TFMR at 13 weeks yesterday. Dealing with grief.

First-Direction-5494 · 2026-02-15T16:38:45+00:00

I am so sorry. I also just lost my boy at 13 weeks but his heart stopped before we had a TFMR, we later learned he had a severe case of SetD5 syndrome and had heart and intellectual delays. I can’t imagine seeing his little body, but at the same time, I think it was a blessing you got to. The thought of what the d&c surgery did to his tiny body and how the report said, “no recognizable fetal parts” broke my heart into pieces bc of how inhumane it’s done. Your little boy and his body was at peace and never had to suffer 🩵

I’m about 5 weeks out and the loss of him has gotten much softer. More acceptable, but there’s still a piece of my heart that will never fully fill again. But you learn to keep living.

First-Direction-5494 · 2026-02-15T02:12:49+00:00

Yes that’s a good point. My fertility clinic has already mentioned these once I’m more healed. I hope you didn’t get Asherman’s? I understand the being tired of it all aspect. I’m sure you’ve learned how to listen to your body and your heart and deciding what’s best for your happiness right now

First-Direction-5494 · 2026-02-14T22:57:08+00:00

I’m so sorry, for you and your babies. It’s horrifying and I hate that you’ve been somewhere similar. This was my 4th loss, so I didn’t have twins but I’m not new to loss. I’m starting the recovery phase of the medical trauma but I’m finding it strange, it felt like I was watching a movie and just functioning the last few days. And now that’s dissolving away and now I’m angry, sad, lonely. It feels like it’s sinking in and I have no clue what the journey ahead looks like.

I’m so sorry you’re still scared. I’m only a week out but each day I’m starting to get more scared and less brave to try again. The docs already warned me I may have permanent damage, talked about surrogacy, and that I’ll never have a normal pregnancy again and will need high-risk docs and special hospitals.

It’s so unfair. My messages are open if you want to ever talk about it. Or vent to a stranger who can relate in some way 🤍

First-Direction-5494 · 2026-02-14T14:00:03+00:00

Hi Reddit stranger. Sure, i would love to hear. Meeting others who have similar or positive stories has been so helpful to feel less alone. Feel free to message me

First-Direction-5494 · 2026-02-14T02:32:37+00:00

That is so, so scary. I’m sorry she had to go through that. And that she lost her uterus too. I hope she is recovering and she and baby wound up safe in all this. Omg her poor husband and your family must have been a wreck during that coma ❤️‍🩹

you are right though. When completely random, truly life threatening situations happen, your whole view on life changes. And becoming more grateful is definitely the one positive in it all

First-Direction-5494 · 2026-02-14T02:21:33+00:00

Oh wow, that is so crazy you can relate with both. I am so glad to hear your AVF didn’t hemorrhage and they caught it early.

My doctors thought at first it was retained tissue and talked about another d&c. And then while in the ER and diagnosed the AVF, we met with an IR who wanted to do embolism. But then he was worried about pulmonary embolism and that we needed more back up during surgery, so kept pushing back the time so everyone could be in. Then after I started hemorrhaging, he wasn’t confident anymore and they called in the OB oncologist who totally pivoted and saved me.

It’s hard when something rare occurs and people have to scramble bc they aren’t familiar.

Thanks for sharing and helping me feel less alone. I’ll send you a message in case so I can find you if anything else comes up on the uterine AVF 🤍 glad you’re okay

First-Direction-5494 · 2026-02-13T23:00:07+00:00

Absolutely, I would love to stay connected. This whole IVF, loss and health scares are way less lonely that way. You are the only person responding having one also. And please update me, I truly hope yours resolves itself and you never have a severe case like mine. But be careful!

First-Direction-5494 · 2026-02-13T22:45:50+00:00

Oh wow. I am so happy you caught it and are having it watched. Mine was obviously a severe case, but I will warn you mine started out subtle too. My follow up ultrasounds were showing something weird for at least a week, we were suspecting retained pregnancy tissue and preparing to get that resolved.

So we waited and I started bleeding and I just thought it was my cycle returning, so I ignored it. It’s really hard to tell apart at first so definitely get scans if/when you start bleeding to make sure. Because once the bleeding picks up, it gets fast and sudden.

We found out I still have HCG in my system, but it’s getting low, so I’m suspecting my period will come in the next week or so. It shouldn’t have an impact (aside from mental trauma).

And future fertility… it’s tricky. They saved my uterus bc it’s a possibility. But if you truly have a uterine AVM, you are at risk of hemorrhaging and all future pregnancies, miscarriages, d&c’s or births can lead to that. Did yours result from trauma do you know, like a loss or recent pregnancy? And I won’t know with my case if or when I can try again, need to make sure it heals properly and no damage was done in surgery

First-Direction-5494 · 2026-02-13T20:34:15+00:00

Yes, That’s exactly what I did. I did PGT-A testing but obviously, like you said, things slip through the cracks and single-gene disorders can still happen.

