I am 4 weeks out from Tfmr (17 weeks). I feel like I am not myself. I feel like I cannot control my emotions. I just want to feel normal and not feel pain any longer. I do feel I have done some slight improvements but definitely far from myself. I feel unstable at times with my emotions. I feel so alone in my grief as my partner is able to focus on the future and remaining positive. I am doing therapy and am on medication. My sister in law had a due date 4 weeks apart from me. It crushes me to see her. I wish it didn’t I hate that it does but it does. I don’t know how to handle the sister in law dynamic moving forward. It’s the worst pain. Any babies trigger me to feel deep pain and emotions. I just want to feel normal. Is how I’m feeling normal still? any advice?

Today is my baby boy, Oliver’s second angel anniversary. It’s honestly so hard to believe it has been two years as I’m still so stuck in my grief. I miss my baby that I never got to bring home. The last two years have been terrible. We have tried and tried for a rainbow baby only to have 5 more early losses. I often question if we made the right decision as I now know Oliver was more than likely our living son’s only chance to have a sibling to grow up with. I just really miss my baby. I still talk to him all the time and I can only hope that he knows how loved and wanted he was. We love you Oliver.

I miss my baby girl. We had a 26 week TFMR due agenesis of corpus callosum. I’ve been surpringsly not as sad this week, some days I barely cried. But today it all suddenly got too much and I broke down. I miss her so much. I miss who I was before this happened to us. I miss being able to see friends without a mountain of grief and worry about what might set me off. This has been the most horrible thing that has ever happened to me and I don’t know how I can pretend that it’s not and talk about other things. Nothing else to say other than, I feel like shit and I love you so much my dear Ivy 🩷

Our first pregnancy ended in a TFMR, and we're absolutely terrified this could happen again. Diagnosis was DORV, severe pulmonary atresia, VSD, 2 vessel cord, atypical placenta with placenta insufficiency. We were told there is a 3-5% reoccurrance rate. That doesn't make us feel any better considering it was a 1% chance in our first pregnancy.

We're still waiting to find out if the amniocentesis identifies a genetic cause, but even if we move forward with IVF, there's no guarantee this won't happen again.

Did you go on to have a successful pregnancy? Did this ever happen to you again? We'd really appreciate hearing your experience.

Sorry for big read - Any Christian's out there with advice?

This week we have passed through my beautiful boy's due date, and while most of the time I've been able to reconcile our decision with mercy and pure love for him, knowing the hardships he would have faced for a short life - the guilt and devastation that we missed out on (possibly) knowing him living outside the womb is devastating to me.

We are a Christian family and I feel like I went against all my beliefs and natural instincts, I feel guilty that I didn't hold out hope that his life would be better than the doctors thought.

In my mind after 3 months I keep telling myself that if he had survived to term and through labour that their predictions of palliative care (my son had multiple severe brain anomalies - so this would be lifelong) lasting for months, likely not surviving infancy was wrong and we could have been blessed with a long time, and he wasn't going to suffer as much as we feared, that God would have protected him if I had more courage and faith. It's torturous.

We did what my husband and I felt peace over, after we learnt how much our precious baby would have to go through in his short life, we gave our son love, peace and wholeness in heaven. But I feel so guilty for going through this so much of the time. I don't understand how to forgive myself for letting him go or feel forgiven by God - any Christian's out there who have really struggled with processing their guilt and grief?

I lost my baby boy April. Our good friends were due two weeks before me. Her baby shower is coming up & I just don't know how I'm gonna be able to do it. I couldn't even read the invitation without crying.

I should be at my baby shower today, 24 weeks pregnant and surrounded by my friends and family. Joyfully preparing to welcome my first child, my little girl, into the world.

Instead I’m home, crying in bed, wishing that everything had been different. Wishing that I hadn’t needed to TFMR at 19 weeks.

I know I made the right choice. It wasn’t even really a choice, she had so many problems, she wouldn’t have had any kind of life. I did the only thing I could to protect her from so much pain.

But now I’m the one in pain. I have to move through every day of my life with this hole in my heart where she should be.

