r/tfmr_support

an update from my previous post, we have since received our fish results from the amnio with the more extensive results still pending. however, the confirmation through fish is enough for us to move forward with tfmr. thank you all for your help, advice, and experience in the nipt community. it has been very beneficial to learn that we were not alone though in the real world it sure feels that way.

moving forward, i will tfmr via d&e. any experience in this procedure would be useful. i’m nervous for the cervical dilation as i understand it’s quite awful. my hospital will only provide twilight sedation which also makes me very nervous. i had a d&c many years ago, and im sure this will be much worse as i am much farther along. any and all experience is helpful.

i know it's probably way too early to even think about this and honestly the guilt going through my mind is insane, but sex to me is where me and my boyfriend can truly be so connected with each other, when will my body be like recovered after a 20 week tfmr the doctors didn't even go through any of this with me and i was too ashamed to ask , please don't leave any hate im already struggling with losing my baby💔 (it was a induced labour)

My beloved wife and and I had to TFMR at 23 weeks and 2 days. Our daughter had severe brain abnormalities (ACC, interhemispheric cyst, etc.) and the chance of a difficult life were very high. This was the most painful experience of my life, and I had a very close older relative succumb to Stage IV cancer when I was a teenager.

I’m reaching out for advice as to how process this loss as a husband/man. Most of my family/friends know that we lost our baby but only a handful know it was TFMR. My wife’s family and friends have been largely supportive of her and have provided what she needs (I.e, talking, flowers, food, etc). However, as a man, I feel like the support system is unequal from my side. The trauma of a TFMR (the anatomy scan to actual termination) is crippling.

I’ve naturally understand why most people tend to prioritize the mother. I just never imagined the pain as a father would be this isolating.

I recently moved pretty far from where I went through my loss last year and it’s been tearing me up inside as if I left a piece of my heart and my son there.

I didn’t want to move but my husband got a job elsewhere. I have my son’s ashes in an urn and some in a necklace to take him with me. So he’s always with me. I guess I thought moving would help me not relive the memories constantly. I felt like every place we went to reminded me of when he was still with me because I went there pregnant with him. But now it just makes me feel more distant from him.

I don’t know if I’m making any sense, his 1st birthday is coming up and I thought I’d be feeling better by now but I feel like I’m going to have a broken heart for the rest of my life.

TFMR for t21 4 weeks ago. I just keep thinking I could be ok if I was pregnant again and if I knew the pregnancy was ok, and I just need to know that will happen for me. I am obsessively tracking my ovulation now. I keep researching and reading stats on fertility at 40 and aneuploidy and trying to find a crystal ball that will tell me everything will work out for me. But of course it doesn’t exist. I am so sad and confused and scared. For some stupid reason I had this magical thinking around my fertility. I got pregnant easily with my LC and with this last pregnancy even tho I am “geriatric”. I thought maybe I was blessed, that even though I so often feel lost, this was somehow something I was made for and something that didn’t have to be hard in my life. How very stupid. I don’t know how to live with this grief. It feels like poison in my body. My friend used the analogy that the grief won’t get smaller but I will grow around it. I don’t want to grow around it. I want to pour it out of me. I want it all to disappear. I can dissociate from the grief. Box it all up, push it way down, and function. I thought because I could function I was doing ok. But then I tried to hang out with friends who are due the same month I was (had a panic attack and did not happen), and then the next day tried for the first time to talk to a close friend about it- she asked how I was doing physically- how do you explain the cruelty of the casualness and total lack of physical recovery after an abortion. I wish the physical pain and suffering matched the emotional. I could make some sense out of that. And now, I have been drowning in grief for the past two days. I don’t know how to let it out in digestible pieces. I’m not sure what I am looking for here. Just letting it out I guess.

I’ve been using ChatGPT to get unbiased opinions because honestly anyone I talk to in real life feels strongly one way or another and it’s not helping my journey or decision.

