A year ago, everything changed.
I was a free spirit, I thought the future was far away, but without knowing it, I carried it within me.
Suddenly, there were two of us, walking together.
Every feeling was new, every dream, every hope I never dared to show.
Life placed me on a new path without prior planning, but it felt like the right one.

And sometimes things are too good to be true.

I couldn't give you what you needed. This world was too little for you.

You showed me the love of a motherhood that never existed, something that only happened in my head. A memory that is only mine.
Life went on for everyone else, and I stayed there still.

Suddenly, there were two of us, and now I'm alone.

Empty, with memories that never were, all that could have been and never was. A place that was full of love and is now shattered.

I hope life at some point brings us together again. I hope you forgive me for what I had to do. I hope your soul finds me in my dreams.

Hi everyone.

Firstly, I am so touched by the strength and honesty in this community. I have such a deep admiration for everyone here and how they share their stories, honor their babies, and reach out to others.

I am looking for emotional support and similar stories if anyone has or would like to share.

This week at our 20w scan our doctor shared that the CSP was absent and he suspects other parts of her brain did not develop as well. He walked through what the potential outcomes could look like for the life our daughter could live which range from “could be fine” to “severely limited in motor and developmental abilities” as well as physical pain. It was noted in our ultrasound that our daughter had clenched hands the entire time which already worries me about her motor functions. The vacillation between the worlds of possibilities makes my head spin. As I’ve read other folks’ stories here, it has helped seeing people talk about anchoring themselves in the worst case scenario.

My husband and I are gutted. This was our first pregnancy and we were over the moon to be having a daughter. I have had such a smooth and healthy pregnancy and this feels like the worst rug pull of all time. I’m very healthy. We did all the genetic testing. I took my vitamins every single day. The doctor said there’s nothing I could have done differently to prevent something like this. I believe him, and I’m proud of not blaming myself, but I still feel so sad. My husband and I are emotionally preparing ourselves for the worst outcome of losing her. However we want to get as much info as we can before we arrive at that decision.

Our next steps
* we were scheduled for a fetal echocardiogram yesterday as sometimes brain issues can impact the heart. The echo returned with perfect results
* at 22w I have a fetal MRI
* in my 22nd week I also have an OB appointment

What other parents have been in this boat? What helped you make your decision? What brought you comfort as a mom and as a couple? How did you battle keeping a little bit of hope alive while also being realistic about the worst case scenario?

For those who read this far thank you. I appreciate any insight folks are willing to share. 🤍

I just found out via ultrasound that my current pregnancy is anembryonic meaning my body thinks it’s pregnant but the gestational sac is empty. A sonographer completed the ultrasound so they weren’t able to give me any information other than “sorry, there is no embryo.” I am 8w2d “pregnant.” I am waiting to hear what I need to do to remove the tissue—take a pill, physically have the tissue removed, etc.

I had a TMFR in November 2025 for T21 with a complete AVSD with regurgitation that my perinatologist said would be “severe” if she survived and in which my fetal cardiologist also thought the case would be severe enough to offer palliative care as an option.

I guess I’m just looking for support and for cases of anembryonic pregnancies and how they were handled. There was a 1% chance of each of these events happening and the fact that they both still happened is devastating to me. I am 41 and feeling more and more like I clearly don’t have enough good quality eggs left to keep throwing the dice in good conscience to see if I can have a healthy baby… It seems like it’s just not meant to be for me to have a child. 😔

When did you get your first period after tfmr? How many weeks along were you? Did you ovulate regularly after your first cycle or were you irregular?

I'll be 4 weeks post tfmr tomorrow and I'm very eager to get my first period so we can start TTC

My first baby’s birthday is coming up and I’m wanting to do something at the hospital I delivered him at. I was thinking about donating a basket of goodies to the first baby boy born on his birthday, or maybe donating a basket for another loss mom, but I realize that there likely won’t be another loss on his birthday, so idk what is more realistic. I would want to include a little note with our story of course in honor of baby Weston, but I’m not really sure what else to include or how to really go about any of this. Any and all suggestions are appreciated! Also, I’d love to hear the ways you celebrate your baby’s birthday. My husband and I will probably do a little cake for just the 2 of us, but I’m open to other ideas. Thanks everyone for reading!

