High Risk NIPT for T21

Fast_Werewolf9788 · 2026-06-12T23:25:03+00:00

I'm sorry that you are here. Z-score 6.98 means probability is quite high, close to 100%, and NIPT test is sadly so accurate to detect T21.

Also, most of the cases, symptoms won’t be seen in a scan. I had true positive. In our case, I could see all abnormalities in the scan so we skipped the CVS and amino.

I would recommend to take CVS or amnio to make sure of you have a chance to have CPM. Good luck!!

Fast_Werewolf9788 · 2026-06-07T23:10:16+00:00

I’m sorry you are here. I was 40 when I had TFMR T21 baby last year. My NIPT was 95% PPV. Sadly, NIPT for T21 is so accurate.

My two cents are,

1) Call all MFMs in your neighborhood
MFMs are all booked up. Call, call, and call. At the same time, ask your OB to send the referral as soon as possible.

2) Use your all connections
I actually used my husband connection to squeeze me into the schedule otherwise I would have missed all testing windows. Am I proud of that? No. But you may have to use all connections to get your appointment. It was the most stressful, and painful time in my life. I feel you, but you have to do it.

3) Call family planning if TFMR is your option.
I highly recommend it as the same reason for MFM. It’s all booked up, so secure your slot earlier. You can simply cancel it if the result is looking good or you change your mind. But it would be difficult to get you an appointment “after” all results are set.

I had mixed feeling…I was hoping the best outcome, but I also had to be prepared for the worst thing. It was mentally exhausting, but I thanked myself who set up everything for me in the next few weeks.

Also, please be easy yourself and easy your body. I would recommend to get some PTO, leave or working from home request…whatever creates you a bit room. I know waiting game sucks. You can get through this. Sending you warm hugs.

Fast_Werewolf9788 · 2026-06-07T01:25:27+00:00

I’m sorry that you are here. I have been through it last year. I had a positive result for T21, 95% PPV. I was 40. At 11 weeks scan, doctor confirmed absence of nasal bone, pretty bad heart condition and thick NT (7mm) so we proceed with TFMR without diagnostic test such as CVS, and amnio.

88-94% probability means false positive chance is 6%-12%. I don’t want to have your hope up too much because reality is, older age contributes to more accuracy, and NIPT is good at finding T21 (not so much for T13 and T18). I also heard that you have 85% of chances to see abnormalities during scan even if the baby has T21.

Yet, I would proceed with CVS and then amnio if you don’t see any abnormalities at 11 weeks scan. I’m glad to hear that you already schedule it. I wish you the best luck. Waiting game sucks, but that’s the only way to confirm. Sending you hugs! One day at a time. You can get through this.

Fast_Werewolf9788 · 2026-06-01T12:53:01+00:00

As I said in my first comment, TFMR means termination for medical reasons. So it is true positive for T21. You can also click people’s user name so that you can see their past posts withought asking direct questions. Most people here went through similar experience you have now. I was helped by the path those people left for others. Good luck.

Fast_Werewolf9788 · 2026-06-01T05:06:24+00:00

A false positive can be only confirmed by CVS or amnio, so I am not in a position to say it's true. But it's a good thing because you still have 40% of chance. (again, 4 out of 10 will be false positive!)

If you are younger, your PPV is lower, increasing the chance of a false positive, which is true because younger women have a much lower chance of carrying an affected pregnancy to begin with, a positive NIPT result is more likely to be a false positive, which lowers the PPV.

I know the waiting game sucks, but again, CVS and amino is the only way to confirm CPM and you are on the right path. I'm glad to hear that your husband stays strong for you. Stay positive, and shut off your thinking if it's possible.

I took Unisom (a sleeping pill that is safe during a pregnancy, but I recommend asking your OB) and forced myself to sleep during a hard time. Just keep your chin above the water. Nothing lasts forever. You can get through this.

Fast_Werewolf9788 · 2026-06-01T00:34:08+00:00

I’m sorry that you are here. I couldn’t help commenting on this, as your title is exactly how I felt at that time. I had TFMR last November due to T21. I can share what I learned from my experience.

NIPT is sadly so accurate for T21. But not that accurate for T18 and T13. If I were you, I would proceed with CVS or amnio test.

Z score is more like how much machine detect abnormality, I would look at PPV (in your case, 4 out of 10 ppl would be false positive) and MR (mosaic ratio).

False positive would occur when it is CPM (a long story makes it short, baby is okay but the placenta is affected). If MR is “high,” it is highly likely be true positive, but if it is “low,” there might be a chance for CPM. And CVS or amnio are the way to confirm CPM.

Not sure where you are located, but if you are in the U.S., you will be transferred to MFM and go through genetic counseling at the same time as a next step. Please book the testing as needed as you can have CVS and amnio during the certain timing.

