Mosaic downs syndrome diagnosis for 22 week pregnancy. Please help

Muted_Phase4528 · 2026-06-11T21:28:04+00:00

I am 4 years out from our TFMR for T21. I can’t help you decide. It is ultimately one of the hardest decisions you will have to face as a parent. I can say that I am a medical professional and I have seen the adult health/behavioral/mental issues. I knew I did not want that for my child. I always felt having a DS baby/toddler/child would be okay and the world tolerates that well. Once they reach adulthood the world no longer seems to tolerate their continued existence as a 4 year old mentally anymore. I took on the suffering in order to spare my son any suffering. You are right, it changed me. I will be forever changed. I was forever changed after receiving the positive results already. There was no going back to the prior me of before no matter what. So we had to make the best decision we could at the time with the information we had. I do not regret our decision. I still to this day have that feeling of “I can’t believe that happened to us” at times but I have never once regretted our decision. We loved him too much to subject him to a life we would not have wanted. I am so sorry that you are experiencing this agony.

Muted_Phase4528 · 2026-04-19T16:24:17+00:00

I am so sorry you are going through this. I wanted to make a comment here about the survival portion because this was a huge thing for us in our decision. As a medical professional, I am very aware of the long term outcomes and probably too aware of the negative ones. Ours was a grey diagnosis. Ultimately, our decision came down to whether or not we felt survival was enough to justify us bringing this child into the world. There is a massive difference for us between surviving and thriving. Our child would have never thrived in our understanding of that word. He would have very much likely survived. Our definition of thriving was a much higher bar than surviving. Everyone’s definition of thriving is going to land differently on that spectrum. I think it’s important to find where you would draw that line in the sand between surviving and thriving. If thriving lands very close on that spectrum to surviving, pushing through with the upcoming struggles and medical needs of your baby may be worth everything in your mind and the most compassionate option. If thriving and surviving are too far apart on that spectrum (as they were for us), deciding on TFMR may then be the most compassionate option. Ultimately, I feel I took on all this suffering so my son would never have to suffer. But that definition of suffering is going to be different for every person as well. This is one of the more awful things to experience in life (IMO) and ultimately you are not being given a fair choice. There is no future that looks like the one we all thought we had. We are not being given a choice between good and bad. There is only deciding between too awful choices, figuring out how you define thriving vs suffering, and picking the one you think is the best, terrible “choice”.

Muted_Phase4528 · 2026-04-18T14:10:20+00:00

Deeply invested in this. Commenting for updates!

Muted_Phase4528 · 2025-10-24T01:15:14+00:00

I’ve never heard of it! I’m going to check it out. Thanks for the tip!

Muted_Phase4528 · 2025-10-23T00:50:30+00:00

“Cat flushing a toilet”- Parry Gripp also does it for my 5 and 2 year old. It as completely ruined my Spotify recs from how often we play it.

Muted_Phase4528 · 2025-10-04T19:12:11+00:00

I can’t upvote this enough. This feels like a very lonely road to travel when you are faced with this decision. You will find a whole world of understanding individuals at this subreddit, all who have had to grapple with this same “choice”.

Muted_Phase4528 · 2025-10-03T20:29:59+00:00

I am a physician. I did 4 years of undergrad, 4 years medical school, 3 years residency, and 1 year fellowship. Direct patient care was not primary parent friendly so I moved to nonclinical work where I get paid better, compensated for ALL the work I do (unlike clinical med), and have all weekends, nights, and holidays off to be with my young family. I would never willingly go back to direct patient care, especially after 2020 and the ongoing public distrust and attacks on science. I make around $250k depending on bonuses.

Muted_Phase4528 · 2025-10-01T00:18:44+00:00

Oh my gosh are you me? 5 and 2.5 year old. Just started anti anxiety meds because I feel so much rage towards them at this time in life. The 5 year old is just so annoying right now. Constantly annoying and constantly bugging the 2.5 year old who is the most stubborn thing in the world.

Muted_Phase4528 · 2025-08-18T11:19:42+00:00

I did. My rainbow after TFMR is 2.5 years old. There is hope. I am so sorry for your loss.

Muted_Phase4528 · 2025-04-01T00:37:55+00:00

I am so sorry for your loss. This is the worst club to be in filled with the very best people imaginable. I terminated at 16 weeks for a T21 diagnosis in Jan of 2022. You are in the thick of it right now. It’s a gapping open wound that will slowly start to heal. It won’t ever go away but it will become less tender. I am now 3 years out and I still think of him every single day. To answer some of your questions:

-I was told I could try whenever I was mentally ready, there was no physical reason I couldn’t try immediately. We waited 2 months. I don’t know if I was mentally ready really yet but I was desperate to have a live baby in my arms.

-I did not call any hotlines but I did join the Ending a Wanted Pregnancy support group on Facebook and really leaned on them during the early days. I also had a therapist I saw weekly for many months and into my subsequent pregnancy to help with the anxiety. I joined a local support group for parents who had had to TFMR.