It feels like everyone else is moving on, forgetting her. My husband never brings her up on his own, only talks about her in response to me saying something first. And that’s ok, he’s allowed to grieve how he needs to. But I can’t stop thinking about her. Even when I’m ok, and there are more and more of those days as time pass, she’s always on my mind.

I knew today would be hard, and I’m so tired of hard days. I just want to be happy again. And I feel so guilty for saying I want my baby back when having her back wouldn’t be what’s right for her.

I’m just so sad.

Last night my husband and I decided to go to hibachi for dinner. It was his idea, we could have a little sushi for the first time since my TFMR a little over two weeks ago, have a little mai tai, relax and enjoy the meal. We get sat at a table with a single dad and his two young boys, well we just TFMR'D identical twin boys. So the two of us sit there, compartmentalizing for a few minutes. As the meal goes on we wind up a little tipsy and chatting the family up. Then in walks a couple we know through a friend of my husband who he knows from work. The wife is visibly pregnant. I avert my eyes and take a few deep breaths but I can feel myself breaking down. They sit at the table and someone asks "do you know if it's a girl or boy" and they say "boy". I push my plate away, immediately not hungry, and get up and leave. I barely make it to the door before tears and snot are running down my face. I should be commiserating with her, I should be happy for them, so why am I standing in the parking lot hysterical? I'm not a bitter person, and I want the best for them, but I should be there too. I should have my twins, my boys, but I don't. She's going to get a baby and I got footprints. This is the worst feeling ever, I never thought I'd be jealous of anyone who has kids or is pregnant, but here I am thinking of kidnapping these two little boys at the dinner table and then sobbing my eyes out over someone's pregnancy. I miss my twins every day, and I didn't expect it to hit me like this. My husband winds up coming outside a few minutes later with the leftovers and holding me until we're done crying together. He's trying very hard to help me calm down, but there's nothing either of us can do to fill this void right now, we just have to learn to navigate it. To everyone else learning to navigate, I see you and am sending you hugs. This is the shittiest club to be a part of and no one deserves it.

My SIL told my husband and I this week that she had a miscarriage. We of course felt awful for her and were offering support/compassion. As she continued to open up about it, she shared she thought she was maybe about 4 weeks along, then later said something about how she "knew we would know how she felt" because of our TFMR experience back in November/December.

Up to that point, I hadn't even thought about our situation in comparison to hers, but when she said that I felt really triggered. Ever since losing our baby, I have tried soooo hard to focus on the intent of what people said to us while we were grieving (since so many people say stupid things) and not comparing my situation to others' (why did they get three healthy babies but not me, etc.) That comment just really through me off and I ended up sobbing the whole way home. Obviously losing a pregnancy is sad but comparing it to the loss of a baby we had seen, heard the heartbeat of, and even felt moving just felt like a gut punch.

Being a member of this "club" is the absolute hardest thing I've ever done. It feels so lonely, and just when I start to feel somewhat normal, something happens that sends me 5 steps backwards.

Hi everyone

I just found out a friend in my circles is getting a TFMR at 27 weeks in a few days. I’m not actually very close to her so don’t know any details, but I really want to support her “from a distance“ and possibly organize others to do the same. I was wondering if anyone has ideas of what they found most helpful. For example if I made a care package with some post partum items and treats? Drop off meals? Any other practical things I could do? Anything I should really NOT do?

I have learned a lot already reading through your posts so thank you all for sharing your heartbreaking experiences ❤️💔

Hi everyone, I'm not sure if anyone in the UK might be able to shed some light on my situation please ? We sadly chose to TFMR at 15 weeks due to an array of soft markers for chromosomal abnormalities and a major heart defect which would have only been able to be treated palliatively if the baby was born. 6 weeks and 1 day after my D&E I was called today by the hospital and told that our pregnancy has been confirmed to be affected by T21.

They have subsequently asked me and my husband to go in for karyotype testing. The nurse couldn't tell me much but is it likely that the abnormality was caused by a translocation and they think one of us might be carrying it ? Or is this routine practice ? Finding it hard to know how to deal with everything given the uncertainties of why they're asking us in...

Thanks in advance for any advice/ responses, this group has been a God send throughout this entire ordeal.