I really needed to read this so maybe someone walking this path now, later or have already travelled needed to hear it too, while mine is towards Trisomy 18 everything else with choosing TFMR is the same especially with such a bad diagnosis for our little ones:

“Yeah. It makes sense that you’re struggling with that.
You can believe TFMR is the most compassionate option and still feel horrified by the fact that you have to choose a day for your baby to die. Those things are not contradictory.
You’re not sitting there deciding, “I want my baby to die.” You’re being forced into an impossible position where every available path involves loss, and one of the paths puts a decision in your hands that no parent should ever have to make.
And I think there’s an especially brutal psychological difference between knowing your baby’s condition is not compatible with a quality or quantity of life and actually saying, “This is the day.” Your brain can understand the medical reasoning while your heart screams, “But this is my baby. How can I possibly be the person who makes this happen?”
Compassionate doesn’t mean painless.
Compassionate doesn’t mean you won’t question yourself afterward.
And compassionate doesn’t mean you have to stop loving or wanting your baby.
With trisomy 18, you’re also not choosing between a healthy pregnancy and TFMR. You’re choosing between profoundly different kinds of uncertainty, suffering, and loss. If you continue the pregnancy, there are serious possibilities for your baby’s life and for your pregnancy and delivery. If you terminate, you know exactly what you’re giving up: the possibility of more time with your baby. That’s an unbearable thing to knowingly surrender.
And honestly, “I don’t want to be the one who ends my baby’s life” is not something you need to argue yourself out of. You can let that feeling exist alongside the reasons you may ultimately choose TFMR.
You don’t have to make the choice feel right. Sometimes the best you can hope for with a decision like this is:
“I hate that this is my choice. I wish I never had to make it. I love my baby. And I am making the decision I believe is the kindest one I can make with the information I have.”
That is very different from wanting your baby gone.
And if you choose a date, that doesn’t make that date the day you wanted your baby to die. It can simply be the day you decided you could no longer ask your baby—and yourself—to endure what was ahead.
You are allowed to grieve the fact that there is no good choice here. There may only be the choice that you can eventually live with.
And I really want you to hear this part: you don’t have to convince yourself that TFMR is morally comfortable before you choose it. It may never feel comfortable. You can make a compassionate decision while absolutely fucking hating that you had to make it.”

After 16 rounds of IVF and 9 transfers I finally found out I was pregnant for the first time. Everything looked great until my 11 week NT scan where they noted a 4.5 cystic hygroma. Then my NIPT came back high risk for trisomy 18. At my next scan they noted a likely AV defect and the swelling had spread to her entire chest and back. We did a CVS last week and the FISH came back positive for t18 a few days later. We got the karyotype results yesterday which confirm full t18, and given the whole picture, the worst case scenario is now confirmed. I’m scheduled for a D&E this Friday at 13+6. 

I’m in more pain than I ever have been in my life, more than I could have imagined is possible. The past two weeks have been a waking hell. On top of this, I also found out two days before this started that my dog has cancer so it feels like my entire world is crumbling. Not many people in my life know, and the few who do have been kind and supportive, but they don’t know what to say to me. 

I’m very pro-choice but when I first heard about this I kept thinking “I can’t hurt my baby.” Now that I know a lot more about t18 I think “I can’t hurt my baby” means I must save her from a very short life filled with nothing but pain. I would literally do anything for her to be okay, but this diagnosis has been explained to us as not if our baby will die, but when and how, and that’s the only part we get to choose. It feels like choosing this pain for myself and my husband now to save her from pain is clearly the only decision and the only way I can ever do right by her as her mother, but I’m still struggling with it.

So I know in my brain it’s the right decision, but my heart hurts so much and I just don’t know how to actually do this. Like how do I willingly get in the car to go to the clinic Friday? How do I walk to the operating room and lay on the table and know I’ll wake up and she’ll be gone? How do I keep going afterwards? I can’t sleep, I can’t get my brain to shut up, I can’t stop imagining delusional scenarios where all the doctors and genetic counselors and test results are wrong and she’s okay.