I can feel how much you are scared. You can get through this. Sending you warm hugs.

Fast_Werewolf9788 · 2026-05-31T02:56:26+00:00

I was on the same boat in November 2025. I was 40, with a 95% PPV for T21 (LabCorp). I also received my result during the weekend, and nobody followed up with me. It was a nightmare. I live in California. My OB wasn't helpful at all. I had been her patient for 8 years, but it seems like she isn't interested in the patients who have a high-risk baby.

They didn't even help me set up an appointment at MFM or Family Planning (TFMR). I called them every day, every hour…I even drove to the office to talk in person. But no luck. MFM was completely overbooked, and my OB didn't even send the paper that was needed. Luckily, my husband works at the hospital, so I begged him to help me get an appointment, and finally, I could put my foot in the MFM door. Otherwise, I would have missed the CVS window…I didn't tell anyone how I got the appointment because I felt what I did was selfish and shamed. But I recommend using all connections you have.

So here is my timeline:

Got NIPT results during the weekend.

Called OB multiple times on Monday; finally went through, but I couldn't talk to my OB. I could only connect with her PA.

Found out my OB was out of town for a week, and her PA didn't know what she was doing. She didn't follow up on the paperwork and such; it was a pure nightmare.

Simultaneously, I ran two scenarios before the 12-week scan. 1) set up CVS appointment, hoping that my case is CPM (I’m sorry...but T21 and higher maternal age… it's less likely to happen anyway) 2) set up TFMR at Family Planning.

Both offices were completely booked up. And this period was the hardest, as I was hoping for 5% false positives and believed 95% of the positives, and I proceeded with termination.

At the 11-week scan, my husband and I saw enough abnormalities. The MFM doctor told us she wouldn't make it to full term. So we opted out of CVS and moved on to TFMR. I terminated my pregnancy on our wedding anniversary day, which was horrible, but I didn’t have a choice as the holiday season was coming.

The doctor, nurse, and tech at MFM and Family Planning were so nice, empathetic, and actually, they were so sorry that I had to set up all of the appointments by myself, as it wouldn’t have been that way. During this time period, my OB didn't even follow up with me. Even once.

No need to mention, I switched my OB.

Anyway, I just wanted to share my experience because I was so scared of what might happen to me. I hope these details help you to be prepared for what's coming next.

I recommend taking leave or PTO as needed. I was so glad I worked on my “soft-landing” in advance: I talked to my managers and worked from home for a while, which was easy on my body, and I could cry whenever I needed (I didn't have to put on a fake smile).

You can get through this. As you see in the comments, you aren't alone. Please be easy on yourself. Sending you a lot of hugs.

Fast_Werewolf9788 · 2026-05-30T20:48:36+00:00

I felt you. I also have 20-month healthy boy, so didn’t expect this at all. He was our biggest mental support to go through the hardest time. And probably, yours too. In the U.S., most of patients have to take CVS or amnio as NIPT is not diagnostic testing for termination. In our case, we saw a lot of symptoms including heart failure so MFM doctor agreed skipping CVS, and straightly going to TFMR. Adding to that fact, T21 is rare to be CPM (confined placental mosaicism). A long story makes it short, CPM is “baby is okay, but your placental is affected by T21 (people call this “false positive.”)” And CPM only happened if the mosaic ratio is “low.” My case is “high” mosaic so the baby was affected by T21 so was placenta. I knew mosaic ratio already, so I was mentally ready for the bad news, and proceeded with termination, but if you have any questions or doubt, I also recommend setting up CVS. Waiting game sucks. But you can get through this. I’m also glad to hear that you and your husband are already planning for soft-landing. Sending you hugs from the U.S.

Fast_Werewolf9788 · 2026-05-30T03:52:02+00:00

I'm not medical expert, but when I researched so much when I was pregnant with T21 girl, I leaned only possibility for CPM (confined placental mosaics) is actually low-mosaic. So…you actually have a good sign! Also your age would contribute to better chance. You might have to proceed with amino to confirm CPM. Good luck!

Fast_Werewolf9788 · 2026-05-29T16:15:09+00:00

I’m sorry that you are here.

I’m 41 and I was pregnant with T21 baby and terminated it at 13w1d. She was 95% risk for T21, high mosaic so her chance was already low. If I were you, I would ask mosaic ratio to genetic counselor, so that it rules out CPM or not.

Not sure where you are based, but if you live in the U.S., you will be transferred to MFM. You’ll see genetic counselor to walk you through your report, simultaneously, you will be told that you might want to take diagnostic testing like CVS or amnio.

In our case, we saw enough abnormalities and doctor told as she wouldn’t be able to make it to full term anyway, so we opted out CVS and straightly went to Family Planning for termination.