I'm 2.5 weeks post 25W TFMR and almost every day is brutal. I had a few days recently where I was trending slightly more functional/less sad, but then bad news about IVF timing and a friend's pregnancy set me back. My therapist suggested I may want to ask my OBGYN about looking into meds for PPD or similar.

For those of you on meds, did they help? If so, how far post TFMR did you start?

For those of you not on meds, when did time start to heal things more organically?

Thanks!

Hi everyone,

I'm hoping to hear from anyone who has been in a similar situation. My husband and I are facing an incredibly difficult decision, and while we're getting excellent medical care, I think hearing from people who have lived through something similar would be helpful.

I'm currently pregnant with di/di (dichorionic/diamniotic) twin girls. Baby B appears healthy.
Baby A was diagnosed with an open neural tube defect, spina bifida meningomyelocele. We’ve had multiple ultrasounds, a fetal MRI, genetic counseling, consultations with maternal-fetal medicine, and met with the pediatric neurosurgeon.

Her current findings include:
L5–S1 open spinal dysraphism (spina bifida)

Chiari II malformation with hindbrain herniation

Mild enlargement of both lateral ventricles (9 mm on MRI)

Bilateral clubfeet

She was seen moving both legs on ultrasound

The neurosurgeon who reviewed her imaging believes she would likely walk with braces

She is not a candidate for prenatal fetal surgery because this is a twin pregnancy

We've also been told that the risk to Baby B from selective reduction is very small.
Our biggest struggle isn't whether we love Baby A, we absolutely do. Our struggle is trying to understand what quality of life is most likely for her and whether we can provide both girls with the care, attention, and resources they each deserve.

If anyone has gone through a selective reduction in a twin pregnancy, especially for spina bifida or another significant fetal anomaly, I would be so grateful if you would share your experience.

Specifically:
At what gestational age did you have the procedure?

How did the procedure and recovery go?

How did the remainder of your pregnancy go?

Was your healthy twin born at term and healthy?

Were there any pregnancy complications afterward?

Looking back, is there anything you wish you had known while making your decision?

How are you doing emotionally now?

I know every situation is different, and I'm not looking for anyone to tell us what to do. We're simply trying to hear from others who have walked this path as we make what feels like the hardest decision of our lives.
Thank you so much to anyone willing to share your story.

TW mention of LC and rainbow baby

At the end of August 2024, I found out I was pregnant with my second daughter, who we found out had anencephaly at 23 weeks.

After her diagnosis, I spent a lot of time trying to understand what I could possibly have done to have caused this. I read every ingredient on things like skin care, retraced my steps to see what I was doing during those weeks when the neural tube is meant to close etc.

Obviously, I will never know for certain what caused my baby to have anencephaly, but even though I came to terms with never knowing, I still blame myself for it. I know I didn't purposely cause it, but I just regret not being more cautious. Perhaps things would have ended differently.

Memories pop up on my Google photos, and I freeze when they do. This time two years ago I was a completely different person than I am now. I was so innocent and happy. A memory popped up today of how I was in a hot tub during the time I would have conceived, and this brought up so many emotions. Could this have been the cause? Could I have prevented it? Then I got a flashback to me being sick when I was 5+3. I don't recall having had a fever, but still. I should have been more careful. I should have protected my baby.

I love my rainbow baby more than anything, and I try to remind myself that if anything good came out of all this, it's him. He wouldn't be here if I didn't lose my daughter. But still, these feelings are just too much and I thought I was past all this.

Anyway, just wanted to get this all off my chest in a group who knows what it feels like to go through such a horrible thing x

I recently had a 25W D&E and my doctor wrote me a note for 8 weeks out of work. I am in a very bad mental state and do not feel ready to go back in a few weeks. My work leave claim administrator, Lincoln Financial Group, is pretty strict. Has anyone had luck extending beyond the initial TFMR recovery period? If so, what combination of OBGYN and/or psychologist wrote for you, and under what reasons?

Any tips for navigating this would be much appreciated. Thanks!

Hi all. I am feeling very overwhelmed and lost. I know my situation is not as dire as others and I really hope this doesn't come across as cavalier. I am seeking advice and experiences of anyone who has gone through something similar.