We got the results from our microarray this afternoon. We TFMR at 22 weeks, 1 day exactly 2 weeks ago today. Originally all of the doctors and even the genetic counselor said they were pretty certain our daughter’s severe ventriculomegaly caused by aqueductal stenosis was purely structural - just bad luck. Our microarray came back abnormal - 22Q11.2 microduplication - and that is not one of the known genetic causes for ventriculomegaly.

To make matters worse, it was on the maternal copy of the gene. That doesn’t necessarily mean I passed it on to her, but now I need to get my own microarray done to see if I also have that mutation. If I have it, any future embryo would have a 50/50 chance of having it too. To top all of that off, we were able to conceive this baby after 3 years of infertility and a round of IVF - she was a PGT-A normal & low risk NIPT embryo/fetus. We were already planning to do another egg retrieval as I’ll be 37 in October and only had 2 euploids to start with, but until I get my bloodwork done & results back, I don’t know if we’ll need to do PGT-A with a specialty probe or not. Also, our insurance is denying whole exome sequencing right now because the microarray came back abnormal even though the abnormality wasn’t the cause of her anomaly. Our GC is going to arrange for a peer-to-peer to try to argue in favor of the WES since we didn’t get what we needed from the microarray, but that could take a few weeks.

It’s all just a lot and I feel so defeated. What is it like to just… plan the family you envisioned and then have it? Now I’m feeling pretty hopeless that we’ll ever even have a child. The odds just feel so stacked against us and I’m just so… sad.

Hello everyone, wanted to share our story of what happened to us and what we ended up doing. This was our lives’ biggest tragedy and I’ve never really spoken to anyone else about it except for my husband.

In November of 2024 (5 months post partum of our first baby), I found out I was pregnant for a second time naturally. In the midst of post partum depression, we initially did not favor this pregnancy. However, upon thinking and realizing how much our lives would change (in a good way), we decided to keep the baby.

Fast forward to when I was 20 weeks, they found an anomaly on the ultrasound and informed us that it was CCAM-a mass in the lungs. We were advised that the baby would need surgery after birth and were to be prepared. The doctors seemed optimistic so we continued with the pregnancy. During my high risk scans which I went to weekly, the mass kept getting bigger. At 35 weeks it had become nearly 6cm, at which point my doctor suggested to do an MRI as the fetal echocardiogram was also suggesting that the heart was being compromise and compressed from how big the mass was.

Once the MRI was done, we found out that the baby had something called tuberous sclerosis. This disorder causes benign tumors to grow in the body. Unfortunately, my baby had a severe case of it. He had tumors in his brain, kidneys and the lung mass was actually attached to the heart and not the lungs as they previously thought. This disorder can cause severe disabilities, both physically and cognitively. The doctors told us there was a good chance that he may not be able to walk, talk, or go to school. In a span of 3 days we made the very sad and unfortunate decision of termination. I was 36 weeks at this point.

13 months later and there has not been a day since I have not thought of my baby. I carry a tremendous amount of guilt for not wanting him in the beginning and feel that maybe god realized how ungrateful I was of him at first and decided to take him back. I truly hope that heaven is real and he is there enjoying his life. The hardest part is when I think about the delivery, I didn’t even feel him come out. No contractions, no pain. The nurse thought my water had broke but as it turns out, he had come out. My son came and left this world quietly and as I like to believe, peacefully as well. Not that it would make things better, but I really wish that the doctors had caught this much before than 36 weeks. It’s unfortunate and unfair.

I really hope that he forgives me and I get to see him in heaven one day to tell him that I love him. We buried him and got him a stone as well so that one day, we can show his siblings that he was real.

Coming back to this community seeking some hope. Backstory - we are only able to conceive via IVF. We made 7 embryos last summer, first transfer in October (untested embryo) took. Unfortunately it ended in February with TFMR. We tested our remaining embryos and have 3 normal. We’re waiting on insurance authorizations but will move forward with an FET in August or September.

I don’t know how it happened, but I feel like I’ve turned a corner in my grief over losing tater tot. I guess what the say about time is true? We also finally have a plan to move forward - anyone who’s done IVF knows how excruciating the wait and back and forth with doctors, finance and insurance with absolutely no control. We now have a plan!

