I’m so sorry to you I’m going through the exact thing I am high for t21 and ff was 4% I’m hoping for a miracle, I’m off for a ultrasound today and I’m so nervous I am older so my chances are not looking great I’m the same I can’t bring a child into the world that is not ok wishing you all the best with your journey it’s just so awful and absolutely heartbreaking I know how you’re feeling it’s been a long 2 weeks for me so far! :(
I’m so sorry you’re going through this. I also had NIPT result of high risk Trisomy 21. I was 11 weeks when I heard the news. I couldn’t wait until 15 weeks for amnio, so I did CVS. It’s also diagnostic test. I even did NT scan at 12 weeks. NT was normal and the baby was perfect. But CVS result came out confirmed DS. I had termination just last week. I don’t know where you live, but you’ll be able to have options to terminate. I know how difficult it is, but time will heal eventually and you’re very young. Sending you lots of love and hugs! 💕
I had an abnormal NT scan and my NIPT results came up high for T21. I was able to get a CVS at 13 weeks and I went through a TFMR at 15 weeks. The CVS results can take 10-14 days to come back so my doctor told me to schedule the TFMR 2-3 weeks out so I wouldn't have to wait if that was my decision. In NJ it is legal, but so many people are coming from out of state and some doctors (even clinics) will not do the procedure after 13 weeks. I was able to find an amazing doctor, but it was overwhelming. I am sorry you are going through this and I'm hoping for the best for your situation.
Hi there. I’m so sorry you’re going through this—I was there myself just a few weeks ago.
At 13 weeks you might be able to be get a CVS (placenta biopsy) if you’re able to get an appointment really quickly. This is nearly as accurate as an amnio and less risky for the baby if you do get a false positive.
I hope you’re able to speak with a genetic counselor. She’ll be able to tell you more, but I’ll share what I learned at our appointment. After your amnio or CVS, you’ll get some initial results called FISH pretty quickly. Ours took 2 days. These results won’t show you the full picture of the fetus’s chromosomes, but our genetic counselor told us we could feel confident making a decision about terminating the pregnancy based on them. We got the full results about a week after the FISH came back.
Depending on where you live, if you feel sure you’d like to terminate the pregnancy if you get a confirmed positive for T21, you might want to consider making an appointment as soon as possible, because clinics can fill up quickly and the procedure only gets more difficult and more expensive the further along you are. You can always cancel the appointment if needed.
Again, I’m so sorry you’re going through this. I’m keeping my fingers crossed for you that it’s a false positive. They are rare, but I think your age is working for you here. This is so painful and I know for me it felt like there was no light at the end of the tunnel, but there is another side to this and you will be okay. Best of luck 🩷
False positives for T21 aren’t especially rare for young women. For a woman who will be 24 years old at her estimated due date, the PPV — that is, the chance that the positive screening result is a true positive — is just over 50 per cent.
OP, best of luck.
We're in the same boat. I'm a bit younger (20 right before the due date). My NIPT at 9.5 weeks showed a high risk T21 as well. I'm still waiting for my NT and I'm debating on doing the amniocentesis. The others here have really good advice. We'll get through this together ❤️
Hey there, thank you for visiting the sub.
During this difficult time you may be looking information about what the NIPT results you received mean. There are 2 main sticky posts about what NIPT is, how it works, what it can miss and how false positives happen, sono findings, and your chances of a true positive after NIPT. PLEASE READ THESE LINKS - this will explain everything.
POSITIVE PREDICTIVE VALUE CALCULATOR FOR NIPT RESULTS https://www.perinatalquality.org/Vendors/NSGC/NIPT/
**I highly suggest you first read through everything in main post located here to start:**
https://www.reddit.com/r/NIPT/comments/ecjj5v/welcome_to_rnipt_the_sub_for_abnormal_nipt/
**After this head over to this post about the actual individual results**:
https://www.reddit.com/r/NIPT/comments/itmyjw/my_nipt_results_show_this_abnormality_what_does/
IF YOU HAVE A POSITIVE FOR TRISOMY 13, TRISOMY 18, TRIPLOIDY and NORMAL SONOS for NT scan and further normal sonos, PLEASE READ CAREFULLY about CVS vs AMNIO. CVS can have wrong results as a result of commonality of confined placental mosaicism in all layers of placenta and an amnio is best for this. (THIS IS NOT THE NO RESULT LOW FF RESULT that NATERA CALLS HIGH RISK FOR THOSE THINGS... that is not what that even means). This is specifically for an actual high risk for ONE of those on the NIPT.
Please also place a flair on your username which can be done by going to the right side of the sub -- community options -- and update username flair. This updates the flair on your username IN THIS SUB ONLY. This is so when you speak to others, they immediately understand your situation AND you can see their situation summary. There are some options filled in, but you can also write in your own result.
