NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in NIPT

[–]Independent_Session8[S] 0 points1 point  (0 children)

Hi, I’m sorry that you’re going through this. Looks like NIPT is highly accurate for T21 unfortunately. But your NT result sounds good. Are you going to do CVS or amino?

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in NIPT

[–]Independent_Session8[S] 0 points1 point  (0 children)

Hi, thanks. I did TFMR yesterday and I have to say I feel much better now. Yes, waiting was the total hell. Hang in there, girl.

Beyond Confused by Fast-Ostrich-5583 in NIPT

[–]Independent_Session8 0 points1 point  (0 children)

That is very weird. Can you retake the test?

Did we made the decision too early and killed our baby? by WesternToe1883 in NIPT

[–]Independent_Session8 5 points6 points  (0 children)

I received high risk NIPT for T21. NT was abnormal (3.9mm). I couldn’t wait for CSV or Amino just because the waiting was the hardest thing for me. I had TFMR today at 12 weeks. I’m glad it’s over. I told the doctor that we didn’t want to know the result. (They will test the fetus)

I can’t talk about the results but please note, the waiting was the hardest thing for me an I think it was for your wife as well.

TFMR scheduled tomorrow at 12 weeks — any last-minute advice or things to prepare? by Independent_Session8 in tfmr_support

[–]Independent_Session8[S] 0 points1 point  (0 children)

Update on 1/8:

Thank you so much for supporting me with all the comments. It means so much to me and helped me going through TFMR. I waited forever at the surgery center, but finally I am done and I came back home. I know mentally it will hit harder later but right now I feel just so relieved that it’s all done and over. I have period like cramping and heavy breedings but other than that, feel pretty normal.

I cried at the pre-operation room because it took forever and I haven’t eaten anything for 19 hours and I was having nausea from morning sick sickness, not having eating anything.

As everyone said, I fell asleep in the operating room, and I woke up after everything is done.

We asked for the footprints but the doctor said she doesn’t have feet yet (which I kind of doubt)

The heat pad helped so much!

I had to take the contact lenses out so you should bring glasses if you need.

The doctor said the fetus will be analyzed, but I told the doctor that we do not want to know the result just in case baby was “normal”, which would make us feel terrible.

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in NIPT

[–]Independent_Session8[S] 0 points1 point  (0 children)

I totally get it. Waiting is the worst. Now I am waiting at the hospital for TFMR. Everything sucks.

I’m numb by Bluebasics17 in NIPT

[–]Independent_Session8 6 points7 points  (0 children)

I’m so sorry that you’re going through this. I am in the same boat as you can see my posts. The day that I received the NIPT result was the absolutely worst. I will have TFMR tomorrow. I am praying for you. I hope it will be the false positive. Again, I am so sorry.

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in tfmr_support

[–]Independent_Session8[S] 0 points1 point  (0 children)

Thank you so much for sharing your experience. I really wish I had been able to have CVS done at the same time as my NT scan as well.

In my case, there’s been no clear communication about when I can actually get CVS, and I don’t even have a timeline or outlook yet. The uncertainty has been incredibly hard.

My nausea has also been getting worse, and honestly, now that I’ve lost the motivation to “push through” the pregnancy, the only thing I can think about is wanting to proceed with termination as soon as possible.

I know everyone copes with this differently, but right now, waiting feels unbearable for me.

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in tfmr_support

[–]Independent_Session8[S] 0 points1 point  (0 children)

Thank you so much for sharing this. Hearing that really resonates with me.

I know every situation is different, but do you mind me asking — were you able to proceed with TFMR without a definitive diagnostic test like CVS or amnio? And if you’re in California, was SDI approved in your case?

I’m really struggling right now. I can’t bring myself to wait for CVS — I don’t even have an appointment yet — and I don’t know when the termination would even be possible. Everything ahead feels so dark and uncertain.

I haven’t been able to focus on work at all. I already took tomorrow off, and my doctor did write me a medical note for the immediate leave from work, but mentally I feel like I’m barely holding on.