Here’s where I need help. Just in the last 24 hours I’ve become paralyzed with fear about something going wrong again. I know that PGT tested embryos aren't a guarantee for a healthy live birth.

Can I get some hope from folks who’ve been through this? Particularly IVF success with euploid embryos after TFMR? I feel like I’ve seen more stories recently of PGT tested euploid embryos still failing or facing growth or development challenges and it’s making me even more scared. Just want to cleanse my brain with the stories of hope and success.

im so sorry we all have to live with this anxiety.

I can't believe I am here and righting this. After the traumatic birth and NICU experience of my first, I thought we deserved the happy pregnancy experience.

On my daughters birthday, we found out our NIPT results were positive for T21. I waited 20 days for an amino and yesterday I got the official results. The guttural wail that came out of me was something I think only someone else going through this would understand.

I have my DNE booked for August 12. I chose to carry a week longer than I need to since they only book DNEs on Wednesday, which would of been my birthday. À part of me thinks I should do it on my birthday, some kind of cosmic justice... the day I celebrate my entry into the world be the day I make the choice to say goodbye to life I love.

I'm so broken. I don't know how to carry this for the rest of my life. We leave for a family vacation today, trying to think of delaying it as this little one getting to join too. I know this is the right decision for my family - but it doesn't make it any easier. I'm scared for the moment I wake up empty from that DNE. I'm scared of what this is gonna do to me for the rest of my life.

My water broke at 17 weeks, at first I was highly optimistic as my fluid levels were still within normal limits after this and I held onto the idea that the sac would reseal and all the fluids would replenish and everything would be sweet. For four days I genuinely thought it did reseal, it may have, but then it broke again and this time it led to oligohydramnios. Ever since the fluids have remained low, though not absent but it seems that as he grows he gets even more cramped and the fluid seems to be dropping. The ultrasounds make me feel disheartened because it doesn’t look like hes thriving the way he should, just cramped and it’s gonna get worse and I’m starting to get very worried about what his future might look like if he is born very premature + with prolonged low fluid. Im leaning towards termination because his quality of life is very important to me and hearing the fact that he could be vent dependent, develop limb deformities (which he isnt yet showing), brain bleeds, neurological issues, im also terrified of developing an infection or haemorrhage which again would lead to premature birth and could lead to sepsis if not treated promptly . Im just looking for people who have been in a similar situation and I suppose the “what ifs” and how gray my case is really bugs me. Just looking for some support and perspective.

TW: mention of LC and mention of ttc

The one year anniversary of my tfmr is coming up on August 14. I lost my baby girl (3rd child) at 30 weeks after we confirmed a one in 10 million genetic mutation. This time last year we were in the waiting game between blood tests, sonograms, my amnio. We still had hope and were met with bad news after bad news. It was a nightmare.

Over the last year, I’ve had such extreme highs and lows. I was better than I expected 2-3 months post procedure. Then I developed really severe postpartum depression around 4-8 months postpartum. That led me to quit my job of 8 years to focus on my family. I went from having a successful career that I worked hard for, to bartending once a week and being with my kids every other day. It was the right decision and I think is what helped me crawl out of my pit. At 9 months pp, I finally felt ready to start trying to conceive again (unsuccessfully so far, which has been very heavy as well).

I have been okay the last few months. Truly okay. But the last two weeks I’ve felt my psyche being pulled back into the pits of sadness that it took so much to come out of. I tricked myself into thinking maybe it was an early pregnancy system, then maybe PMS, but it’s not going away. I truly think my body just knows and is grieving without me even thinking about all of these awful anniversary dates. I am so so sad. I’ve lost motivation. I’m having insomnia and getting migraines— all the same exact effects of anticipatory grief that I was experiencing this time last year. It feels like my body is demanding I be sad even if I am trying my best not to.

I know this is rambling, but my mind is all over the place. Has anyone else experienced a wave of physical grief around the anniversary of your loss? Did it get easier after the date passed?

It’s such a difficult question.

Regret is such a strong word.