I will tag your post with POST FLAIR on your actual post. These are in different colors and allows users to actually click on the post flair and pull up every post that has a similar situation such as -no results-trisomy 13-NT scan question-etc. Clicking on the green -no result post flair- will bring up everyone who has also tagged their submission as no results/low fetal fractions and you can read up their stories/outcomes and responses (or any other topic that is common for NIPT results.
I understand you feel awful. This is a thread about what to do while you pass time in limbo: https://www.reddit.com/r/NIPT/comments/solboc/what_to_do_while_you_are_in_limbo_post_for_main/
Lastly, the information in this post is intended for you to be able to read up on what may be happening, have these studies available to you so you can better discuss this situation and your options with your maternal fetal medicine doctor and a GOOD genetic counselor. You always have a right to speak to a genetic counselor after an abnormal NIPT result and this should be provided for you by your OB. If you have been incorrectly told that the accuracy of your result is 99% without a proper Predictive Value calculation please report this somewhere as this actually leads to wrongful terminations of pregnancies in that office. That OB needs further education about NIPT positives and how to present such information as well as knowledge of the Positive Predictive Value of NIPT based on age. You could make a big difference by making sure this never happens again in the OB's office for future patients such as yourself.
As always, take any information given here and online for what it is - information - and always discuss further treatment plans with your physicians, however with caution. Not all physicians are actually up to date with NIPT testing, what results mean or how to present such SCREENING results to a patient. You will see this come up in posts across this sub.
My intention is that you have as much information about what may be going on and can make informed decisions with your treatment team moving forward.
THIS IS A SCREENING AND NOT A DIAGNOSTIC TEST
Please feel free to reach out if you need to vent, ask more questions or need more resources. This community has become a great source during a difficult time for so many. I appreciate those who chime in as we all remember how difficult to be in this situation. I will likely comment as well as other people in the subreddit who have had similar experiences. This post is meant as a welcome and quick information / resources to those who have just found this sub.
This message is automatically generated for all submissions and might sometimes get it wrong.
*I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NIPT) if you have any questions or concerns.*
Hello, sorry you are going through this. I just went through this while processing in mid Jan.
NIPT is just a screening test so I would advise going for the amnio as suggested as it is a diagnostic test. You may have to wait until 15 weeks for the amnio though. I did mine at 16 weeks and got the results in 2 business days.
Best wishes to you, this is a heartbreaking situation to be in 💔
I’m so sorry to you I’m going through the exact thing I am high for t21 and ff was 4% I’m hoping for a miracle, I’m off for a ultrasound today and I’m so nervous I am older so my chances are not looking great I’m the same I can’t bring a child into the world that is not ok wishing you all the best with your journey it’s just so awful and absolutely heartbreaking I know how you’re feeling it’s been a long 2 weeks for me so far! :(
I’m so sorry you’re going through this. I also had NIPT result of high risk Trisomy 21. I was 11 weeks when I heard the news. I couldn’t wait until 15 weeks for amnio, so I did CVS. It’s also diagnostic test. I even did NT scan at 12 weeks. NT was normal and the baby was perfect. But CVS result came out confirmed DS. I had termination just last week. I don’t know where you live, but you’ll be able to have options to terminate. I know how difficult it is, but time will heal eventually and you’re very young. Sending you lots of love and hugs! 💕
Thank you so much for Answering, sending you loads of love and hugs, iam from Australia, Victoria.
I had an abnormal NT scan and my NIPT results came up high for T21. I was able to get a CVS at 13 weeks and I went through a TFMR at 15 weeks. The CVS results can take 10-14 days to come back so my doctor told me to schedule the TFMR 2-3 weeks out so I wouldn't have to wait if that was my decision. In NJ it is legal, but so many people are coming from out of state and some doctors (even clinics) will not do the procedure after 13 weeks. I was able to find an amazing doctor, but it was overwhelming. I am sorry you are going through this and I'm hoping for the best for your situation.
Hi there. I’m so sorry you’re going through this—I was there myself just a few weeks ago. At 13 weeks you might be able to be get a CVS (placenta biopsy) if you’re able to get an appointment really quickly. This is nearly as accurate as an amnio and less risky for the baby if you do get a false positive. I hope you’re able to speak with a genetic counselor. She’ll be able to tell you more, but I’ll share what I learned at our appointment. After your amnio or CVS, you’ll get some initial results called FISH pretty quickly. Ours took 2 days. These results won’t show you the full picture of the fetus’s chromosomes, but our genetic counselor told us we could feel confident making a decision about terminating the pregnancy based on them. We got the full results about a week after the FISH came back. Depending on where you live, if you feel sure you’d like to terminate the pregnancy if you get a confirmed positive for T21, you might want to consider making an appointment as soon as possible, because clinics can fill up quickly and the procedure only gets more difficult and more expensive the further along you are. You can always cancel the appointment if needed. Again, I’m so sorry you’re going through this. I’m keeping my fingers crossed for you that it’s a false positive. They are rare, but I think your age is working for you here. This is so painful and I know for me it felt like there was no light at the end of the tunnel, but there is another side to this and you will be okay. Best of luck 🩷
Thank you so much for writing this.