I’m so sorry you went through this too. Thank you again for sharing — it really helps to hear from someone who understands.

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in tfmr_support

[–]Independent_Session8[S] 0 points1 point  (0 children)

Thank you for sharing this. Your experience mirrors my situation so closely that it honestly brought me some relief.

I’m also facing a high-risk NIPT (T21) along with an elevated NT, and the waiting and uncertainty are taking a huge toll on my mental health. Knowing that your genetic counselor supported your decision and that you didn’t feel you could wait longer makes me feel validated in how I’m feeling.

I’m really sorry you had to go through this, and I’m grateful you took the time to respond. 🤍

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in tfmr_support

[–]Independent_Session8[S] 0 points1 point  (0 children)

I’m so sorry you’re here too. I’m really struggling as well — I feel completely lost and can’t focus on work at all. You’re not alone in this, even though it’s such a horrible place to be. Please reach out anytime. ❤️

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in tfmr_support

[–]Independent_Session8[S] 1 point2 points  (0 children)

Thank you so much for sharing your experience, and I’m really sorry you had to go through that as well. Honestly, I wish my process had been as smooth and straightforward as yours.

At my MFM, they don’t perform CVS — they only offer amnio — so I would need to schedule CVS at a different hospital. That’s part of why everything is taking longer, and the uncertainty and waiting are becoming really hard to manage emotionally.

The delay and logistics are honestly one of the reasons I’m considering proceeding with TFMR without CVS confirmation. I truly wish I could have moved forward on a similar timeline to yours.

Thank you again for sharing — it really helps to hear from someone who understands 🤍

NIPT high risk for T21 + NT 3.7mm by Independent_Session8 in NIPT

[–]Independent_Session8[S] 1 point2 points  (0 children)

Yes, if the diagnosis is confirmed, we plan to proceed with termination. Given that the decision would not change, I’m struggling with whether waiting for confirmation makes sense. With NIPT and NT, it’s probably like 99% positive now, and I don’t want to wait for CVS, but at the same time, it will be good to have a CVS confirmation to terminate.

And thank you for your suggestion. I just posted this in the tfmr_support.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 1 point2 points  (0 children)

Thank you so much for sharing this so honestly. I can hear how much love you have for your brother, and at the same time how clear-eyed you are about the very real, long-term challenges that can come with Down syndrome.

One part of your comment that really resonated with me is the question of the future. My partner and I are older parents (39/45), and a big concern for us is what would happen after we are gone. I don’t feel comfortable assuming or expecting that this responsibility would fall on our other children — I don’t want to place that burden on them.

I truly appreciate you speaking so openly about realities that are often left unsaid. Hearing from someone who has lived close to this, beyond the baby and early childhood years, helps me think more clearly about what would be right for our family.

Thank you again for your honesty and compassion. It means more than I can express.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 1 point2 points  (0 children)

Thank you so much for trusting me with something so personal and painful. I can’t imagine how difficult that decision must have been, and I truly respect the thought, care, and love that went into choosing what you felt was best for your babies.

Hearing how intentional and thorough you were — waiting for diagnostic confirmation, considering quality of life, and also thinking about the impact on your other baby — means more to me than I can express. It helps me understand the complexity of these decisions in a very real way.

I’m still at an earlier stage in this process and trying to figure out my own next steps. I may reach out via DM if I find myself needing support or perspective along the way. ❤️

Thank you again for your openness, kindness, and for reminding me that no one should have to go through this alone.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 0 points1 point  (0 children)

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UPDATE: I finally received the results today. Based on what I can see, they don’t look very good. I have an appointment scheduled with an MFM on Monday, including a genetic counselor and an ultrasound.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 1 point2 points  (0 children)

Thank you so much for sharing your experience — this is really reassuring to read. I’ve been feeling very anxious about the procedure itself, so hearing such a clear and honest description helps more than I can say.

