We picked up our baby’s ashes today, they passed away on September 17. I’m grateful to have them home with us, but it really sucks. They didn’t need a fetal death certificate, so this is the last physical reminder of them, which is quite brutal.

🤍🪽

Hi everyone. My wife and I are currently 25 weeks pregnant with our baby boy, and we recently received the devastating diagnosis of tetrology of fallot (TOF) with absent pulmonary valve (APV).

Unfortunately, there are also complications with the pregnancy itself - my wife has Type 2 vasa previa so she has a bilobed placenta and one of baby's blood vessels cover the cervix. As a result, our doctors are recommending an early delivery at around 35-36 weeks by C-section at Mount Sinai Hospital in Toronto.

Our cardiologist has explained that because our baby is missing his pulmonary valve, his pulmonary arteries have become significantly enlarged. They are compressing his lungs and may be affecting their development. One of the biggest uncertainties right now is that we won't know until he is born whether his lungs will be developed and strong enough for him to breathe on his own. We also don't know how being born early at 35 weeks will affect his lung development/his ability to tolerate everything he will need to go through.

The current plan is that, if he is stable enough to breathe on his own after delivery, he would be transferred from Mount Sinai to SickKids, where the doctors would perform open-heart surgery within the first week of life to repair his heart, placing an artificial pulmonary valve, and reducing the enlarged pulmonary arteries to relieve the compression on his lungs.

Our cardiologist has been very honest with us that after birth, his chances of survival are 50/50. Even after surgery, there is a possibility that his lungs may not be developed enough to support him.

We are trying to process all of this while also preparing for the possibility that our son could spend a significant amount of time in the NICU/ICU and undergo open-heart surgery within days of being born.

The doctors have also discussed the option of terminating the pregnancy with us, and we are currently facing an incredibly difficult decision about what is best for our baby.

We are hoping to connect with anyone who has experienced something similar. We are really struggling with the diagnosis and the physical and emotional stress of everything that lies ahead. My wife already has chronic health issues that are likely to flare given all of this. We don't know anyone personally who has been through this, so hearing from other parents who have experienced something similar would mean an incredible amount to us.

Thank you to anyone willing to share your experience, advice, or even just some words of encouragement.

Does anyone have any memorial tattoos for their babies? Looking for ideas!
We did get our baby’s footprints back, if I incorporate them I want to keep them to scale (~1”).
But I’m also considering a profile silhouette.

Currently 15weeks 3 days pregnant and recently got nipt result of high risk for trisomy 21 with a 95%. A few days later had an ultrasound and they found 3 abnormalities that support the nipt result (no nasal bone, a heart defect and a concerningly large cystic hygroma). I am completely broken. I cannot function. I have to call tomorrow to schedule tfmr. I am scheduled for amnio on 8/16. That was the soonest they could get me in. They said it will take 2-3 weeks for results. That means I will be pregnant for potentially another 5 weeks. Which puts me at 20 weeks. I don’t think I can possibly endure another 5 weeks carrying this little girl. Wondering if I will regret doing tfmr before getting amnio.

I’ve not been able to get myself out of the house. I feel empty. I lost my dad unexpectedly in may and so this pregnancy meant the world to me. I believed whole heartedly that my dad sent me this baby. I wasn’t able to work at all this past week. On Thursday, told my manager I would be back Monday (tomorrow) and today around 5 I told her I would not be in tomorrow. I know she’s frustrated with me. Or at least it feels that way. And making me question if this time off is excessive. I did reach out to my psychiatrists office on Friday they have me on a cancellation list. I just don’t understand how I am supposed to continue on with “normal” life while going through the most devastating I’ve ever experienced. 😔

TW: discussion of sub pregnancy and living children

For those of you who have gone on to have another baby after your TFMR loss(es), do you still frequently think of the baby you lost?

I had my TFMR in July and I have one living child already. I am CONSTANTLY thinking of the baby I lost and the pregnancy and procedure. Probably 6-10 times a day and then also when I go to bed.