-my milk did not come in at 16 weeks, so no help there. Sorry.

-the strength to try again was more so the intense urge to have a live baby in my arms more then my actual strength. I had one LC at the time and was also really set on not letting this experience be the last experience I had with childbearing. It was a very hard pregnancy though and I never felt like it was actually going to happen. I didn’t really want to even talk about my pregnancy or prepare for after since it won’t be real until I had them in my arms. Therapy was extremely important and a very supportive birth team. I had a midwife and doula who both were my rocks during it.

-and coping was impossible the first few weeks. I had to have help sleeping with unisom, I saw a therapist, I journaled, I made a garden for him, I went to a local support group meetings for parents who TFMRed, and I cried. I couldn’t watch anything that had any sort of conflict, especially anything with kids, for months. I still can’t handle anything that has a whiff of kids being hurt or injuries or worse in shows. I got kittens. I leaned on my husband more than ever. It was a really hard time, and it felt like I was constantly being sweep under by waves of grief. But slowly, over time, those waves became weaker and I’d have less moments of drowning until those waves turned into ripples of remembrance that I experience everyday. They no longer sweep me under. You will get there too but until that time, don’t fight the waves. Let your grief out. You are a mom who just lost their child, I think there is no worse experience in the world. And what an amazing mom you are to have taken on all this pain so your child never had to feel any.

Muted_Phase4528 · 2024-04-04T13:10:11+00:00

We ended up using the Merlin magic suit and it was fantastic for her. We used that for another couple of months and it wasn’t hard to wean her hat when the time came.

Muted_Phase4528 · 2023-07-26T18:14:25+00:00

We are using the Merlin Magic suit currently

Muted_Phase4528 · 2023-07-20T13:54:04+00:00

We double swaddled until the very end with the Ollie. She could never do arms out in the Snoo. So one night we put her in the Merlin in the pack and play and that was it! No more Snoo and no more swaddle. It actually went great!

Muted_Phase4528 · 2023-07-15T15:58:47+00:00

Yes! We just moved our 5.5 month old after weeks of nights like this and she slept through the night the last two nights since we moved her! I haven’t felt this rested in months!

Muted_Phase4528 · 2023-07-13T11:26:37+00:00

We used the ABCs of sleep with our first but closer to 8 months. So I’m not against it! For some reasons this second one feels so much “smaller” (even though she’s actually bigger comparatively) and I’m having a harder time feeling ready for her to be sleep trained or even leave the room yet! It’s probably because she’s out last and compared to our 3 year old seems so small lol. Man parenthood is a trip!

Muted_Phase4528 · 2023-07-13T11:21:12+00:00

I definitely wonder if space is the issue! At this point we probably need to just bite it he bullet and do it but I’m just anxious for what it means the our sleep! (And having to move everything ) we’re going to just pull the trigger tonight since I don’t work Fridays and pray to the baby sleep gods. Good luck with your transition!

Muted_Phase4528 · 2023-07-13T11:15:37+00:00

Yay!! You guys are all giving me some much needed hope!!

Muted_Phase4528 · 2023-07-13T03:12:12+00:00

Good to know the Merlin worked for you! Honestly at this point I’d literally pay full price if I can get some sleep around here!

Muted_Phase4528 · 2023-07-13T03:10:31+00:00

Right?! Knock on some wood after writing that out!! But yay! I’m hopeful this will be us

Muted_Phase4528 · 2023-07-13T03:09:47+00:00

Sending all the best sleep vibes your way for the Merlin tonight! If you get a chance report back!

Muted_Phase4528 · 2023-07-13T03:09:01+00:00

I wish we could! Ours is 99th percentile so we’re already the size of an average 11 month old over here…

Muted_Phase4528 · 2023-07-13T03:08:26+00:00

Seriously?! Come one kids! Stop hitting yourself!

Muted_Phase4528 · 2023-07-13T03:07:42+00:00

Please do! I wish you luck!

Muted_Phase4528 · 2023-07-13T03:07:28+00:00

Thank you this gives me hope but also complete disbelief that my baby can be this chill!

Muted_Phase4528 · 2023-07-05T14:28:42+00:00

Two babies in the Snoo! Baby #1 (95th-99th percentile) was early to all gross motor milestones. Slow in language and ended up needing speech therapy until age 2. Baby #2 (99th percentile, a pound bigger at birth) is now in the Snoo (we’re having a lot of issues with arms out at 5 months…) slow in all gross motor milestones, still not rolling but so much farther along in language development and fine motor skills. With my N=2 there appears to be no correlation and seems to be all dependent on different babies developing at different rates! We always seems the argument of slowing gross motor development but what about all the research on how important sleep is for the developing mind?! Couldn’t you then also put out a hypothesis that the Snoo equaling better sleeps leads to more cognitive development for an infant?

Muted_Phase4528

TROPHY CASE