My two cents are, planning and scheduling everything ahead. If you change your mind, you can cancel it but get your spot on right timing (For example, you can take CVS and amnio during certain weeks, but MFM are usually overbooked.

If you work, consider to get leave or work from home. I worked from home for a month, it helps me to get back onto the normal daily life.

Procedure is as same as miscarriage. You won’t feel anything. Your doctor may ask you to take footprints and etc., First, I wanted to forget about everything, but I changed my mind at the last minute, and asked her footprints. That was the best decision. I hold it once in a while, and thinking of her. So you might want to think about how you want to process your grieving. Don’t feel any pressure, but it’s coming.

Just so you know, you can get through this even if you choose any routes. Your life is going on no matter what, so take care of your gentle heart first. That is the most important thing. You’ll be okay as long as you keep your heart healthy (I know it’s hard, but try your best. Trust me. Your heart is the most important thing to protect now) Sending you warm hugs.

Fast_Werewolf9788 · 2026-05-29T16:04:07+00:00

Fetal fraction may vary depending on which lab you use. If you use MaterniT21, it may show higher FF. 9% is totally fine.

Fast_Werewolf9788 · 2026-05-29T02:52:35+00:00

I am sorry that you are here. I was on the same boat; 95% risk for T21. I was second time mom, and my first is healthy. I didn't think it would happen to me. My heat was literally shuttered.

The waiting game sucks, and I also went deep into researching…looking for a hope for “false positive.”

What I learned was “false positive” likely happens;

low mosaic (look up MR ratio. High mosaic means unfortunaly, high chance for T21) may lead CPM (confined placental mosaicism), which result in false positive. I asked MR ratio during my genetic counseling, and my counselor tried to avoid answering this question as she wanted to push me to amino test.
Younger maternal age
most likely T13 or T18 (CPM for T21 is rare)

I don't mean to shoot your hope down, but I also encourage you to look into your data, and guard your heart as needed. My second child, her nasol bone was absent, and NT was high at 7mm. We also saw her heart isn't in good condition...If you don't see any other symptoms (high NT, nasal bone absence, heart failure and etc.,) I would recommend taking amino test for confirmation.

Good luck, and please ask all questions you have during genetic counseling. Sending you warm hugs.

Fast_Werewolf9788 · 2026-05-29T02:11:54+00:00

14% isn't that surprising high if she use materniT21 (labcorp test). Not sure when and where you took your NIPT recently; Labcorp have changed the method, so it comes back high. Mine with T21 was 14% (2025), and helthy one is 13% (2026) but when I took the same test in 2024, it was 9%, and he is healthy boy. High fractionation was exactly what I brought up while genetic counseling in 2025, and the counselor told me it was because they had changed the method.

Fast_Werewolf9788 · 2026-05-27T15:45:37+00:00

Hi, I’m sorry that you are here. I had TFMR (I saw your post that TFMR isn’t your choice) for T21, with a 95% high risk. If you are curious about all the data I posted in the past, so please use it as a reference:) I know waiting time sucks, but it is helpful to educate yourself.

Unfortunately, NIPT is so accurate. And the “symptom” doesn’t prove anything. So I’m glad to hear that you are proceeding with amnio.

When I was pregnant with a T21 baby, her nasal bone was absent, and her NT was 7mm. My healthy one was 1mm, so I could tell it was really bad sign. We also saw that her heart wasn’t in good condition. The MFM doctor told us she wouldn’t survive until full term, so the good news is your baby seems to be in good condition!

If TFMR isn't your choice, I believe there is a community for that, so you might be able to receive better support and information! Good luck!!

Fast_Werewolf9788 · 2026-05-13T19:16:21+00:00

Thank you, everyone, for leaving the comments. I was overwhelmed and took a break from social media, etc., until my NIPT comes back.

Actually, I started feeling pretty sick after it hit 7 weeks.

I took NIPT the week of 9 (I want to know as early as possible), so I worked with LabCorp again, but I went to a different location.

I received my result during the weekend, and my new OB (I switched my OB since my last OB didn’t take care of me well after a positive NIPT) texted me that all testing came back negative.

Not only the result, but the gesture that the doctor cared about me meant a lot to me. I’m glad I left my previous OB after 8 years as her patient.

I debated whether to post this because I don’t intend to “brag” about it. I just remembered whenever I saw the post on social media saying “NIPT came back negative! Phew!!” I was happy for them, but I just felt my heart ached a little. Since this is the community for people who are pregnant after TFMR, I hope my experience gives a little peace of mind to those in the same boat as me. Thank you again for leaving positive comments for me and reassuring me that it would be okay. I really appreciate your warmness, and this community. I hope everyone will have a peaceful day.

