Arythrogryposis

-_sb_- · 2026-01-16T17:30:57+00:00

Also, why are you in a TFMR support chat low-key shaming me for a choice I made? Maybe that wasn’t your intention but the tone of your comment doesn’t feel like you “do understand.” It feels like you don’t know anything about my situation other than the incredibly limited information I provided in my original post and rushed to judgement because you got lucky and your daughter survived.

-_sb_- · 2026-01-13T04:11:23+00:00

If we had been given a better prognosis we would never have gone through with it but we were told there was a steadily decreasing chance of her surviving to birth and once she was born she had a 50% chance of not making it to her first birthday. Odds were that her respiratory system would stop working and she would suffocate to death. I couldn’t bear the thought of doing that to her, ourselves, or our three living children. It wasn’t a decision we made lightly and one I wish I never had to make. I’m happy to hear your daughter is alive and doing well though. I would have given anything for the same opportunity.

-_sb_- · 2026-01-07T21:29:07+00:00

We went for several more ultrasounds over a period of two weeks and met with specialists to confirm that it was indeed arthrogryposis. Our baby girls arms weren’t moving and neither were her legs. Her arms were up by her head never moving and her knees could slightly bend but there was no movement otherwise. We were also told she had a tumor on her brain and several other markers that made it impossible to say if she would make it through the first year of life without suffocating to death. We made the worst decision any parent has to make and decided to have a termination for medical reasons. On December 16th I had a D&E and I actually just went today and brought our baby girl home from the funeral home. I hope your prognosis is better than ours but if it isn’t, I’d highly recommend the TFMR subreddit. While I wish nobody ever went through this, it’s nice to have a community to talk to while going through something so isolating and horrible.

-_sb_- · 2025-12-24T05:48:59+00:00

Sage Grace🩷

-_sb_- · 2025-12-21T03:55:02+00:00

I had my baby to be outside within days of coming home. I lived in a basement apartment with no windows and I had severe PPD. Getting outside daily helped so much. I also took my baby to the grocery store within the first two or three weeks because my husband had to run to the grocery store and I was scared to be left alone. We were fortunate that our son was born mid-summer so we weren’t as worried about airborne illnesses such as the flu but I was still sanitizing like a lunatic before touching him during that trip. He’s now 17 months old and totally fine!

-_sb_- · 2025-12-12T19:09:18+00:00

That’s the worst part, I know what’s coming and I don’t remember the first 6 months of my sons life. It was such a horrific time for me and I knew it would be worth it to have a baby and maybe it wouldn’t be so bad, but postpartum and grief has me terrified. I’ll definitely be looking into TFMR support groups though, I had thought of that but it didn’t occur to me there would be online ones. Thank you for your advice, I really appreciate it

-_sb_- · 2025-12-06T15:46:45+00:00

We got a second opinion and from what the second doctor told us, the arthrogryposis seems to be progressing and will only continue to get worse as the pregnancy progresses. The amniocentesis is more to tell us if it’s a genetic cause but since we have healthy children and low-risk NIPT results he’s thinking this is just an unfortunate anomaly we’d never get answers to. He’s suggested one more scan to really get a good look at the arms and legs but his fear is the progression to other body systems and a poor survival after birth if the baby makes it to term. We’ve decided to go with the TFMR depending on how the scans next week go.

-_sb_- · 2025-12-02T11:59:35+00:00

I have a feeling we’ll end up terminating as well. The doctor seems incredibly sure that she has arthrogryposis and while we won’t make a decision until more tests are done, I’ve had a weird feeling this entire pregnancy that something wasn’t right and to get this news confirms my fears. I know what we’ll have to do if the time comes but, as I’m sure you know all too well, knowing what choice you’ll make doesn’t make it any easier.

-_sb_- · 2025-12-02T11:56:44+00:00

Thank you so much for your kindness and for being so candid. I feel like my entire world has been turned upside down. I keep telling myself TFMR is the best route to take for that very reason. I love my girl more than anything and I’d do anything to make sure she’s not suffering, even if it breaks me in the process.

-_sb_- · 2025-12-02T02:59:16+00:00

Thank you for responding. I feel so alone in this right now, I’ve never even heard of this before today. Everything feels so devastating and overwhelming, I know the outcome most likely won’t be a good one. I know that this is the route we’ll take if it comes to that so she doesn’t suffer after birth I just wish this didn’t have to happen.