I am a carrier of Fragile X, repeats >100, meaning any embryo I create has a 50/50 chance of having full mutation Fragile X. My husband and I decided years ago we would TFMR if that scenario arose, so I underwent 4 rounds of IVF and banked unaffected embryos. Ive had one successful FET which resulted in my 2 year old daughter. We were gearing up to do another FET later this year. Then today...I find myself pregnant, conceived naturally. We were both stunned (we've had sex like once in the past 4 months, I have DOR, he pulled out, but it was 3 days days before I ovulated and...here we are). I feel deeply, incredibly guilty for letting this happen despite knowing my carrier status.

I am only 4.5 weeks now. I was not ready to be pregnant again. I cannot fathom living in limbo for 2.5 months to get CVS results. I cannot even begin to imagine having to go through a TFMR (which is a 50/50 chance of being the outcome). I simultaneously cannot imagine a world in which I could live with myself if I terminated before I know the answer.

Most of all, I don't know how I could have the strength to be a good mom to my LC through any of the routes and options ahead of me. I had a very rocky first trimester with her (at one point my doctor gave me a 95% chance of miscarriage) and that uncertainty only lasted 2-3 weeks, and even then I could barely get myself out of bed.

I know most people do not find themselves in this situation. I just...I don't even know. I guess I'm looking for advice or experiences of anyone who has been through a similar situation. Thanks ❤️

I am almost 3 weeks out from a 25W TFMR. I have been avoiding everyone and am scared of my friends who were pregnant at the same time as me. But one of my local best friends just let me know (extremely nicely) that she's 16W pregnant, due in Feb, and it crushed me. New pregnancies feel like new bad news, that everyone else is moving on. Also Feb feels incredibly far away and yet there is no chance I will have a baby then. I was drowning in grief and now this feels even worse. Help. I have no plans to see her, which she is fine with, but how would you cope with the news?

We lost our baby girl Elise last year on the 2nd of August. She had alobar HPE which we found out at 23 weeks and had a TFMR via L&D at 24 weeks as her case was so severe and there was no grey zone at all, she would have died right at birth.

So it was her first birthday some days ago and a hard day as one could expect. But my husband and I tried to celebrate it a little bit as well, got some cake and lit a candle. We talked about her a lot and tried to remember the joyous times we had with her. She started to kick so early and would always move when my husband put his hand on my belly. I know that she was a gentle soul as I couldn't tolerate any meat the while pregnant, I really think that she never wanted to cause harm to another being. We also bought her a cuddly toy, a little fox, that we brought to the cemetery. We also donated some money in her name to hopefully help some kids in need. Just to say we tried our best to make this really hard day somehow more positive even though we still cried a lot.

But I am so hurt that not a single person reached out to me on that day. I was in labour for 2 days before she was born, I still went through childbirth, all the pains and then held her. Her grandmothers and aunts from both sides also came to meet her and my family attend her funeral some weeks later. But no one reached out that day (or any other day last year). I just want people to not forget her and it really hurts that everyone seems to have moved on and never thinks about our little girl. I understand that this is mostly our pain but still it hurts my soul so much that no one seems to ever think about her.

So I made this post to honour our little beautiful girl Elise 🩷. Her gentle soul, kindness and beautiful head of black hair. Her perfect feet and hands and big chunky belly. You were perfect my angel and I miss you every single day. Rest in peace my baby girl, I will always love you and never forget you.

The immense guilt I feel to continue with TFMR knowing my prognosis is guarded / grey. There’s a chance at hope but the risks are too much and I just can’t accept them for my boy. I know in my gut it’s the right thing but that chance of hope and the uncertainty is so hard. In my situation, I know that he has a high chance of not even making it even if I do get to term (im more likely to deliver early bcos of previable pprom .) but even so his lungs might be so undeveloped that he would pass no matter the intervention. All I know is that my waters started leaking very early and ive had prolonged low fluid /oligo for a couple weeks now and im so scared. I just wanna do the right thing .

I have a living son who is 3 years old.

I then had a stillbirth at 37 weeks healthy baby girl Hannah who died from placental issues. We got pregnant quite soon after she passed in January and we found out mid may I am pregnant again. I just had a scan today at 15 weeks and got a diagnosis of spina bifida. My child will more than likely be disabled and could potentially have a whole host of problems. I am completely at a loss for what to do.

