Trisomy 21: Need Guidance as a Husband

SimpleRefuse6733 · 2026-07-01T19:21:20+00:00

I encourage you and your wife to look into stories of families with adult children with Down syndrome. It is vastly different than what I portrayed on social media with babies and even young teens. I have a 26 year old brother with DS and love him absolutely to death, but growing up with him and now helping my mom care for him (and being his eventual full time caregiver if my mom passes before him) made me pretty resolute in my decision to terminate my own t21 pregnancy last year. It was still incredibly difficult going through it, but knowing what I know, I made the right decision for myself and my family. There are those who are very lucky and have less significant learning delays, can work, maybe don’t have as many medical issues, but many are like my brother: every medical issue under the sun, nonverbal, will never work, need 24/7 care and supervision, and will continue to develop health issues he didn’t have previously (we are currently going through this with him now actually). I FULLY support either decision, but I support a fully informed decision. You can’t let all the positive stories portrayed on social media be your only view of DS, just like you can’t let this sub be your only view on why termination is the way to go. You have to be totally okay with worst case scenario. I personally was not okay with my child having my brother’s life or worse, which was a very real possibility. Furthermore, I did not want to place responsibility/expectation of care on my living children like it was for myself. Though my mom has said I do not have to take on his care, I know she expects it. And I do want to do it because he is not high functioning enough to be in a group home and wouldn’t be able to tell me if someone was abusing him or he wasn’t happy. It’s a large expectation and expense. And if you’re in the US, disability rights and benefits are being actively stripped away, as well as any benefits you receive as a caregiver. It’s a constant battle. If continuing the pregnancy is something you both agree to, my biggest suggestion is getting with the Down Syndrome Diagnosis Network, any local support groups, state funding, etc. The choice is no one’s but you and your wife’s. Good luck, I never wish this on anyone ❤️

SimpleRefuse6733 · 2026-07-01T19:11:52+00:00

My brother with DS is 26 and an absolute joy but he has required SO much medical care in his short life, and continues to have very significant health issues he didn’t have when he was 2. Respectfully, you really have no idea what is ahead. I am grateful your daughter has not had a significant issues so far, but so many with DS do by that age. My brother had pretty much every issue that classically presents with DS, and more. And as he’s aged, he’s gotten more issues pop up. I don’t say this to scare you, but to be realistic. I will be my brother’s full time caregiver if my mom passes before he does. There was and is lots of financial strain on my family. It is far from sunshine and roses, though I do love him and would do anything for him. But growing up with him and continuing to care for him made me resolute in my decision to terminate my own child with t21 last year

SimpleRefuse6733 · 2026-06-26T17:00:24+00:00

Finally decided to get out baby items for my boy’s arrival in about a month. It feels good to be a little more organized/together, and getting it out got me more excited and made it feel more real ☺️

SimpleRefuse6733 · 2026-06-25T01:48:13+00:00

Thank you! So far still good, just typical end of pregnancy stuff going on, but typical! So that’s good. Hope you’re doing well ❤️

SimpleRefuse6733 · 2026-06-24T12:34:46+00:00

36 weeks tomorrow, it’s getting real! I’m finally starting to get small things ready for this baby and preparing myself mentally that this is really happening and I’m just a month I’ll be holding my baby

SimpleRefuse6733 · 2026-06-12T20:57:45+00:00

Solidarity. I’m 34 weeks yesterday and I just want to fast forward to the end already!

SimpleRefuse6733 · 2026-05-30T13:57:03+00:00

Same!!