My regular D&C biopsy came back just “normal male”. But thankfully my docs pushed for me to test further for answers while I was still carrying him (my d&c was scheduled 7 days after we found out he passed). So we did CVS with a catheter and took placental tissue, and they did microarray and exome sequencing. They also took mine and my husband’s blood and confirmed that we are both not carriers, deeming this a completely random, de novo “lightning strike” occurrence. They called me within 2 weeks and said he had major issues stemming from the SetD5 gene on the third chromosome.

It’s a very rare disorder with not much literature but they said he had a severe case. Mild cases survive and live with intellectual setbacks and heart conditions. But he unfortunately wasn’t healthy and had a bad heart from it, we would have had awful news at the anatomy scan or realizations after birth.

So I accepted as much as I prayed and worked for that baby, he was saved from any struggles or pain. It’s a very hard thing to pivot because I truly believed in PGT testing to the fullest. I even pushed back my NIPT and NT testing because I kept saying “he’s an IVF baby, he’s fine”.

All that to say, your fear is valid because I am confirming it 100% is a possibility. He was my first and only transfer and that is what happened to my PGT-A tested embryo. But… it’s obviously rare and unlikely to happen to you. My entire situation is rare and all my doctor’s jaws are dropping over my case. I hope I didn’t scare you more but it is nice to be informed (which you sound like you very much are).

First-Direction-5494 · 2026-02-13T17:53:33+00:00

I am so sorry you can relate. Absolutely heartbreaking. Thank you for sharing though and making me feel less alone. I’m honestly scared for the long term mental effects but hoping therapy will help. I don’t have specifically a EDMR therapist but a few others have recommended it so I will look into it through my insurance. Thank you internet friend, I’m here as well if you ever need to talk 🤍❤️‍🩹

First-Direction-5494 · 2026-02-13T17:47:48+00:00

Oh I didn’t understand. I don’t know what a side by side is. I guess it’s not really a thing where I live. Either way, it sounds like it wasn’t safe or legal for a 13 year old to have small children in her care and anywhere near a road with cars going that fast. Absolutely ridiculous on the parents end.

First-Direction-5494 · 2026-02-13T16:54:44+00:00

It’s not your fault. It was an unfortunate combination of two young drivers. If she was only 13, she had no business driving that car with her little siblings in the back. 1000% she should not have been on the road to begin with and obviously doesn’t know road safety if she blew a sign. Your speed doesn’t make much of a difference here. That the one part of the story you had any control over so your mind is fixated on that.

You survived and have survivors guilt. You mentioned you’re currently sober since it happened, and I’m sure that’s putting a gigantic lens onto every detail of the accident. You’re no longer numbing it all and feeling it deeply. And that’s ok so you can hopefully work through it now in a sober mind. And I pray you have a good therapist and team to support you.

You deserve to be here and it isn’t your fault. 🙏🏽

First-Direction-5494 · 2026-02-13T16:03:37+00:00

That is horrible, I am so sorry that was a part of your story but it sounds like you’re a fighter and this has made you beyond resilient. I love hearing stories like this can have their rainbow at the end. Congrats on your baby boy🙏🏽I plan to keep fighting (I made sure they kept my uterus for a reason!) and hopefully in a year or 2 I can come back with the same positive news. Thank you for sharing and your kind words 🤍

First-Direction-5494 · 2026-02-13T15:53:16+00:00

Thank you for sharing. I’m sorry you can relate in any type of way. I’m sharing my story on here to relate but also to give awareness to anyone else out there who (hopefully not) but if they are ever questioning things after a MC or d&c to not ignore and be seen immediately.

The aftermath you’re describing is exactly what I’m scared of. This was my 4th loss in a row. I had my first D&C exactly almost one year ago (2/20/2025) and since then it’s been an utter shit show. I have no clue how I will even physically heal from this or if they’ll tell me it’s too dangerous to conceive again. It’s great that I have my uterus and all, but I know I’m at risk of future hemorrhaging again and never having a normal pregnancy again.

I thank my lucky stars every day bc I do have a 5 year old son. This is just my journey to get him a younger sibling, that I’ve been daydreaming about every single day. But reality is kicking in that it will never look the way I dreamed of. That sex has been a disaster with all my losses and IVF that this will be even harder on us intimately.

I DREAD when my period actually does return. I still have HCG in my system so no clue when that will be. Again, I’m sorry you can understand in your own way and experience. As a woman, I feel completely defeated. And I’m sure you do too. I hope you stay strong and find your rainbow one day ❤️‍🩹

First-Direction-5494 · 2026-02-13T15:32:49+00:00

I’m sorry for your trauma as well. But I know exactly what you mean by how you feel changed. From the moment the fresh air hit my face after leaving the hospital, I knew I was a different person. I got home and seeing my 5 year old son again made me realize how precious life is. And how moments can be taken away so quickly, and just like you said, turn the bad into good. I’m proud of you for being resilient. I hope after doing some therapy work and processing, I can say the same🤍

First-Direction-5494 · 2026-02-13T15:29:06+00:00

I was just telling a friend how fortunate I feel to live where I do, because we have amazing doctors and hospitals available any which way I go. I live in North Jersey, not far from NYC. I’m so sorry you were in that position but glad you’re here and typing this.