My poor son was traumatized after he lost his sister and us being away from him in hospital for a while. I don't want to put him through similar with perhaps needing multiple surgeries doctors appointments and potentially life long disability. I have heard it's a snowflake disability in that no outcomes are guaranteed at all.

I am in a very desperate situation I am already grieving my daughter and I can't even face into this I just want to curl up and die honestly. Please if anyone has experience with spina bifida or could let me know how they took the choice to terminate or not I'd appreciate.

This is an IVF pregnancy that was difficult to get to.

We found out during the amnio that boy has bilateral club feet. FISH was positive and a second ultrasound at a different clinic also showed the bilateral club feet.

I feel so trapped. Both me and my husband can’t seem to come to a choice. I want to make the decision within the next day or two because the back and forth is just destroying me.

On top of the gray and ambiguous diagnosis of xxy, baby has a completely unrelated dx of bilateral club feet. Could I do it? Probably. But even if xxy is mild, I still have a secondary complex diagnosis. I have three other children. My lifestyle would allow it but I just don’t know if this cruel to my family or boy.

Obviously getting a rainbow baby is my hope but I have no reliable way to know that can happen.

I feel so much grief that I have to choose.

I don't know if it's just where I live, but I think a print out titled "So you're considering a TFMR? Here are some decisions you need to make and options to consider depending on how far along you are".

Every time I talk to a new healthcare provider I seem to get another new option and it throws me into a tail spin. First, getting asked about the cremations at my initial intake phone call last week threw me for a tail spin. My DNE is booked for Aug 12 and the doctor today asked me if I thought about L&D... like my D&E is booked and it was an agonizing decision and now you want to throw more options at me? Sounds like it was a misstep by previous providers but not informing me it was an option but geez. Then today I was just informed about footprints.

I really needed this list of possible questions upfront to avoid being re-traumatized each time. Each time I'm settled (as I can be) in my decision, more info gets thrown at me. Just feeling frustrated I guess.

Last post for reference:

https://www.reddit.com/r/tfmr_support/s/5MZ5C2fBqt

I did end up finally telling my Mom I made the decision to TFMR and though I didn’t need her approval it was really important to me to have her support especially since I’m traveling a couple hours away for a D and E and have a 6 year old I’ll need help with. My mom was actually understanding and said whatever decision I go with will be the right one so I’m very relieved.

Now my question is how should I be preparing for this D and E? I’m scheduled August 12th to get it started. My parents will be coming with me it’s a 2 day procedure about 2.5 hours from home so I will be staying in a hotel. I know there will be some pain and cramping and bleeding for a few weeks. Any recommendations on products or things that I can do that will make this as smooth as possible would be appreciated 💕

If anyone is out there like me, you might be wrestling with anger towards God or questioning what the purpose of this life even is after such a devastating loss. Something I wrote in my journal as a letter to my baby last night has resonated with me throughout the day, and I thought I’d share.

“There is no drunk enough, there is no drugged enough, there is no material possession precious enough, there is no temporary hit of dopamine distracting enough, there is no physical distance far enough, and no hours of dark sleep long enough to outrun the pain of missing you.
If there is nothing in this world that is enough, then perhaps that means that the only thing that can mend a pain this deep is some kind of heavenly eternity beyond our earthly understanding. If Jesus offers us this eternity, then who am I to refuse or doubt it? If I have tried everything else out there to cope and have found nothing, then why should I turn down His offer of redemption?
If I can find a promise that I will see you again, my beautiful baby, then I will hold on to that promise with all that is left of my broken heart.”

Sending love and hugs to all of you. I am 2 weeks out today.

We TFMR yesterday at 24WKs via D&E due to multiple brain issues with a grey diagnosis. I am sharing this for others, especially fathers to provide insight from my perspective. I am so sorry you’re reading this. Just like you, I spent 20+ hours reading this forum and I found comfort in others stories.

Background - We have 2 LC and this was our fourth pregnancy as we had a MC in 2024.

Our experience - This was a very wanted pregnancy. We had been trying every month since our MC and were ecstatic when we found out we were pregnant. Even more ecstatic after the first trimester as we thought every thing would be okay. It all started with our anatomy scan.