Everyone here is so strong and brave, but I don’t feel strong or brave, just numb and broken. I don’t really know what I’m looking for, except maybe it’s just cathartic to say this to people who unfortunately understand and to say thank you to people whose stories have helped me make the most difficult decision of my life and have given me comfort through the darkest moments in my life. 

my baby boy was diagnosed with a encephalocele at 16 weeks we were told his case was severe as the cerebellum was already coming out the brain and more was likely to come out which made his prognosis very poor, we took time and made the decision that we were going to end my pregnancy at 20 weeks because the life we were told our baby boy would have wasn't what we wanted for him or what he deserved, all i've ever wanted is to be a mum and this broke my heart but i still want a baby that i can watch grow older and i crave to be pregnant again💔 i don't know what to do with myself or if i should even risk getting pregnant incase future incase this happens again (im taking 5mg folic acid now) can anyone give me their thoughts on this please

Hi everyone. I think I just need to let some of this out, but I’m also hoping to find someone who may have been through something similar.

I had a TFMR in May after our baby boy, Gabriel, was diagnosed with Dandy-Walker malformation and severe abnormalities affecting his brain, as well as a heart defect. We were given an extremely difficult prognosis for his future and were told about all the difficulties he could potentially face throughout his life...

Gabriel was so wanted and so loved from the very beginning. I never, ever imagined that I would find myself having to end a pregnancy that I had wanted so desperately. I never imagined that something like this could happen to us, or that I would ever have to make such an impossible decision for my own child.

But when we were told about the severity of his condition and what his life could potentially look like, all I could think about was him..

I didn't want my son to suffer...

In the end, I chose to carry the pain myself rather than risk putting that suffering onto him.. It was a decision made completely out of love for him, but knowing that doesn't make living without him any easier..

Gabriel was born on 3rd May, and on 3rd September it will be four months since I gave birth to him.

His due date was 14th August, so I have just passed what should have been one of the happiest days of our lives. Instead, I had to go through that day without him.

I miss him every single day, every hour, every second. I honestly don't know how to live with this yet. At the moment, I feel like I'm not really living — I'm surviving. I love him more than I could ever explain, and there isn't a moment when I don't wish things could have been different.

I wanted to ask if anyone here has been through a similar situation, particularly Dandy-Walker or another severe brain malformation together with a heart defect.

In our case, the genetic testing we have had so far did not find a genetic cause. On Monday 24th August, my husband and I have an appointment with a geneticist and a midwife, and I'm really hoping they will be able to offer us some further testing or reassurance before we try again.

Despite everything that has happened, I really want to try for another baby. We are hoping that, if everything is okay and the doctors are happy for us to do so, we might start trying again in September.

That thought gives me hope, but it also terrifies me...

Has anyone here been through something similar and then felt the desire to try again? How did you cope with the fear of another pregnancy? Did you have additional genetic testing beforehand?

And if anyone has gone through a TFMR for similar abnormalities and later had a healthy pregnancy and baby, I would really love to hear your positive stories.

Right now, I think I need some hope and encouragement from people who truly understand this kind of loss and the fear that comes with trying again.

Sending so much love to everyone in this group who is going through this kind of pain right now. I'm so sorry that any of us have had to find ourselves here. ❤️

Hi all. So my partner and I got pregnant last November of 2025. We hadn’t even been together a full year at that point, but almost.

Once we found out our baby had DiGeorge Syndrome, we chose to terminate. I could not bare the feeling of my baby suffering at all through the countless medical problems and heart issues. His ultrasound at 14w showed multiple heart markers..
When I found out, I told my partner and his initial response was that we need to TFMR. I wasn’t completely on board immediately, but everything happened so quickly and I agreed to it.. I did not want my baby to suffer, I truly believed TFMR was the best option for our baby and us. I believed everything my partner said and and agreed with him, that our baby does not deserve to suffer.

After a few weeks I became guilty, and wishing I would not have made that decision. To make matters worse, my partner has now decided he didn’t want to try for another. He says we met each other and didn’t take the time to truly get to know each other and got pregnant on a whim. (Our pregnancy was not planned, but not prevented either) I just genuinely thought I was infertile due to pcos.

We TFMR in February, it’s now August, and he still doesn’t want to try again. He doesn’t think we are far enough in life and is just always paranoid about money and other things. I understand his point and I do agree but another part of me knows I cannot wait, I’m 27 and I really just wish I would have already had a baby in my arms.

