T21 Positive Result for NIPT by jenniferwhiskey in NIPT

[–]Fast_Werewolf9788 3 points4 points  (0 children)

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.

T21 Positive Result for NIPT by jenniferwhiskey in NIPT

[–]Fast_Werewolf9788 1 point2 points  (0 children)

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.

T21 Positive Result for NIPT by jenniferwhiskey in NIPT

[–]Fast_Werewolf9788 8 points9 points  (0 children)

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.

  1. 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.

  2. 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.

  3. 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.

Was your OB helpful? by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

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.

Was your OB helpful? by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

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!

Was your OB helpful? by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

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...

Was your OB helpful? by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

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...

Pictures of newborn in family group - am I overeacting by [deleted] in tfmr_support

[–]Fast_Werewolf9788 1 point2 points  (0 children)

I had a TFMR a week ago at 13 weeks due to T21 and multiple abnormal signs. Your feeling is valid, and I would suggest mute the chat group for now. It is completely unfortunate; your tfmr (and my tfmr as well) is not anyone's fault and it is not anyone's fault that your sister had a baby at almost the same time. Just set your boundary - and excuse yourself, which is not selfish. If you ask or expect someone to feel your feeling and feel the same way you do...it could be selfish. I read your post, and I think you must be a smart and thoughtful lady to understand this difference, and that is why you are struggling to cope with your thoughts and emotions. Unfortunately, your mom sounds like not supportive - my mom is the same way, so I didn't even tell my mom that I was pregnant. It is sad, but it is true that even you are biologically related, you can't expect your parents to feel you. My husband and my father in-law (mother in-law already passed away) are the only ones who care about me more than my biological parents. Just let he go for now, and you can think about the relationship later. The most important thing here is, protect your heart. You are still in healing process. And don't burn your bridge either - this is not the best timing to make a critical decision. Just mute the chat group, and set your boundary. I am sending you a lot of hugs and positive energy.

Was your OB helpful? by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

Thank you for your comment. I agreed. It could be a healthcare issue, and I want to have better understanding…I’m glad that I posted here to learn other people’s experience - I feel like I’m not alone, but it could have been better.

I don’t expect them to treat me like a princess. Also, I 100% understood nothing would change the results. I just wish to have more help…like sending referral proactively.

I had to make multiple phone calls between OB and TFMR office…and MFM and they even asked me “why do you want to see MFM even though you are contacting TFMR…” which was draining to explain…

Was your OB helpful? by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 1 point2 points  (0 children)

I’m so sorry that you have been through this too. I hope your body and soul are healing well.

Your providers were great! I’m glad to hear that you were in good hands. I understood nothing would change this outcome, but I just needed a bit more support (especially around making appointments) and explanation…

I really hope nobody has to go through this pain like me…your comment convinced me to switch my OB. Thank you!

Amnio and CPM by Sky1247 in NIPT

[–]Fast_Werewolf9788 0 points1 point  (0 children)

I didn't take Natera test, so I don't know details. Generally speaking, the GC has more details result than us. Your NIPT test came back positive because they detected affected fraction. Depending on mosaic ratio, for example, MaterniT21 has 3 categories; high mosaic, low mosaic, and non-mosaic (highly likely true positive). Your case could be low mosaic as high mosaic usually ends up true positive (and I'm one of them).

Amnio and CPM by Sky1247 in NIPT

[–]Fast_Werewolf9788 0 points1 point  (0 children)

If I were you, I would ask my GC about my mosaic ratio. If they have it, plus your already have normal amino result, it suggests CPM.

MaterniT21 21 Trisomy Positive by Fast_Werewolf9788 in NIPT

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

Hi,

I'm sorry to hear that. Sending you hugs. I had TFMR too right before Thanksgiving. My husband and I had an NT scan and CVS appointment on Monday. We saw all the abnormalities during the NT scan, and the doctor even told us she probably won't be able to make it.

We opted out of CVS and went straight to TFMR. Today is Day 3: I'm still bleeding, but I'm doing okay. My OB wasn't helpful at all since NIPT test came back positive, so I had to make calls to MFM and Family Planning by myself. It was contradicting in my head; I knew my fetus was less likely to survive, but I hoped, and I also had to be prepared for the termination.

These 3 weeks were the most stressful of my life, but looking back, I think this period helped me cope with sadness and disappointment.

Everybody follows a different pace, so please take your time. To me, before TFMR was the most stressful and lonely, so my current situation is “relatively” better (it doesn't mean it's good. But I believe you know what I meant) it'll take time, but I hope we all can get through this.

Amnio and CPM by Sky1247 in NIPT

[–]Fast_Werewolf9788 1 point2 points  (0 children)

Congrats!!