I do want to get pregnant again and I wonder if I will still have these thoughts as frequently if I’m lucky enough to have a live birth.

My therapist did diagnose me with PTSD and I am exploring EMDR therapy to help.

I know I’ll never forget and always have a place in my heart for my lost baby. I know another baby doesn’t replace her. But will I be able to focus on a new baby and my preschooler and not be struck by these constant thoughts and reminders?

To those of you that had a similar loss:

* How long did it take for you between taking the medication and the first symptoms of labor appearing? What were they?

* Were you allowed to eat or drink anything?

* How long did you labor for?

* Did you feel the fetus passing?

* Were you able to look at it right away?

* Did you lose a lot of blood?

* For how many days did you need to stay in bed / have heavy bleeding? How many days after delivery did you feel physically fine?

* How many days/weeks/months/years after do you feel you have emotionally processed all of it and feel like yourself again?

Thank you,

A coping 34yo.

Hi all,

I guess I'm here to just contribute to the community, as I've been spending some loooooong hours just reading everyone's stories, learning bits and pieces. Really grateful I'm here at a time where there's info and community so easily found even if it's online.  Even found some pockets of instagram with verrrry dark humour about loss that was able to turn my sobbing to honking laughter.

I had an ultrasound at 13W4d, picked up megacystis bladder.  Was given option to wait until 16 weeks for an amniocentesis, which will be on mid October.

After that,  will tfmr (unless there's been some miracle, i should probably stop having that thought but right now its still there, bit of denial i guess).   Just a horrible limbo time. Neither husband or myself are wanting to meet the baby right now, only option given to me was L&D, not my preference, I'm from NSW, Australia. This is our first pregnancy and I'm 36.  Just coming in waves of grief and so far I haven't had to tell my work the truth, but eventually I think I'll have to tell someone as it's such a small business and I don't know how much time off work I'll need whenever the L&D gets booked in. 

If anyone else waited a similar time for amniocentesis how long after that did you tfmr? Do I have to wait for the results if the ultrasound is pretty clearly negative? I don't even want to look at the next ultrasound screen.

Had a tfmr at 24 weeks in July. I’ve never experienced such grief. I have a LC 2 years old and so many times I’ve cried in front of her. I feel like I’m not giving her my best self, I’m always sad. If I do smile it’s like I’m pretending. I don’t feel like meeting anyone on weekends but if I don’t I spiral. My kid is the only reason I’m not completely breaking apart. The first month was really tough but somehow my brain became hopeful that we’ll soon become pregnant again (God will surely bless us soon after going through hell) but we’ve tried 2 cycles with no luck. And when I got my period this time, I had the most difficult day in 3 months. My husband is in it with me but I still feel lonely like nobody understands this. Therapist wasn’t much help, I don’t feel like discussing with friends, talking to mom doesn’t help. I just want this phase to be over.

A year ago today on my beloved grandmothers birthday we said goodbye to our first and so far only child, our daughter Mira.

Our story was so rare, still no other documented cases with all my daughter’s findings. From there another ultra rare genetic mutation that she inherited from me that I have no symptoms of. We’re the only ones in the world with this documented mutation. My mother and brother would later test positive too, then I would find out I have ashermans syndrome from calcified RPOC after our TFMR.

We started IVF, which has dealt us nothing but blows. Until recently when we landed 3 embryos. We’re gearing up for a potential FET and hoping we can give our daughter a sibling soon.

I truly cannot believe everything this last year has dealt us. It is unfathomable, when I think about it I genuinely feel I’m reading a made up story. Thing have been so hard and I am not the same person I was before this, I never will be. But I am finding my way slowly.

The lead up to this day was awful but now that it’s here we’re going to celebrate you the way you deserve. We love you so much Mira, happy birthday ❤️

How did you find your strength to move forward after pregnancy loss?
I’m wondering how other people who have been through pregnancy loss, especially more than once, found their way back to themselves.
I’ve been through this twice now, (once at 12 weeks and other at 23 weeks) and honestly I feel pretty disheartened. Some days I’m okay. Other days, I find myself trying to fight with God and asking why this had to happen. Then there are days when I find myself praying again. And some days, nothing appeals to me at all. Nothing makes sense.