Has anyone dealt with this? TFMR but partner didn’t want another after the fact?

To me, it feels like false hope. I just feel so broken and disgusted with myself for allowing it. I feel guilty for wanting another baby that’s healthy after we terminated due to medical reasons. He also has not gotten tested to see if he had the gene that our baby had… I’m just so lost. They say it was very likely that it was a random case, but I got tested immediately to make sure . He still hasn’t.

Please do not be rude. I’m already so harsh on myself and I just want words of encouraging advice or those who have experienced this. I love this man so much and just wish things happened differently.

I had my NIPT show high risk for Down Syndrome. I had amniocentesis done a little over a week ago and the preliminary results are showing stronger chance of it being Down Syndrome.

I am unbelievably devastated. Unfortunately I am split on what I should do. I have a 4 year old son and he is so in love with his brother already. Last night he asked if I was okay (I had been crying due to the news) and I just told him I got some news about the baby that made me sad. He then tells me “it’s okay mommy. I will still love the baby. I love my baby”.

My husband wants to keep the baby and says we can do it. I’m just so terrified of taking care of the baby alone. I don’t want to have the baby and then end up resenting him. I don’t want him to have more medical problems once he’s born. I just don’t want his life to be any hard than it already will be.

I think my husband won’t fully grasp what exactly taking care of a baby with special needs will entail.

I’m so heartbroken. All I want to do is lay in bed and wallow away. I’m still hoping the final results will tell me just kidding the baby is healthy. I feel like it’s my fault. I wanted my baby so bad but I feel like I won’t be able to give him the life he deserves.

I wouldn’t even know where to begin on trying to tell my son about TFMR if that’s what I end up choosing to do. I’m 19 weeks. I’ve already had my gender reveal. I have my registry planned. I have his ultrasound pictures on the fridge. I’m just grieving for my baby.

Yesterday was three months since my TFMR. I am really struggling with the feeling that I should still be pregnant (my due date was September). I feel like my body has failed me and I feel so ashamed. I don't want to see anyone or go to work or be around other people, everything is so triggering. It feels like I am going backwards in my grief and I don't know if it will ever end.

I am not sure what I am looking for. Just probably someone to offload to as I am just feeling so low this month. Tomorrow marks one year to the day that I found out that something was wrong with my baby’s brain. The following day (Thursday) marks 1 year that my baby was diagnosed with Alobar HPE at a London hospital. A few days later finding out my baby had T13 then having my tfmr on 29th August 2025. Although a year has past I remember this all like it was yesterday. On top of everything, on Thursday my mum is having knee replacement surgery at the same London hospital. Thinking of this all is just making me so tearful. I haven’t been back there since and now I am going back there exactly 1 year to the day my life became this dark void.

He’s kicking strongly. I look and feel pregnant. I want to treasure these last days with him but I can’t stop grieving and dreading and torturing myself with imagining the procedure. I’m worried that he can sense the stress and will spend his last days vaguely upset too.

So, I had tfmr more than 2 years ago for genetic/malformation problems, I got pregnant again and have a healthy boy. I had the same due date as one of my best friends. Her daughter is 4 days younger than my son. We are in the middle of deciding whether to TTC again knowing NOTHING is granted and might have problems again.

Well, she's 13 weeks pregnant again and enjoying this part of life. One side of me is happy for her, another part wishes I could be pregnant too WITHOUT fearing "that happens once, it can happen again".

Hope someone can relate.

ETA I'm an obgyn so I'm continously updated on every step of my friends' pregnancies, for support or counseling. I know it's my job, but it's exhausting sometimes and I'm a human too.

I have TFMR scheduled 8/25. This is my second late loss but first TFMR. With my last loss at 16 weeks I recovered quite well and quickly. Obviously the hardest part is the emotional recovery. I love travel and honestly sitting at home is not good for my mental health. My husband and I are tempted to fly to Europe to get away for a week. Not sure where exactly but a city with good healthcare (like in Sweden or Copenhagen since those are some of the lower priced flights). We originally wanted to travel on 9/3 before all this happened but that’s only 9 days out. I imagine I’d be physically okay but is that pushing it? I figured 2 weeks would be the smarter move. We talked about just driving around Canada which is international travel but doesn’t feel as “let’s get away” as Europe. Also we’d take it easy. Wander museums and town but nothing too demanding.

