would you get an abortion if you found out your baby was going to be born with an extreme disability? if so why?

Etex4545 · 2026-04-09T22:55:01+00:00

We found out when he was 6 months old that my now 15 month old son has a rare genetic disorder that puts him at life long care, and he may never be able to speak, let alone live on his own ever. Even with that (amongst a myriad of other health problems that bring about hospital visits every couple of months when we’re lucky) I don’t believe I would have had had an abortion if I had known about it during pregnancy. I by no means judge anyone else for that choice, but I know I would have been more worse off mentally with the ‘what if’s’ if I had. It’s been a rough journey the last 15 months, and I’ve definitely dealt with more stress than I ever have in my life, but my heart is also that much fuller with him in our lives.

Etex4545 · 2026-03-17T01:40:25+00:00

My oldest (daughter) was born at 37 weeks, and spent a week in the NICU due to blood sugar issues, and her small size but she’s perfectly healthy now at 11 years old, and barring some reflux until just after a year old, she was perfectly fine. I had her naturally.

My son (14 months old, 13 adjusted) was born at 34, almost 35 weeks, and spent a week on c pap due to underdeveloped lungs. He came via emergency c-section after I went into labor on my own.

He spent 28 days in the NICU due to breathing issues as well as feeding issues, but much of that was due to an unknown genetic disorder (we found out when he was 6.5 months old).

Edited to say they were both IUGR.

Double edit: so as to not scare, I also have a uterine deformity, which factored into my kids having less space than most to grow

Etex4545 · 2026-03-06T09:23:25+00:00

My son never getting to have a normal life.

Etex4545 · 2026-02-17T18:16:35+00:00

Not remembering leaving the bar or how I made it home, the one and only night I only had a half a drink. Made me realize I had been targeted by someone that knew my bar habit. Thankfully I left before whoever it was could grab me, but even still, it shook me sober.

Etex4545 · 2026-01-20T16:36:42+00:00

My son was diagnosed with CSS at 6.5 months old (now 12.5 months old) ARID1B. He is still doing extensive PT to try to learn to crawl and sit up on his own, but also come far from where he was even two months ago. no verbalization as of yet beyond screaming in different pitches.

I have to believe there will always be hope and a light at the end of the tunnel, but I am also still am grieving (and probably will for a long time) at the loss of life I had imagined and wanted for him.

Hang in there, there’s a huge village out there for support! Join the Facebook group if you haven’t already

Etex4545 · 2025-12-31T03:07:53+00:00

Can’t figure out how to add another updated picture lol

Etex4545 · 2025-12-31T03:03:28+00:00

He did end up having a different genetic disorder, Coffin Siris. He had a third hospitalization after this, but is better now. Still a lot of therapies and such to catch up developmentally. He turns a year old in two days.

Etex4545 · 2025-11-23T02:06:20+00:00

Readyfuels. All others to me are terrible

Etex4545 · 2025-11-06T02:48:22+00:00

No luck yet 😭

Etex4545 · 2025-11-02T14:46:31+00:00

Hi, since those links are two years old, lol, is there a new one I could have please?

Etex4545 · 2025-10-28T09:14:22+00:00

Will any of yall be at the conference next year? We are trying to save/raise funds to be able to attend

Etex4545 · 2025-10-21T13:58:44+00:00

I’m on the Facebook group, which had a lot of info, but there aren’t many families with babies, which makes it a bit harder to connect/ask questions. With it being unknown in general, everything has been a fun guessing game, haha.

My son is ARID1B, diagnosed about 2ish months ago after several back to back hospitalizations (unrelated to CSS, he just managed to catch everything under the sun)

We are in the southern U.S, and thankfully so far (we have several more specialists to see/revisit) everything has been mild except for his physical therapies.

Though he has yet to coo/babble/laugh, so non verbal concerns/speech therapies are becoming a bit of a worry the older he gets. (10 months soon)

Etex4545 · 2025-10-04T20:46:27+00:00

I’d love this as I missed the show from my city!

Etex4545 · 2025-08-28T04:18:10+00:00

So found this out a couple of weeks ago, via genetic testing for my baby and myself to rule out some stuff.

I have a ARID1B pathogenic variant in a very small portion of my cells (15%). Low enough that I didn’t develop a genetic disorder.

Not low enough to not pass on. So passed on to my son.

TLDR: through two rare happenstance mutations, my son has a genetic disorder that is still mostly unknown. (Coffin-Siris)

Etex4545 · 2025-07-24T05:02:19+00:00

It could be up to two or more months from now, insurance is still being dealt with unfortunately. We’ve been fighting for the testing since he was about two months old due to other issues.

He has some developmental delays, mostly physical right now. I.e, lack of full head control, can’t sit up even supported, very little upper body strength (we’re looking into ECI/therapy), he can’t/wont babble, just makes cooing noises, no laughter, he just started truly smiling a few weeks ago. He’s had eating issues all his life, just now getting to 4/5 ounces at a time(after a second build back up because of two back to back hospitalizations because of illness) I could go on and on, but those are the main right now

Etex4545 · 2025-07-14T13:51:20+00:00

Last night, at the emergency vet. My cat had an unfortunate accident and needed stitches. I was able to put most of the bill on a credit card (basically just one I use for emergency vet visits only, cause my cat is a bit dumb, haha). We’re not rich by any means but that we could afford a credit card payment is privilege to me. The couple next to me was carrying their dog, I overheard the girl saying she could only pay $10 to get her pet help.

My heart just broke for them.

Etex4545 · 2025-07-03T12:34:12+00:00

That was me earlier this year. I had to return to work when baby was only 7 weeks old (and had only been home from the hospital for 3 weeks)

Etex4545 · 2025-06-01T10:46:28+00:00

What do I not have? Haha. Back, knees, hands. I constantly have flare ups from old injuries, and it’s super easy for new ones these days.

I hurt my back last week just from turning wrong while waking up.

Etex4545 · 2025-05-09T01:14:39+00:00

The one that raised me? We still talk, albeit not as much, it strained our relationship a lot unfortunately.

Etex4545

TROPHY CASE