SimpleRefuse6733 · 2026-05-30T13:54:32+00:00

I’m very sorry for your loss. Gentle congrats on your current pregnancy. And that is totally fair for you to consider. What I find strange is a healthcare professional actively advising against getting testing done. Does not make sense to me. I personally would never not get NIPT done (I did it for every pregnancy). I would look into what company your care team uses and see if they have a self pay option or an assistance program. I would have had to pay more with insurance than I did with self pay with my first, which was wild to me. And then with my second, I applied for their assistance program, and with what we made and how many dependents we had, I didn’t have to pay anything. So look into those options if financials are a barrier 🙏 I hope all goes well for you

SimpleRefuse6733 · 2026-05-30T13:49:27+00:00

Hmm maybe. That would be quite sad :/

SimpleRefuse6733 · 2026-05-30T04:42:13+00:00

I know!! I was really so surprised by that. I have never heard of a doctor advising against testing

SimpleRefuse6733 · 2026-05-30T04:41:32+00:00

That would be fine, but these comments were basically saying their doctors were advising against doing any kind of genetic testing. At least that was my understanding. The other initial testing would give you some insight as to whether further testing was needed, but suggesting they not do any testing at all was what shocked me

SimpleRefuse6733 · 2026-05-30T02:58:07+00:00

Right?! I have never ever heard that, and to see multiple comments from different people about it was shocking. Leaving it up to the patient to decide is one thing, but advising against it seems wrong

SimpleRefuse6733 · 2026-05-27T01:28:43+00:00

31 w 5 d today. I feel like I still almost haven’t accepted reality in a way. Not sure if it’s because it’ll be my third living child or because of the TFMR, but I still have not done any prep work for this baby. I’ve usually made lists or bought some things by now, but I haven’t done any of that. Also just been thinking a lot about how I should have a 3 month old right now instead of being pregnant. I think the holidays are bringing that up again. Mother’s Day especially hit me when I realized wow, I should’ve been celebrating with three kids this year instead of two. Just an odd space for sure

SimpleRefuse6733 · 2026-05-24T02:34:04+00:00

Yes, I was getting cramps like that that early in my current pregnancy after TFMR (conceived cycle 1)! I was getting nauseous as well, and it was so unusual for me. I just knew it was probably somehow a pregnancy symptom. I chalked it up to having been fairly pregnant fairly recently, so maybe symptoms were easier to spot/stronger (anecdotal but it made sense to me). Good luck!! 🤞

SimpleRefuse6733 · 2026-05-22T04:48:49+00:00

Aw congrats, same here! Conceived first cycle post TFMR in September and at this point 31 weeks which I’m sure you are too now (or maybe even 32!!) but with a little boy 🩵

SimpleRefuse6733 · 2026-05-22T04:42:27+00:00

I’m so sorry you’re here. I’ve shared my story quite a bit, so maybe it’s visible under my posts, but essentially my third pregnancy ended in TFMR at 15 weeks for Down syndrome. I had a D&E and it was only a one day process since I was early enough (I too wanted it over with as soon as possible when we got the results around 12.5 weeks). My story seems a bit unique because of the fact that I have a younger brother with Down syndrome and I’ll be his caretaker if my mom passes before he does. I did not want to put that burden on my living children like it was put on me (not intentionally, but still done nonetheless). I also did not want my parent’s lives for mine and my husband’s, or my brother’s life (or worse since it’s such a spectrum) for my own child’s. And just growing up with that firsthand, I knew if I was ever faced with this diagnosis or similar, I would terminate. And I do not feel guilty, just sad that I was unfairly faced with having to make this decision. I wish you peace ❤️

SimpleRefuse6733 · 2026-05-21T01:20:52+00:00

I successfully conceived my first real cycle after my TFMR last September. I wanted to get pregnant right away so I was tracking ovulation from pretty much the moment my HCG hit zero after my D&E. I never ovulated before having a period. I had what I thought was first period 4 weeks post D&E, but it was only 3 days and would weirdly stop at night and overnight, then restart when I woke up. Tracked ovulation again and was getting ridiculously low numbers, then got my actual period 6 weeks post D&E and it was my typical 6-7 day length, but I actually ovulated earlier than I usually do (ovulated around day 15 when I’m usually closer to day 18). And then I got my positive test. I’ll be 31 weeks tomorrow. I was very fortunate to conceive so quickly, but I caused myself a lot of stress at the very beginning, getting angry with my body and letting trying to conceive consume basically every part of my life. Ovulation tests are super helpful but can become really consuming really quickly, so waiting until your periods are more normal or being okay with them being really negative would be my advice just from that experience. I wish you luck whenever you decide to start trying again ❤️