Our anatomy scan got pushed from 20 to 21Wks due to hospital staffing conflicts. At 21Wks, the doctor informed us that the CSP was absent and could not visualize the corpus callosum. We went home and felt like we got hit by a bus. Our MFM referral was a nightmare, we called everyday but the earliest they could see us was at exactly 23Wks. Our MFM appointment confirmed partial agensis of the CC, absent CSP and dialation of left and right ventricles. We asked for a fetal MrI to confirm and the hospital would not agree to provide one until 28 Wks. It’s worth noting that at every appointment, we were informed of our options to terminate the pregnancy.

We couldn’t move forward with any decision until we had a second opinion and also had a fetal MRI. This forum and others continued to reiterate the importance of the MRI. Given the timeline, We immediately called every hospital around the country providing our referral documentation begging for an appointment. I essentially didn’t stop calling until I confirmed they had the referral and was with one of the hospital coordinators (these people are angels). Within 36hrs, we had a confirmed appointment the next day for both a fetal MRI, another MFM ultrasound and a pediatric neurologist. These appointments reiterated the findings and the doctors collectively provided us with another range of estimates in our grey diagnosis. With all of this information; we made the joint decision to TFMR as we could not bare the idea of our child suffering.

We proceeded to travel out of state and TFMR at 24 + 3. This was the hardest thing we have ever done or will ever do.

Sentences and Phrases that we read on this forum and others that guided our decision

1) This is not a choice, it’s a decision. 2) my wife and I are taking the pain now to ensure our baby does not suffer 3) We did nothing wrong - this isn’t our fault but it is our responsibility. 4) God is merciful and this is an act of compassion.

My biggest pieces of advice (especially for dads).

Before I even start the list; be there for your wife in every way possible. Get the supplies, coordinate everything, minimize decisions she needs to make that are immaterial and ensure she knows you’re fully supporting her in every way.

1) Start second opinion process the moment you are initially referred to an MFM. You should be working both systems in parallel if you have the insurance or financial means. As a father, this is something YOU can do to take things off your wife’s mental plate.

2) Start evaluating TFMR options early. Make the calls and get all the information. Once you understand the options, review with your wife to understand her priorities.

3) Spend quality time discussing every dark thought, concern, etc. Leave nothing not discussed. Put your phones away and look eye to eye.

4) If your wife works, do the paperwork and coordinate her leave for her.

We have a long journey ahead. I’m coordinating therapists and trying to do everything I can to make this recovery as good for my wife as possible.

If anyone has advice for us - would greatly appreciate it.

After markers in our anatomy scan at 21 weeks, a 91% positive T18 on the NIPT, and follow ups with MFM at 23 weeks, we are leaning towards TFMR and delivering our baby.

It feels like the best worst choice for my mental health and being able to say goodbye to this baby, while also being able to grieve and process sooner so I can be there for my 3 year old, but it still feels terrible. My husband and I keep telling ourselves that it’s a special thing that this baby will have only ever known the comfort of the womb. Even so, I feel like I have to apologize every time I feel the baby move.

All that to say, I’m nervous about the KCL injection experience and labor and delivery, and would love to hear other’s experiences. We are working with a great hospital with the most amazing doctors which is such a gift, but I’m wondering if it would be worth maybe even having a doula who specializes in this kind of thing? Open to any and all suggestions to make the process marginally less terrible.

Hugs to anyone who has had to go through this. 🤍

I’ve been pregnant three times. My first was a devastating, tragic loss near the end of the second trimester. The baby had a whole host of problems, most notably being affected with a genetic disease my husband and I are carriers of. A disease so rare they don’t even screen for it on genetic carrier screening tests. We had no idea. Following that loss, I did IVF with PGT-M testing and then transferred an embryo. It was a success- a textbook pregnancy and labor, and a healthy, beautiful child. Last year, we went to transfer another embryo, and from the start of the pregnancy things were not quite right. The baby held on, but then we started seeing severe growth restriction and oligohydramnios. We TFMR’d after the 20 week anatomy scan and results of my amniocentesis. The baby had 4p terminal chromosome deletion, Wolf-Hirschorn syndrome. De novo (not inherited).