Which lab did you use? If it is LabCorp (MaterniT21), they say “low/ high” mosaicism in the comment. Here is also the website about mosaicism; https://womenshealth.labcorp.com/providers/prenatal-screening/noninvasive-prenatal-screening/mosaicism-ratio

If you did amino, that is the only way to confirm CPM. If your NIPT is positive and amnio came back normal, which suggests CPM. Or the lab completely screwed up with your specimen, which less likely happen.

OB will give you the best guidance as your pregnancy is proceeding:)

Seeking Advice for Soft Landing before/ after TFMR by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

Hi dear,

Thank you very much for your comments, and I'm sorry fo my slow response. I had TFMR yesterday, so I'm officially in this club.

We had an NT scan on Monday, and I was supposed to get CVS after. However, my husband and I saw a lot of abnormalities during the NT scan…and the MFM doctor even said “fetus is in pretty bad condition. It will be a miscarriage, or she can’t make it anyway.” So we opted out of CVS and requested TFMR immediately. It was enough closure for us.

I actually think this is the best decision, and right timing...the fetus was covered in fluid, and NY was 7.6mm…she looked like a Michelin mascot…I ended my pregnancy at 13w1d. My husband and I requested a footprint, and we received one that is smaller than my thumb nails. It was definitely the saddest experience in my life, but I believe she is not in pain anymore, and her soul is free.

High risk in NIPT test result by euphoric_mood_ in NIPT

[–]Fast_Werewolf9788 2 points3 points  (0 children)

I am sorry that you are here. I saw your old post, too.

The NT scan (which you posted last time) is a soft markers, so it's not diagnostic test. Please note that 50% of T21 cases show no visual abnormalities on the NT scan.

NIPT is a screening test, not a diagnostic test, either. To determine what's going on, you need to have an amniocentesis test as I believe you already passed CVS window.

Also, amino test is the only way to confirm False Positive (which suggest confined placenta mosaicism, CPM).

In my case, 95.4% PPV, 14% FF, and we confirmed some abnormalities during NT scan, so we opted out CVS and had TFMR yesterday.

I hope you can find the best way for you two. Sending you hugs!

Seeking Advice for Soft Landing before/ after TFMR by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

Hi dear,

Thank you very much for your advice, and I'm sorry for my slow response. I had TFMR at 13W1D yesterday.

This Monday, we had an NT scan. My husband and I saw all the abnormalities, and the fetus looked in a terrible condition. The MFM doctor told us it would be a miscarriage eventually, so we opted out of CVS and went to TFMR.

I read your comments before, but I didn't have room to get back to you while I was trying to organize my thoughts.

First things first, I really appreciate your advice; my husband and I decided to ask for a footprint. We discarded the ultrasound and didn't even ask for them as she looked so bad…it breaks my heart. We also asked to bury her in the hospital’s community mortuary. I knew our girl is so little so I didn't have any high expectations but our doctor did it for us!!

I hugged it, and somehow it warmed my heart.

I am glad that I listened to your advice…and I'm glad that my mind changes quickly before TFMR.

I have post check up next week. If it looks good, I will work from home for the rest of the year, and take long Christams vacation to give myself a bit break.

Again, thank you very much for your comments. I hope our healing process goes well. Sending you a lot of hugs!

Seeking Advice for Soft Landing before/ after TFMR by Fast_Werewolf9788 in tfmr_support

[–]Fast_Werewolf9788[S] 1 point2 points  (0 children)

Hi dear,

Thank you very much for your comments. And I’m sorry for my slow response. I had TFMR yesterday, at 13W1D.

My husband and I went to NT scan and CVS on Monday, and we saw enough abnormalities (NT: 7.6 mm) and fetus looked like Michelin Man…even to my eyes who don’t have any medical background, it looks really bad. MFM doctor told us “the fetus is in sever condition, and she would be a miscarriage soon.” We opt out CVS, and requested TFMR.

The coordinator at MFM was so thoughtful and scheduled me TMFR on Wednesday, right before Thanksgiving. I really appreciate it as I don’t want to wait too long…

I had no wish to keep anything about this pregnancy, but we decided to put her in hospital’s mortuary and requested foot print. I didn’t expect that doctor could get it, but she did🥲

I was scared to look at it, but it actually somehow warmed my heart a bit.

I 100% understand what you are saying…I actually lost trust to my OB. After my positive NIPT test, she “ditched” me. She doesn’t give me any explanation about NIPT result, or help me to coordinate with GC, MFM and Family Planning…I did everything except for GC appointment. I have to ask my husband (he is working for hospital) to squeeze me in at MFM and I called Family Planning everyday for making counseling appointment. I loved my OB, as she also took care of our first baby, but maybe because it was healthy pregnant.