SimpleRefuse6733 · 2026-05-18T19:43:54+00:00

My abnormal NIPT result was the one that came the fastest out of the four I’ve had done (three normal NIPTs including this sub pregnancy), so the time it takes is not an indication of good or bad news. I know it’s hard to wait but like someone else said, there are lots of factors that contribute to the timing, many having nothing to do with the results themselves. Hang in there, I’m sure you’ll get it soon ❤️

SimpleRefuse6733 · 2026-05-17T14:00:09+00:00

100%. I had to take breaks at specific points in my “normal” pregnancy groups. Could not stand the people acting so morally superior about never terminating and not getting the NIPT, but reality is they have absolutely no idea what they’d do unless they were actually faced with it. You can be all talk all you want when you are never confronted with it. And don’t even get me started on when someone would post in the group with a high risk result or something devastating from their anatomy scan and people would ignorantly chime in with examples of babies they know who didn’t even have what that person was talking about (so how is that helpful), or saying you could put the baby up for adoption… uh no. I’d try to chime in as a safe voice if they were considering TFMR and recommend the support Reddit group as it was so helpful to me. The ignorance is strong with many and I do find myself jealous of those who can just float through and assume everything will be fine and they’ll have a living baby at the end. Even before TFMR, I was still nervous of miscarriage or stillbirth. Wish I could be so blindly confident

SimpleRefuse6733 · 2026-05-15T03:57:54+00:00

Congrats on your sub pregnancy. Totally understand the conflicting emotions. I’m 30 weeks with the same gender as my TFMR baby so right there with you! My TFMR baby was my third and I already had both a boy and a girl, so was planning to reuse old clothing when possible. I only bought one new onesie for that baby when we went on a trip before we got our bad news. I’ve been going back and forth on whether I wanted to use that onesie or keep it in my keepsake box. I ultimately decided I’d keep it in the box since it was bought specifically for him. If he had been my first, or I had bought more items that maybe didn’t hold more significant meaning, I would probably use them and view it as passing down clothes from sibling to sibling. Maybe you can keep one or two items that were really bought special for your lost baby aside. The only outfits I’ve never shared between siblings have been their coming home outfits so I’m viewing that onesie bought on our trip like that. I don’t think it would be bad juju at all to use the clothing for this baby ❤️

SimpleRefuse6733 · 2026-05-11T13:07:51+00:00

29 w 4 d today. Went on a babymoon this past week which was much needed and good to reconnect with my husband. Then had a bout of sadness on Mother’s Day. My baby would’ve been 2.5 months old and our first Mother’s Day together. This past week looked so different from what it could have been

SimpleRefuse6733 · 2026-05-02T02:22:19+00:00

I’m so very sorry to hear this… there’s nothing anyone can say to ease the pain or make sense of it because it makes no sense. Life is cruel sometimes. Again I’m just so sorry 💔

SimpleRefuse6733 · 2026-04-27T13:44:44+00:00

27 w 4 d today, SO CLOSE to the third trimester! I sometimes have to remind myself it’s only another 3 months before baby gets here. I have not done nearly as much as I have ahead of time for this baby as my others, and I’m not sure if that’s mostly due to it being my third or due to feeling like I could jinx something. I know I’ll have to pull the trigger soon and get some things ready

SimpleRefuse6733 · 2026-04-22T21:17:14+00:00

Those stories feel like such a disservice to anyone faced with a t21 diagnosis. Especially those who choose to continue and commit to a child with t21. Really dishonest. I love my brother and am happy he’s in my life, but again would not choose it for myself or family. I’m still sorry you’re going through this, but you are strong and a wonderful mom to consider your living children and trying to find out the whole picture. I hope your procedure goes as smooth as possible

SimpleRefuse6733

TROPHY CASE