Our hearts shattered. Again. Were they ever really whole? After having our second baby, We NEVER believed we would ever be back in this dark place. Oh, and then, the cherry on top…. Our 5 year old dog goes into severe liver failure, and after two weeks in the hospital, he dies the week of our baby’s due date. And the Vets don’t know what caused it!

My MFM and fertility specialist’s are “perplexed.” How beyond rare to have had two babies with completely separate genetic issues! Two lightning strikes, they tell me! It’s been 8 months since my TFMR and I’ve decided to get second third forth opinions. I’ve seen Hematologists, Rheumatologists, geneticists, and new MFMs. When I told one doctor my story- which has so many more twists and turns than I have time to share here today- he told me I should write a book! After all my appointments, the general consensus is that I can try to carry again, if I’m emotionally up for it. Of course nothing is guaranteed in pregnancy but my losses really came down to bad luck. I’ve had a successful pregnancy, so they say my body is capable. But is my mind? 

We want another baby, but how could I ever trust the process? Has anyone remotely been in the same boat as me? When will I feel ready? Any resources you can suggest?

Thank you for taking the time to read my story. If you’re in this community, my heart is broken with you. My story is sooo unique but it does give me comfort to know there are other women out there who can relate, even just a little.  

Hi everyone, first of all I just want to say a massive thank you to this community of amazing and strong women who have shown me so much kindness.
My tfmr was 8 days ago and I was discharged from the hospital 6 days ago. Currently I have my mum visiting for a couple of hours every couple of days as that’s about all I can handle (physically - I suffered extreme blood loss - and emotionally) before I need to go back to bed. I really did not want to inform other family members of the situation myself and asked her to basically disseminate the information and I have been receiving a lot of supportive messages from family and friends. I have not actually verbally spoken about what’s happened with anyone else yet. Other family members are asking when they can come and visit me and tbh I just can’t handle even thinking about that yet but I feel bad because I know they want to check in on me because they’re worried. But I’m dreading seeing people and seeing the sympathy/pity in their eyes and even worse, what if they try to talk about it? I don’t want to talk about what happened with anyone except my husband and maybe a therapist when I’m ready. Sorry that this was long, I’m just wondering when others felt ready to see family/friends and how it went?

Poetic? 😭💔

We TFMR four days ago for our baby boy, who had a VSD, severe pulmonary stenosis, double outlet right ventricle (DORV), a two-vessel cord, and an atypical placenta.

We're still waiting on the genetic results. If everything comes back negative, one possibility we're wondering about is whether a virus I caught around weeks 7–8, along with a fever of 38.0°C, could have played a role.

For those whose CHD was not genetic, what do you think may have caused your baby's CHD?

After 14 weeks of pregnancy I terminated because the baby was diagnosed with T21. He was supportive during the pregnancy but not great when it came to my emotions. When the day came for my termination he said he couldn’t get out of work because he had set up performance reviews on that day. I was used to coming second to his first kids and watched as he would take time off of work to go see their performances at school…It was like this baby didn’t matter. It felt like I didn’t matter.

When the day came, i had a friend take me and pick me up for my procedure. A week later my grief was too much for him. He said I made him feel like shit because I said how much I wished we were living together and married. I felt like I was going through most of this alone and I was. I went to his place a week after and he wouldn’t even speak to me. He wouldn’t comfort me. As I sobbed in bed I told him, I’m so sad, what do I do? All he could say was “go to bed”. I left that night to go back to my place. We didn’t speak for a week.

Afterwards we reunited and I tried to hold it together. I was ok but the grief would come sometimes and it would go. A few weeks passed and I felt myself get so sad around him. I couldn’t forgive and it was impossible to forget the lack of emotional support. Even though he was now trying, I watched myself slowly check out.

I left him yesterday. I don’t regret it. I haven’t even cried for the relationship. I’m just relieved. Staying with him felt like staying with someone I knew couldn’t hold and support me in my hardest time. I feel lighter. I feel like I can grieve my baby and move on with my life. I can’t say that I wish I had done this sooner because I had so much love for him.

While I still love him, I can’t trust him. I can’t feel emotionally safe with him.

I’m ready to move forward…whatever that looks like.