’t tell us how severe it is.
  • @moxyligeia oh my gosh. The unknown is awful! Will there be a point at which you will get some more information? I’m so sorry. I’ll be thinking about you so much. 
  • I’m so sorry @moxyligeia! I hope you can get some clear answers soon. I’ll be thinking of you!
    *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


  • @moxyligeia I am so sorry. The amneo will also look at T13 as well as confirm.

    Are you able to be seen by someone in a maternal fetal medicine group for an additional scan and consult? Perhaps an OB who works with a children’s hospital? We got the most in-depth answers and assessment after going to a specialist and not a regular OB group.
    **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

  • calliahcalliah member
    edited March 2019
    @moxyligeia I’m so sorry you got bad news. By 20 weeks or so they should be able to see more of the brain development to see if you are looking at alobar or any of the other kinds. Alobar is the most severe. Semilobar and lobar tend to have better prognosis and they really should be able to see that on ultrasound.They should ask be able to see if baby has any of the accompanying characteristics of HPE. 

    ETA: I hope you can get some more answers soon
  • @moxyligeia I just wanted to add that I am so sorry you are going through this uncertainty and I pray that you are able to get some clarity soon. Will be thinking of you! 
    TTM - EDD 4/23 - Team Green <3 
  • @moxyligeia I’m sorry I missed this news earlier. How are you doing? Do you have the amneo results yet?

    Remember, whatever you and YH decide to do (if anything) it’s the right choice for your family. Sending you lots of love and hugs!
  • swamplassswamplass member
    edited April 2019
    Just got a call from the doctor. Bloodwork from NIPT* (edit: not NIPT, sequential screen*) came back with increased risk of trisomy 18. They are recommending amniocentesis but apparently I'm near the end of the window for that (by 20 weeks, and I'm 17w4d now). I'm a little bit in shock, I've had quite a few ultrasounds as I was hospitalized for a bit (multiple sclerosis flare) with no red flags. NT was normal. DH and I are freaking out. I guess we are trying to schedule as many tests for tomorrow as possible (a Friday, of course) and then we have a 2 week wait. Deep breaths.

    * Edited because typos drive me crazy and because I had a sequential screen* that I "failed" (the NIPT is being drawn today and that's what we will be waiting for now... If that's positive for T18 then we meet with the MFM, have an ultrasound, and decide whether or not to do amniocentesis).
  • Thinking of you @phillyftm! Sending positive vibes your way!
  • @phillyftm I’m so sorry you’re in this crappy waiting game. I hope that everything turns out okay. Sending you lots of love, strength and hope! ❤️
  • @phillyftm thinking of you and hoping for a good outcome! I’m sorry you’re going through this uncertainty and stress.
    *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


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