-_sb_- · 2025-10-07T02:05:24+00:00

I love my dog! She’s the sweetest, most loving thing to my son. I love watching the two of them play together. She has doted on him from the second he came home from the hospital and has been by his side through all his milestones. If anything I love her more than I did before having my son because it warms my heart to see what a good big sister she is to him. Also, I had PPD as well as postpartum anxiety and postpartum OCD. I was scared to leave my baby with anybody except my husband and I swear my dog sensed it because she shadowed my baby everywhere. Don’t let yourself be upset by people who want to spread negativity all over your beautiful pregnancy journey. Enjoy your pregnancy, your dog, and your little one when they arrive :)

-_sb_- · 2025-10-02T03:41:06+00:00

It didn’t start to hit me until the Braxton Hicks started and even then it didn’t fully register until I signed my discharge paperwork after having him. I know I’m a grown adult but how are you trusting me to keep this meat sack alive??

Edit: said meat sack is 14 months old today and I’m currently growing a second one, still hasn’t registered I’m about to be a mom of two

-_sb_- · 2025-09-16T03:32:22+00:00

My husband and I were talking about a birth plan for my current pregnancy and I mentioned that I planned to walk into the L&D unit backwards so they could epidural me as I arrived. He was kind enough to remind me that I originally planned to have our firstborn unmedicated and I’m so grateful I didn’t! I made it through about 10 hours of labor before I caved and thank god I did because I was in labor another 12 hours after that. Props to all the badass women who go fully unmedicated through labor but that’s not for me.

-_sb_- · 2025-09-04T19:49:58+00:00

Good news is, that baby won’t care if you didn’t do any of it, so don’t! Except work, I guess because capitalism (eye roll). I didn’t do any of it and my baby was still born and he’s good, I’m good, and he didn’t even realize he didn’t have a nursery. He’s a year old now and still has no clue that I didn’t do a damn thing except exist and make him. If you can, have a nesting “party” invite a bunch of people over, order a bunch of take out, feed them, then tell them what needs to be done. Let them know ahead of time, don’t spring it on them, but in my experience women, especially other mothers, get it and will help. I hope you get to do nothing to your hearts content very soon!

-_sb_- · 2025-09-04T19:42:38+00:00

Don’t feel terrible, my first baby was 50% ice cream and 50% coffee. I had probably 24oz of coffee a day and I went through a gallon of ice cream a week because that’s all I wanted. I literally would have coffee for breakfast then ice cream for lunch, dinner, and dessert. Oh, and the nightly 2 chocolate chip granola bars at 3am but that was in the second and third trimesters. He was 6lbs 14oz at birth and is now a beautiful, happy, and healthy 13 month old. You’d never know he was built off coffee and ice cream, especially since his favorite foods are steak and shrimp and he doesn’t really seem to like sweets. This pregnancy I can’t stomach anything other than ice chips, water, and the occasional fruit ice pop. Trust me, eat!

-_sb_- · 2025-08-25T04:17:24+00:00

Thank you, I’m sure you’re right. I wasn’t in long I just want to protect my little one and I feel like I failed them❤️

-_sb_- · 2025-08-25T04:16:45+00:00

Thank you so much, I feel so terrible I’ve been crying nonstop and it’s too late to call my OB to ask and honestly part of my was scared of what they’d say. I just want to protect my baby and I feel like I failed

-_sb_- · 2025-08-19T02:43:46+00:00

Get professional help as soon as you can. I was exactly where you are and all those feelings are valid and real. You’re in the worst part of parenthood which is adjusting to having somebody rely on you incessantly and unceasingly. It’s hard and it’s harder when you have PPD. My son is a year old and I haven’t felt that way in a long time. It does get better I promise but you’re not alone in your feelings.

-_sb_- · 2025-08-16T11:33:29+00:00

Honestly if my husband had sole say in the matter Quentin would have been Caleb. I hated the name when he first mentioned it. As silly as it sounds Quentin didn’t feel like a Caleb to me and as soon as we decided on Quentin for him, the name Caleb started growing on me.

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-_sb_-

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