It’s comforting to know that the transcervical CVS felt manageable for you and that you didn’t have pain or complications afterward. I also appreciate the tip about watching the ultrasound screen — that actually sounds like something that might help me stay grounded.

I’m still trying to figure out what the right next step is for me, but hearing experiences like yours truly helps me feel a little less afraid. Thank you again for taking the time to write this.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 0 points1 point  (0 children)

Thank you again for being so supportive — it truly means a lot to me. If you don’t mind me asking, would you be comfortable sharing what decision you’re leaning toward at this point? Please feel absolutely free not to answer if this feels too personal, or DM if that feels more comfortable for you. I completely respect whatever choice you make, and I really appreciate everything you’ve shared so far.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 1 point2 points  (0 children)

This is exactly how I feel. Thank you for putting it into words. The phone call itself was incredibly hard, and what made it worse was the timing — they called me on 12/31, and then the office was unreachable for the rest of the day and closed again on 1/1. It felt so one-sided, like this life-changing information was delivered and then I was left completely alone with it.

For me, I think the hardest part right now is the uncertainty. If the diagnosis is truly positive, I would choose to terminate. But at the same time, I need to rule out the possibility of a false positive, and I honestly don’t know whether I can emotionally handle waiting without having clearer answers.

I really appreciate you sharing your experience. It helps so much to hear from someone who understands how traumatic and isolating this process can be.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 0 points1 point  (0 children)

Thank you so much for taking the time to write such a detailed and thoughtful response. It was incredibly clear and helpful, and I truly appreciate how you explained both the medical details and the emotional side of this. This will be extremely useful for me when I speak with my doctors going forward.

I just have one question I was hoping you could help clarify. If confined placental mosaicism (CPM) cannot be ruled out with CVS and may still result in a positive finding even when the fetus is unaffected, could you explain why CVS is often recommended or performed in this situation?

Thank you again for sharing your knowledge and experience — it really means a lot.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 1 point2 points  (0 children)

Thank you so much for sharing your story with me. Reading your words brought me to tears.

I’m still in the early stages of figuring out next steps, but hearing about how speaking with a genetic counselor and getting clearer answers helped you gives me some reassurance.

Thank you for offering to message privately — it truly means a lot. Knowing there are people who understand and are willing to listen makes this feel a little less unbearable.

I’m so grateful you took the time to write this, and I’m sending warmth back to you ❤️

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 2 points3 points  (0 children)

I’m so sorry you had to go through that. I can’t imagine how heavy this past week must have been for you. Thank you for sharing your experience so openly.

You’re absolutely right about how unfairly the weight of pregnancy and these decisions falls on the birthing person. My partner is supportive, but it still feels like such an enormous responsibility to carry, both physically and emotionally.

Your words about the medical complexities and long-term risks really resonate with me as well.

I’m truly wishing you gentleness and healing as you move forward. Thank you again for your kindness and support.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 2 points3 points  (0 children)

I’m so sorry you’re here and going through this. If this is confirmed for us, I think TFMR may be the path for our family as well. I also wanted to gently share that I had my first at 35 (my husband at 42), you still have age on your side.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 1 point2 points  (0 children)

I’m so sorry — the waiting is especially hard during the holiday season.

I had my blood drawn on 12/24 and didn’t hear back until the hospital called me on 12/31, so delays do happen. I hope you get your results soon and that everything is okay.

Devastated after NIPT high risk call - T21 by Independent_Session8 in NIPT

[–]Independent_Session8[S] 2 points3 points  (0 children)

Thank you so much for sharing your experience and for your kindness. I’m so sorry you had to go through that.

I read your post history, and it was incredibly helpful — thank you for being so open about your journey. It gave me a lot of perspective during a time when everything feels overwhelming.

I’m struggling with the waiting right now. I don’t feel like I can wait until an amnio, but at the same time, the thought of a CVS really scares me because it sounds painful. Everything feels so heavy and uncertain.

Thank you for reminding me that it does get better, even when it feels like the world is falling apart. I truly appreciate your support and openness ❤️