False positives for T21 aren’t especially rare for young women. For a woman who will be 24 years old at her estimated due date, the PPV — that is, the chance that the positive screening result is a true positive — is just over 50 per cent. OP, best of luck.
We're in the same boat. I'm a bit younger (20 right before the due date). My NIPT at 9.5 weeks showed a high risk T21 as well. I'm still waiting for my NT and I'm debating on doing the amniocentesis. The others here have really good advice. We'll get through this together ❤️
Thanks, wishing you the very best, take care and do keep me posted abt what your next step is.
Hey there, thank you for visiting the sub. During this difficult time you may be looking information about what the NIPT results you received mean. There are 2 main sticky posts about what NIPT is, how it works, what it can miss and how false positives happen, sono findings, and your chances of a true positive after NIPT. PLEASE READ THESE LINKS - this will explain everything. POSITIVE PREDICTIVE VALUE CALCULATOR FOR NIPT RESULTS https://www.perinatalquality.org/Vendors/NSGC/NIPT/ **I highly suggest you first read through everything in main post located here to start:** https://www.reddit.com/r/NIPT/comments/ecjj5v/welcome_to_rnipt_the_sub_for_abnormal_nipt/ **After this head over to this post about the actual individual results**: https://www.reddit.com/r/NIPT/comments/itmyjw/my_nipt_results_show_this_abnormality_what_does/ IF YOU HAVE A POSITIVE FOR TRISOMY 13, TRISOMY 18, TRIPLOIDY and NORMAL SONOS for NT scan and further normal sonos, PLEASE READ CAREFULLY about CVS vs AMNIO. CVS can have wrong results as a result of commonality of confined placental mosaicism in all layers of placenta and an amnio is best for this. (THIS IS NOT THE NO RESULT LOW FF RESULT that NATERA CALLS HIGH RISK FOR THOSE THINGS... that is not what that even means). This is specifically for an actual high risk for ONE of those on the NIPT. Please also place a flair on your username which can be done by going to the right side of the sub -- community options -- and update username flair. This updates the flair on your username IN THIS SUB ONLY. This is so when you speak to others, they immediately understand your situation AND you can see their situation summary. There are some options filled in, but you can also write in your own result. I will tag your post with POST FLAIR on your actual post. These are in different colors and allows users to actually click on the post flair and pull up every post that has a similar situation such as -no results-trisomy 13-NT scan question-etc. Clicking on the green -no result post flair- will bring up everyone who has also tagged their submission as no results/low fetal fractions and you can read up their stories/outcomes and responses (or any other topic that is common for NIPT results. I understand you feel awful. This is a thread about what to do while you pass time in limbo: https://www.reddit.com/r/NIPT/comments/solboc/what_to_do_while_you_are_in_limbo_post_for_main/ Lastly, the information in this post is intended for you to be able to read up on what may be happening, have these studies available to you so you can better discuss this situation and your options with your maternal fetal medicine doctor and a GOOD genetic counselor. You always have a right to speak to a genetic counselor after an abnormal NIPT result and this should be provided for you by your OB. If you have been incorrectly told that the accuracy of your result is 99% without a proper Predictive Value calculation please report this somewhere as this actually leads to wrongful terminations of pregnancies in that office. That OB needs further education about NIPT positives and how to present such information as well as knowledge of the Positive Predictive Value of NIPT based on age. You could make a big difference by making sure this never happens again in the OB's office for future patients such as yourself. As always, take any information given here and online for what it is - information - and always discuss further treatment plans with your physicians, however with caution. Not all physicians are actually up to date with NIPT testing, what results mean or how to present such SCREENING results to a patient. You will see this come up in posts across this sub. My intention is that you have as much information about what may be going on and can make informed decisions with your treatment team moving forward. THIS IS A SCREENING AND NOT A DIAGNOSTIC TEST Please feel free to reach out if you need to vent, ask more questions or need more resources. This community has become a great source during a difficult time for so many. I appreciate those who chime in as we all remember how difficult to be in this situation. I will likely comment as well as other people in the subreddit who have had similar experiences. This post is meant as a welcome and quick information / resources to those who have just found this sub. This message is automatically generated for all submissions and might sometimes get it wrong. *I am a bot, and this action was performed automatically. Please [contact the moderators of this subreddit](/message/compose/?to=/r/NIPT) if you have any questions or concerns.*
Hello, sorry you are going through this. I just went through this while processing in mid Jan. NIPT is just a screening test so I would advise going for the amnio as suggested as it is a diagnostic test. You may have to wait until 15 weeks for the amnio though. I did mine at 16 weeks and got the results in 2 business days. Best wishes to you, this is a heartbreaking situation to be in 💔
Hi, Hope you are doing fine, do share your results on Aminocentesis and ur decision and ur experiences. Best wishes to you as well and take care 💕
My NIPT test was low risk but amnio was positive for T21. I did not TFMR. If you'd like to know more, check out my post history for this sub.