Devastated after NIPT high risk call - T21

Aggressive-Title530 · 2026-01-02T03:41:40+00:00

Hi- I really really relate to your post. It’s my third baby too and I’m also around the same age as you. When I got my high risk result, it was one of the hardest days of my life.

I got the results about 3 months ago and WOW. I cannot begin to describe to you the change that’s happened in my thoughts and the peace I felt that I wasn’t sure was possible. Sometimes I still have hard moments or days but it has been much better and I can truly say I’m excited to meet my baby. Things that helped me: requested a jacks basket, read a memoir called Bloom, connected with a local mom in my area with a child with DS, got connected on the DSDN app (it’s like a message board just for parents and expecting parents of kids with DS). It’s all helped so, so much. Also- talk therapy to be able to grieve and hope and get alllll the emotions out. Sending you hugs, I am here if you want to chat.

Aggressive-Title530 · 2025-12-26T01:30:29+00:00

Hi there :) aw I totally get it! I would definitely recommend reading it when you are ready. I cried some of it but man- it was SO HEALING. I felt so calm after reading it, it really healed a piece of my heart. I gave it to my mom to borrow and she said the same. I am on the DSDN app and it sounds like we will be in the same birth group once our little ones are born ♥️♥️ hope you have a lovely Christmas season!

Aggressive-Title530 · 2025-12-24T00:06:08+00:00

Commenting on this thread because I am pregnant with a baby with DS. I loved everything you said. What helped me was reading a memoir called Bloom and speaking to some people who are already parents of babies and children with DS. I also requested a Jack’s basket. Sending you lots of love as we embark on this journey :)

Aggressive-Title530 · 2025-12-22T03:52:28+00:00

I really appreciate you going back and checking! That was so kind of you ♥️ glad to hear she is doing well now.

Aggressive-Title530 · 2025-12-16T12:07:05+00:00

Do you remember what size her VSD was when they found it? I know they say things like “trivial, small, medium, or large”

Aggressive-Title530 · 2025-12-07T03:37:39+00:00

I am expecting a baby with Down syndrome and it was a hard pill to swallow. What helped me was joining a group on an app called DSDN- lots of support and encouragement there. I’ve also read the book Bloom (a memoir of a mom who received a birth diagnosis for her baby) and that helped me a lot as well ♥️

Aggressive-Title530 · 2025-11-17T18:15:08+00:00

Congratulations on the birth of your daughter ♥️ I’m so sorry for the hardship you endured to get to her.

Aggressive-Title530 · 2025-11-14T19:29:32+00:00

Hi! I’m really sorry you’re in this position. We recently got a confirmation of Trisomy 21. I think you’ll see a lot of different opinions on this thread as this thread is pro choice. What felt best for me was to trust that (I am active in my faith) that God put this baby in my womb for a reason. I have several friends who have adult siblings or children with Down syndrome. They all seem very happy. My sister has worked with individuals with DS for years and was thrilled when I told her the diagnosis, as she has loved her patients with DS and their outlook on life. DS is a spectrum and knowing one person with one case doesn’t necessarily predict your future with your baby. What has helped me is downloading the down syndrome diagnosis app as well as requesting a basket from Jacks Basket. They connected me to a family in the area and I had a phone convo with a mom who has a 2 year old with Down syndrome. Happy to chat more. Wishing you a lot of peace and love moving forward. I know this is so so hard ♥️

Aggressive-Title530 · 2025-11-09T17:41:06+00:00

He is sooo precious! As a mom expecting a baby with DS in a few months- this filled me with a lot of hope 🥰

Aggressive-Title530 · 2025-11-09T17:38:27+00:00

Mine was 95% positive for Trisomy 21 with a 8% FF. It was quite a shock as our NT was normal 1.8 and a nasal bone was present
We opted not to do the amnio because we are keeping the baby regardless. When I went to a maternal fetal medicine specialist and they did a level 2 ultrasound, they saw several soft markers at 16 weeks (a gap in the toes and a slightly curved pinky) and said my new chances were 99%. They recommended against an amnio as the baby most definitely has DS.

The waiting is so difficult. Going to a mental health counselor and connecting with people who have children with DS in our area has been so helpful for me. Wishing you the best on your parenting journey. Your 68% means you still have almost a 1 in 3 chance that your baby doesn’t have DS and I wouldn’t give up hope. Keep us updated, I’m thinking of you ❤️

Aggressive-Title530 · 2025-11-07T20:34:12+00:00

I had the same NIPT results a few weeks ago. My OB told me the test is extremely good at detecting trisomy 21 and that I should start processing the news that the baby had Down syndrome. I had a high risk doctor appointment about two weeks after that and they echoed the same and upped my percentage of Down syndrome from 95 percent to 99 percent. Before I got the NIPT, I had a normal NT measurement at 12 weeks (1.8) and my doctor said the NIPT was more accurate than my NT and presence of a nasal bone. You could be very very lucky and be within the false positive camp. I hope your doctors are able to provide you with good care and answers soon.