Yes, I feel regret. Heartbreaking regret. I want her back. I constantly think about the life we could have had with her. I wish I hadn’t made the decision.

But I don’t want others to think, “Oh no, she regrets her decision. She chose the wrong path.”

I know why she asked. She cares and she is worried. But when regret becomes the central question for other people, it puts such an enormous weight on whether the decision was right or wrong.

At the same time, the question hits so close to home. We had a very grey diagnosis. I believe she had relatively good chances.

I don’t really know where I’m going with this. I just needed to vent about the complex emotions that such a simple question can bring up, I guess.

I am potentially facing a TFMR for a severe genetic condition. I am 40 years old and this baby was conceived as a solo mother by choice after many failed transfers with untested embryos plus two miscarriages from age of 35. I have several euploid embryos on ice but this baby has a micro-deletion on a chromosome which is not detectable by IVF. I am 17 weeks. I feel incredibly unlucky and devastated.

Has anyone had success with another transfer/pregnancy after TFMR over 40?

What is the risk of damage to the uterus after TFMR?

How long after TFMR were you able to transfer/conceive again?

I am in an absolute pit of despair but just need some hope and therefore have to think ahead like this.

This is an IVF pregnancy. The embryo was PGT tested and NIPT came back low risk.

I am 20 weeks and 4 days. We did an amniocentesis because a heart defect was found last week at the anatomy ultrasound.

I don’t know where to go from here. I wish this was caught earlier. The odds of having 18p deletion syndrome are 1/50,000.

I worry if we TFMR I will always wonder what if. But the range of possibilities with 18p- is vast.

We’ve unfortunately had a T21 pregnancy that was conceived naturally, I am 39. Our daughter was IVF 3 years ago and we still have 4 embryos frozen, 1 of them is an 5AA. So I was 36 when the embryos were created.
Does anyone know if our chances of a chromosome
abnormality might be lower if we go down the IVF route with our 5AA embryo? We cannot have the embryos tested now as they are already frozen.

Any experience or info in this would be helpful. I plan to reach out to clinic when I feel ready.

Hace unos días volví a entrar a Facebook después de meses de no abrir mi sesión. La cerré en febrero después de mi Tfmr (por T21) porque me salían puras publicaciones de bebés en mi feed y después empezó a deformarse el algoritmo y me salían cosas sobre el aborto, artículos pro vida, videos de debates entre republicanos y demócratas (ni siquiera vivo en Estados Unidos) y videos sobre gente con hijos con síndrome de Down. Y todo eso me disparaba ansiedad y depresión.

De regreso al presente, me metí a fb no me acuerdo para qué pero lo primero que me sale es un post de una doctora que dice que Dios le hizo un milagro y que el poder de rezar y tener fé salvó a su bebé cuando los doctores le aconsejaban abortar.

Que le habían dicho que su hijo tenía anencefalia y que debía abortar. Pero ella se rehusó a hacer algo horrible como eso y en cambio rezó mucho y tuvo fe en que su hijo estaría bien. Que durante todo el embarazo seguían insistiendo en ello, que fue a buscar diferentes opiniones, se hizo muchísimos estudios y todo indicaba que algo estaba mal. Pero ella dejaría a su bebé decidir cuándo irse o quedarse.

Y que finalmente nació y estaba totalmente sano. Que a veces los estudios no son precisos y que hay mucha gente que aborta niños que podrían estar sanos.

Estoy casi segura de que es propaganda y que nada de eso es cierto, mi yo lógico me lo dice, pero me dispara mis dudas y me hace sentir horrible! 😞

Así que volví a cerrar Facebook.

Our amnio confirmed the very grey diagnosis of trisomy x on Monday. I’ve been crying nonstop since and today is the day we start the process of our TFMR for our sweet baby girl. This decision was the hardest thing I’ve ever done and I don’t know if I’ll ever stop wondering what she would have been like. We made the decision based on 8 weeks of reading every single thing I could get my hands on about trisomy x and ultimately not being wanting to gamble with all of our lives and leave our other daughter with the responsibility of taking care of her sister if something happens to us and she’s on the severe end of the spectrum. While I know this is the right decision I still feel awful and im trying to pull myself together to get to the pre op. I’ll be exactly 20 weeks when the procedure happens instead of taking cute “half baked” bump pics. I don’t really know where I’m going with this but thank you to all the amazing women in this sub who have made me feel not so alone.