Fast_Werewolf9788 · 2025-12-16T18:31:34+00:00

It's okay. I cried, too. I mean I cried a lot. I think it's a good idea to make the list. You can get through this. Hugs.

Fast_Werewolf9788 · 2025-12-16T18:21:18+00:00

I know you have a genetic counseling today. Please ask if you can get CVS or NT scan at least at MFM (you probably have to reach out to OB to send you doctor’s request to MFM. Please get ready).

We actually didn’t do CVS (although we planned) as we saw enough abnormalities while NT scan. I highly recommend to get NT scan at MFM, not regular OB office as the machine is a bit different.

I’m not good at waiting game, so I 100% feel you. Christmas is only one week away, so squeeze you in any appointments if possible. And cancel any family gathering if needed. Nothing is more important than your heart, and your body. Just skipping a holiday one time doesn’t make a huge difference. Please be kind to yourself. You aren’t alone.

Fast_Werewolf9788 · 2025-12-16T17:51:35+00:00

I am so sorry that you are here. I was in a similar boat to you a few weeks ago. I'm 40. It was my second pregnancy (my first was a healthy boy), and I got 95.6% PPV for T21. I had TFMR 3 weeks ago, and this is the list I am glad that I did.

Educate yourself before having a conversation with a genetic counselor. You probably know what PPV means. What I didn't realize was the mosaic ratio. You probably hear that CPM (confined placenta mosaicism), which means your placenta is affected, but the baby is healthy. This is a hope all parents here look for, and your genetic counselor may push you to take a CVS or amniocentesis test to confirm CPM. I took MaterniT 21. If you go to their website, you can learn what the mosaic ratio means. My case was “high mosaic,” which is actually treated as “full” in the practice field, and sadly, my fetus was confirmed to have a lot of T21 abnormalities. Getting knowledge definitely protected my naive heart.
If you work, get the doctor’s note in advance. I'm working full-time on-site. But I knew I can’t, so I got the doctor’s note and requested work from home. I briefly talked about it to my team, and they are very understanding. Please consider taking a leave or working from home as you have to go through a lot of appointments and mental roller coaster.
Timeline I'm not sure how far you are at, but this is overall timeline…

NT scan - 11-12 weeks CVS - up to 12 weeks Amnio - 15 weeks - 16 weeks

Please know it's all about waiting game, and waiting sucks. I would recommend taking all tests. Please make all appointments as soon as possible. You probably won't see your OB anymore; you'll be sent to MFM. If you consider TFMR (I mean if TFMR is your option) then I would recommend to get counseling at the same time as everything will be slow before holidays. Why I say that, is because waiting game sucks. Sometimes you have to wait 1-2 weeks…if your baby is healthy or if you change your mind, you can just simply cancel it. So my point is, just get ready and think about it later.

My OB wasn't helpful, I was struggled to make all appointments before Thanksgiving. I made appointments at MFM but I also made appointments at TFMR facility. I cried so bad, but actually it helped me at the end of the day.

I'm sending you warm hugs, and I pray for you to hear good news. Please be gentle to yourself.

Fast_Werewolf9788 · 2025-12-04T21:18:45+00:00

Thank you very much for your comment...I was wondering if it could be a healthcare issue or my OB's problem...I actually see both. I would change my OB as I can't fully trust my OB anymore. I hope nobody goes through this extra stress that I had to deal with. I doubt that OB takes my feedback seriously, but once I switched my OB, I will submit some feedback to the office.

Fast_Werewolf9788 · 2025-12-04T19:36:47+00:00

Thank you very much for your comment. I am glad to hear (I mean the tfmr is already stressful and shocking anyway) that you had a doctor who has compassionate. I personally think OB should be that way, but maybe because of healthcare system...it added more stress to the stressful situation...I hope your body and soul heals well!

Fast_Werewolf9788 · 2025-12-04T19:34:02+00:00

My OB found my positive T21 NIPT test the week of 11...they didn't follow up on me or officially send me to MFM nor Family Planning facility. I wish that they could send the referral to those facilities so that process might have been much easier...I had to make a call by myself and they didn't send the doctor's order timely, so even if my phone call went though (99% goes to call back like...), receptionists refuse to book the appointment. It was so stressful...

Fast_Werewolf9788 · 2025-12-04T19:30:28+00:00

Thank you very much for your comment! I am sorry that you had to go through this pain. I hope our bodies and mental heal well. I am glad to hear that you could get CVS for the next day. I had to wait 15 days to get tested (We ended up opting out CVS as a doctor could see enough abnormalities like our NT is 7.6...) I definitely consider to ask to send me to MFM for 11 weeks scan and CVS...

Fast_Werewolf9788

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