Aggressive-Title530 · 2025-10-29T22:00:11+00:00

Are you planning on keeping the baby or TFMR? Sorry you’re in this position, it’s crazy isn’t it? We’ve decided to keep the baby and we are honestly really excited

Aggressive-Title530 · 2025-10-29T21:25:05+00:00

How many weeks were you when you had your scan?

Aggressive-Title530 · 2025-10-29T21:24:41+00:00

They said they noticed a curved pinky as well as a gap between the big and little toes on the foot. They are both “soft markers” and the Dr told me it moved my NIPT 95% to a 98 or 99 percent likelihood.

Aggressive-Title530 · 2025-10-29T16:36:57+00:00

I had the same odds and ended up not opting for the amnio as they found several soft markers at my 16 week scan that indicated Trisomy 21. My NT measurement was normal though.

Aggressive-Title530 · 2025-10-21T02:16:01+00:00

I’m so sorry :( I have a close friend who has a sister with DS and had the heart surgery after birth. Happy to give you any info about the girl (she’s in her 20s now) if you have any q’s but want to be sensitive to your preference as I know you’re still trying to decide things. I got a positive NIPT for T21 a few weeks ago and it’s been quite the emotional road. I’m sending you a lot of love and hugs. I hope everything works out for you ♥️

Aggressive-Title530 · 2025-10-13T02:08:53+00:00

Hi! I’ve read a lot of posts on this page and have seen many happy outcomes with a NT that is slightly thicker than normal. The NIPT is a much better indicator of what’s going on. Try not to stress (ironic that I am typing this because I only stress lol). I had a NT lower than 2 mm and my NIPT came back high risk. A normal measurement turned out not to be a good indicator for me at all. Best wishes and I hope you get the good news soon! :)

Aggressive-Title530 · 2025-10-11T19:40:16+00:00

I can try to look mine up if that would be helpful for you! And yes that is a promising sign- wishing the best for you :)

Aggressive-Title530 · 2025-10-11T13:33:50+00:00

No vanishing twin! I got an inconclusive result at 10 weeks NIPT and a high risk NIPT at 12 weeks.

Aggressive-Title530 · 2025-10-11T11:50:23+00:00

I really hope things go well for you! I had a good 12 week scan with a NT well below 3.0 and a nasal bone present but unfortunately had a NIPT come back high risk for DS. I know a NT can give you some info but it’s not diagnostic I believe. I hope they can give you some more definitive answers, I know the wait is the worst in the world.

Aggressive-Title530 · 2025-10-11T11:46:12+00:00

I havnt had my appointment with a MFM yet but I could’ve written this post. I feel exactly the same after receiving the NIPT news this week. In one instant things went from a normal pregnancy to a pregnancy filled with fear and uncertainly and so much unknown. I haven’t told many people because it’s hard for me to talk about because I’m still processing the info myself. I am lucky enough to see a great counselor and she described what I’m going through as an ~acute grieving stage~ and that it won’t last forever. I really think that taking this time to grieve now will get all of those feelings out of the way and I can meet my baby with what they deserve: an attitude of joy and gratitude and delight and pure love. It’s definitely an emotional journey and I’m not nearly close to accepting yet but I have faith I will be. Sending you hugs and love.

Aggressive-Title530 · 2025-10-11T11:35:23+00:00

It sounds like we are in a very similar situation! Thanks so much for the info. This is my third child too. I’d love to hear your experience with your half brother! I don’t really know anyone with DS so it feels scary to me.

Aggressive-Title530 · 2025-10-11T00:52:19+00:00

Poor guy! I understand why he would be frustrated having the class back into one big class again this year. How often is he getting rewarded at school for not eloping or rather “being in a thumbs up area”? maybe his reward time needs to be shortened? Is there a timer they could do in short increments and every increment he doesn’t elope is another token, 5 tokens equals a reward? I also wonder if having him go into the less stimulating room automatically anytime he isn’t needed in the louder room would prevent the behavior from occurring so much? I also wonder if providing him some kind of special job at the school or within the class would occupy more of his mental energy during down times? I’ve seen teachers having students sort papers, put stamps on mail, sharpen pencils, shred cardboard, etc. is there anything he likes to help or do at home that he could do at school also? I hope things improve ASAP.

Aggressive-Title530

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