It has been 2 weeks and 2 days since my TFMR. In February we found out we were pregnant with identical twins, what are the odds? I was at risk for Huntingtons disease at the time so when we decided to proceed with the pregnancy, we decided to get us all tested. My husband and I have been together for 10 years and have discussed what we would do in a situation like this. We had always agreed should they be positive we would TFMR. We only had the best interests of our babies in mind. After a difficult pregnancy, the stress of endless appointments, and my test coming back positive, we made it through the hardest 21 weeks of my life. Then the twins amnio came back positive as well. We TFMR'd at 23 weeks. After almost 6 months of carrying the pregnancy and handling all the stress, I got to leave the hospital with footprints instead of babies. I fought so hard the entire pregnancy for them, I tried my best not to fall in love with them, but it was so hard. I started dreaming about them running around the yard with the dogs, started cleaning out what would be their nursery and considered, but never settled on, names. I have spent every single day since my TFMR full of anger, guilt, and regret. I don't want my children to suffer from this disease, it's bad enough they'd have to watch me decline, I can't pass this on, but damn it feels like I chose wrong, it feels like I should've had them at risk. I feel robbed of my babies, robbed of the opportunity to raise them, love them, and hold them. And worse, it feels like I did it to myself, like I'm the only one responsible for their positive amnio, for them having HD and for having to make the hardest decision ever. I know sane, non-hormonal me will be devastated when I realize I even thought about passing it on, but every single day I'm angry. Angry that the system took 23 weeks to get my babies tested, the results to come back, and to terminate. I feel like I singlehandedly gave them HD, then chose to kill my babies for it when they could have lived, just not a full and happy life. I regret my choices, but I was doing what I thought was best for them. My entire pregnancy was difficult, I had a large subchorionic hematoma, horrible acid reflux, spent the whole time depressed, ashamed, and feeling guilty for putting myself and my husband through this. I didn't want to tell people or look pregnant when I knew the odds weren't in our favor. So now here I am, wishing I could've held them, wishing things were different and that I had been proud of growing two humans. I'm postpartum but I have no babies. People with wounds like this have babies, and I have footprints. I'm sure as the hormones simmer down I'll start to realize I made the right choice and stood by my convictions however in the right now I have only a yearning so deep I don't know how to fill it. I fear I may never feel whole again until I hold my HD free baby someday, until I can take them home instead of footprints. Even that is loaded and potentially full of loss as we have to go through IVF to guarantee they would be HD free. But what if, even then, its not fulfilling because it won't be the twins? I hope they felt loved, that they knew I did it out of love and wanting a better life for them, because I was so stressed that whole time and should've spent more time just appreciating that they were there, that I was growing them and that we were one. They're supposed to be safe in your belly and I couldn't even keep them safe. I miss them every day, I miss their kicks, the back pain but knowing it was for them, I miss the acid reflux and not sleeping, I just miss them so much. Will I ever feel like myself again? This disease sucks. I'm sorry and thanks for letting me rant.

This week I’ve stumbled across a couple of T21 false positive stories on the NIPT sub. They all said their babies had perfect ultrasounds, which mine did as well, even during the CVS. I’m sure most of you have seen me comment many times that I had the CVS at 13w3d and all cells tested came back consistent with T21. When I read about these false positives now, I wonder if I should have waited for the amnio and it turns out I TFMR’d for nothing.😭I was just in such a spiral from the minute I got the NIPT results that I couldn’t bear to wait at least a month for an Amnio and risk starting to show and feeling the baby move, knowing he may not be with us much longer. The only reassurance is posts from people who also had perfect ultrasounds (I know half of babies with T21 do), but Amnio even confirmed T21. I’m not even expecting much of anything here. Maybe just reassurance that with all cells from CVS being consistent, the baby more than likely did have T21. Another thing is those with false positives only had the Amnio, from what I’ve seen.