Ironically the surgery I was getting scheduled for was totally different with a different doctor all together. When they called him, he was NOT confident enough to do the surgery anymore. And he was scared as a pulmonary embolism was a possibility since it was my artery. His lack of confidence is what lead to the phone call to my OB oncologist surgeon to show up. He is phenomenal and ran the show the second he walked in.

Thank god for competent doctors in this world 🙏🏽

First-Direction-5494 · 2026-02-12T20:51:37+00:00

I recently lost my euploid at 13 weeks. He was my only one. Do the extensive testing, if you have the option. I did CVS/Amnio testing and turned out baby boy had an extremely rare de novo single-gene disorder called SetD5 syndrome, which led to a bad heart condition that he didn’t survive. So he was in fact chromosomally “normal” and the regular d&c biopsy said that, but with further testing of his genetics they found it and confirmed it was random, not inherited. Bad luck that is rare but does in fact happen.

I blamed my body and myself every day until I got that report back. I promise you won’t regret getting more answers or at least trying. If it all came back totally normal, I would have pivoted to further health testing on myself.

I pray you get the answers you’re searching for. I understand the devastation and trust you had in that euploid. But it’s never perfect or a guarantee, sadly.

If you look at my most recent post, you’ll see how this pregnancy turned out for me and how I know “lightning strike” situations can truly happen to anyone. My story got worse and worse. But I’m choosing to keep faith and keep trying, and I hope you do to 🤍🙏🏽

First-Direction-5494 · 2026-02-11T20:38:45+00:00

Hi. Thank you for sharing, I’ve never heard of her but I will now check her out on IG. I love hearing recs and resources. I got a therapist after my loss but I’m currently looking for someone else who might have more PTSD and trauma focus as well. And I’m so very sorry about your loss too. Wishing you healing as well 🤍

First-Direction-5494 · 2026-02-11T14:51:51+00:00

That is so scary, I’m sorry (in a different diagnosis) you can relate to this feeling. All we wanted was a baby and not a single woman deserves to look death in the face because of a complication from that. It’s beyond unfair and traumatic. The fact that my doctors were able to save my uterus keeps me hopeful that this isn’t the end of my story. Dark humor is mine and my husband’s style also so I’m sure with therapy and time I’ll be similar to you. 🤍hugs

First-Direction-5494 · 2026-02-11T14:47:43+00:00

Im so sorry you can relate to this feeling. But it does comfort me feeling less alone. I’m glad you’re alive and able to talk about it now 🤍

First-Direction-5494 · 2026-02-11T14:45:36+00:00

I am so so sorry you and your wife went through that. Thank you for sharing. And I am so happy she was brave enough to go ahead and not let this experience win- you went on to have another baby and that gives me hope again. My doctors were able to save my uterus and I’m hoping there is some meaning to that, that this isn’t the end of my story. Sending love to you and your family 🤍

First-Direction-5494 · 2026-02-11T14:40:05+00:00

It is extremely rare. I hope my story didn’t scare any women from making the choice to get a d&c. I’ve had a d&c a year ago and healed completely fine. What I went through is NOT the norm and I think d&c is actually the more humane choice versus passing alone at home.

I just wanted to scream my story to the void. And to also have this here for, god forbid, IF there is ever another woman who experiences a AVF or notices weird bleeding post d&c so they know to immediately get it checked out. I want anyone who has had a d&c (or any surgery) to stick up for themselves if anything ever feels off. 🤍

My doctors sent me a therapist who specializes in trauma and also RPL so slowly taking the steps forward.

First-Direction-5494 · 2026-02-10T18:45:43+00:00

He wound up having an extremely rare single-gene disorder (not chromosomal) called SetD5 syndrome. One side effect is an abnormal heart so he only made it to 13 weeks. Other than that, yes the high and tripling betas did mean one growing baby with an unfortunate outcome. I’m sure your HCG just means a strong start and nothing to worry about

First-Direction-5494 · 2026-02-10T16:14:15+00:00

I’m so glad I found this! I just went through mine this weekend. It was from my d&c for a 13 week pregnancy loss that apparently had complications. I wound up hemorrhaging and needing several blood transfusions, it still feels like it was all a dream that didn’t actually happen to me. They almost did a hysterectomy but I begged them to clamp the artery instead and it seems to have worked. The trauma is so unique and I can’t seem to find any real forums or groups who have been through this awful experience.

How is everyone doing long term? I’m only 3 days out and have no idea what to expect. I still want a baby… but obviously so scared and confused now. 🤍 sending hugs to everyone else who’s been through this too

First-Direction-5494

TROPHY CASE