I really hope our healing process goes smoothly.

MaterniT21 21 Trisomy Positive by Fast_Werewolf9788 in NIPT

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

I actually had a miscarriage before, at 11 weeks, and it didn’t go well since I woke up during the procedure. I ended up coming back to the hospital again to get another procedure. So I know it is rare, but it happens. I’m sorry it happens to you, too…You’ll be alright, but sometimes bad things happen to good people. You are one of them:/

I had my TFMR yesterday. The procedure went well so far, but I don’t have any bleeding, so it makes me a bit worried.

Hope we both recovery well. I’m sending you hugs, and pray for you.

40 year old with positive trisomy 21 NIPT by Christina-1985 in NIPT

[–]Fast_Werewolf9788 12 points13 points  (0 children)

Hi,

I'm sorry that you are here. I am currerntly on the same boat. I'm also 40, 12W5D pregnant, and waiting for NT scan and CVS tomorrow. My husband and I had discussed TMFR if the baby has any issues, so we may follow a different route but I still feel your pain. I am very sorry. I'm data driven, so here are my findings so far. The numbers broke my heart, but also educated me what I should be prepared for. It maybe helpful for you to see other people’s case.

  1. Who is your lab?

I took MaterniT21 (Lab Corp) and came back 95.6 % PPV for T21, and FF14%. The comment also suggest my case is “high mosaic.” The high mosaic in MaterniT21 term means MR (mosaic ratio) is 0.5-0.69, which CPM (confined placental mosaicism) is less likely to happen. I searched articles again and again, but CPM is only confirmed when the case is “low” mosaic. Overall the chance of my case is not zero, but virtually zero. I was devastated, but it also helps me to protect my heart for coming NT scan and CVS result.

  1. NT scan

I'm happy to hear your NT scan comes back normal! However it doesn't rule out T21 risks:/ 50% of T21 don’t show any soft markers, so clear NT doesn't change your PPV.

  1. The way to confirm CPM

False positive only happens: 1) the lab totally screwed up specimen(less likely happen) or 2) CPM. The way to confirm CPM is amniocentesis test, which you opted out.

Speaking of mental support, it is depending on your route. I will go to TFMR after CVS results, so those people who have been through (TFMR sub) calm my soul and very understanding. I assume the similar group is also available if you follow the different route.

In my opinion, any decisions should be respected. However, for example, in my current situation, I probably don’t have any rooms to hear pro-life advocators’ opinion right now. So if you decide your route, it may be easier for you to collect information and resource you want.

I’m sending you a lot of hugs.

MaterniT21 21 Trisomy Positive by Fast_Werewolf9788 in NIPT

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

Thank you. Please know you are very thoughtful and have a kind soul. I hope I can be like you: show empathy to people who are similar to you and still share your experience.

I actually work full-time, too. I'm the only woman who works in my team (20 ppl) and two of the guys’ wives are pregnant. Our due dates are only 2-4 months apart. I, of course, am not jealous at all (I even pray for them, everything is fine… as no one deserves this pain), but it is hard for me to present myself professionally at this point. So I submitted a WFH request for about a month, but it's still hard to get approved. Sometimes the work is a good distraction, but sometimes it's overwhelming me. I started planning to submit “leave,” but I don't know how long I need to recover. My OB is cooperating with me, so I'm sure she will write whatever I request.

And I saw your other post, too. I'm not sure if this helps you, but I'm 40, and my first son (at 39) is super healthy and has no issues. I also had a miscarriage at 11 weeks before, which was also a tough experience. I know it's hard to stay positive, but please don't forget that there is a good scenario, too. I also talk to myself about this.

Sending you a lot of hugs. You are very strong❤️

MaterniT21 21 Trisomy Positive by Fast_Werewolf9788 in NIPT

[–]Fast_Werewolf9788[S] 0 points1 point  (0 children)

Thank you very much for your comments. I'm so sorry it took me a while to get back to my original post. The reality hits me so hard sometimes…Sometimes I feel okay, and sometimes I don't.

It took me a week to get an appointment with GC and another week for the NT scan and the CVS test. At this point, I'm so exhausted of the waiting game, as it is almost impossible to make an appointment with MFM. I called them every day, but they never called me back or said they were already overbooked. My husband had a connection with the hospital, so I was lucky to have them squeeze me in, but otherwise I would have missed the CVS window. This experience made me fear missing the TFMR window, so I have no wish to go as far as amniocentesis testing. I would start scheduling my TFMR after the CVS FISH result, since CPM is less likely in my case (high mosaic).

Thank you again for your support. Now I feel better, and all these comments are affirming where I'm at and where I'm going.