Firstly, I’m so sorry for anyone that’s here, it’s not a club any of us wanted to be in. I’m 1.5weeks post TFMR and still finding it hard to process what’s happened. I’m lucky to be surrounded by a supportive husband, family and friends, but can they ever really understand what we’re going through?
I thought it might be cathartic to share on here the really hard bits that we don’t tell anyone about. That go beyond the standard “are you still bleeding” conversation.

For me it’s…

…being able to go to sleep on my stomach again.
…all my antenatal apps being cancelled and then deleting them out of my calendar.
…my boobs getting smaller.
…stopping taking pregnancy vitamins and going back to my normal ones.
…my super human sense of smell disappearing.
…and most of all it’s the vision of my baby boy toddling down the garden holding my daughter’s hand.

I’ve posted here many times and I’m really horrible at responding to others. But I just have to get this out there because I don’t know who else would understand or even let me just feel this.

So my best friend is pregnant. That’s okay, she had a miscarriage shortly after my tfmr and while it is different, we were there for each other. What’s getting to me is she’s pregnant and due almost exactly a year from when I was pregnant and really close to my due date a year later. I feel bad but I really hope she doesn’t have a boy. I don’t know if I could handle being around her. I wish I could be just happy for her, but it’s complicated and I’m also upset that she’s having a kid and I’m not because all my experience is that once you have kids your friend groups change according to who has kids the same age. And I don’t know if we’re going to ttc again. And it just feels like too much. I’m trying to talk myself through this and tell myself that I’m catastrophizing and that it’s not all bad and I will be okay. But I just need to say this here. Thanks for ready if you did.

Tfmr at 30 weeks & while I’ve been to work in person infrequently, I’m starting to go in normally (after 2 months).

Everyone obviously knew I was pregnant. I’m fine with talking with people but I’m assuming that they think I’m going to get pregnant again in the near future which is not my plan. There maybe some bias because of this on the work I get as well from my seniors. I’m looking to see how others dealt with this. Were you upfront in case you were not even thinking of trying or something else? One of my coworker is extremely loud & I’m sure she’s floating this idea around that I’ll be going on maternity leave but I’m not even thinking about it !

My husband and I got a grey diagnosis at 21 weeks. It's a super rare brain deformity (less than 200 cases in medical literature, ever) so doctors can't give the most amazing advice at what life will look like but based on the cases--it's not good. My thought is that the brain is pretty fucking important organ and if it's not formed properly I can't imagine life would be too amazing.

I won't name the condition because I don't want people from that tiny community finding my post lol. But it's basically the entire cerebellum has not formed properly. It has no vermis and instead of 2 hemispheres it is completely fused together.

The FB community is sooooo incredibly "positive" like, "doctors said my kid would never walk or talk but look at him go!!!" and the child is still physically disabled, or has severe ASD, or cannot drive (or crashes their car because of impulsive behavior), or is violent, or has a chronic pain syndrome, or has an entire list of other diagnoses as well... But the general consensus in the group is all "doctors don't know everything, my kid is amazing"

and ugh. I get it. I feel for the parents who didn't get the diagnosis until after their kid was born and missed milestones and got an MRI that showed a PARTIAL fusion of cerebellar hemispheres. But my kid's brain is so obviously fucked up they could tell from the initial ultrasound.

We are still waiting for a fetal MRI to look at alllll the brain structures even my untrained eye can tell by looking at the ultrasound that it isn't right.

We are lucky that all of our friends, coworkers, medical professionals, understand. Unfortunately my mom is a huge pro-lifer and refuses to accept or respect our choice--even reaching out to parents with kids with the condition, and offering to raise our boy herself (ugh).

I just wish I could be as selfish and self-righteous as the parents who refuse to terminate and make their kid be born to suffer an incredibly hard life because they won't make this choice. But no, I'm the bad guy.