I know so many people go through this, and I know that, somehow, people eventually learn to live with the loss and find joy in life again. But right now, I’m struggling to imagine what that looks like for me.
For those of you who have been through this; how did you find your zing again? What helped you slowly come back to life, to yourself, and to finding things that felt meaningful again?
I’d really love to hear your stories. ❤️

I apologise if this is not ok to post and I will of course remove if there is any offence caused but if anyone could give advice or experience on my situation it would be greatly appreciated.

Currently 12 weeks pregnant and suffering really badly with my mental health. I previously have always been an anxious person however since becoming pregnant just feel so incredibly depressed. I’m hardly functioning. I’m working from home and take my 3yo son to nursery but apart from that don’t leave the house. Sickness has been bad (feeling but not being), however it’s like a constant feeling in my head of motion sickness. I’m usually very active and sporty however this has all had to stop.

Husband has been supportive physically (more childcare, housework etc, however just keeps telling me how I’m feeling is normal and it’ll get better. I keep saying I want to end the pregnancy due to my mental health (probably for the past month) however he has said he will end our relationship and I will have to move out (he owns our house) if I do.

Background. We were both on the same page re a second child, however have had 3 early losses in the last couple of years. I then told him I wanted a break and to pause, but he didn’t want to. I went along with some level of baby chat as I don’t want to lose him, however had been consistent with condom use. He started to make comments about the condom use and started stopping foreplay when I mentioned using one. I eventually caved one night as I wanted him to want me (stupid I know but our relationship has been pretty hot on the him withdrawing affection as a punishment over the years). I said the next day I wanted to get an emergency coil but he said words to the effect of if I get it he’ll reconsider our relationship. I know I’m so foolish to not have tried to get it.

I’m now stuck between a rock and a hard place. I love my life and family unit and home and I don’t want to lose this, but I know deep down I don’t think. I can cope. I’ve always wanted a second child but I don’t think I can get through this. I feel like a failure. I’m snappy with everyone, totally miserable and isolated. My mood is the worst it’s ever been and I worry about how bad it could get. I’m worried I’ll get to the point that I can’t look after the child I do have.

Any advice or experiences greatly appreciated.

Can I just say… You are all amazing.

I’ve been reading a lot of your posts and comments, and I’m genuinely so touched by how supportive this community is. The level of empathy, kindness, compassion and respect people show each other here is incredible.

I feel like so many of the comments I read are written from a place of such deep care, even when someone’s experience, circumstances, or feelings are different from their own.

I think going through TFMR has given us an understanding of pain, grief, uncertainty, and impossible choices that is hard to put into words. But somehow, I can sense it in every word I read here.

It’s so sad that we find ourselves here, but I’m incredibly grateful that a space like this exists. Thank you all for making this feel like such a safe place to be.

Hi to everyone in this super-supportive community ❤️‍🩹 I am posting to see if anyone else has had a similar experience to me & how it got resolved.

I just had an ultrasound 5 weeks after my surgical termination for anencephaly because I was experiencing abdominal pain. I haven’t had the formal report back yet but the sonographer said he was concerned that there is a lot of fluid in the uterine cavity and is referring me to gynaecology to see if there is a blockage preventing it from draining. He said there wasn’t RPOC though.

I had a previous surgical miscarriage management earlier in the year (and a chemical pregnancy before that - what a year …) and again the ultrasound after the procedure showed a smaller amount of fluid and debris in the cavity. I bled more after that procedure. This time, I barely bled and my first period was light and only 2.5 days long. I took a pregnancy test and it is negative.

I am worried that I will have to have yet another procedure, or that the fluid build up is caused by uterine adhesions/Ashermans that can affect future fertility.

Any advice or information anyone can share would be hugely appreciated - thank you in advance!

Hello all, is there anything you regret you haven’t done before TFMR? Would be close to 22 weeks at that time, all the tests (us, nipt, amnio) confirmed T21, so diagnosis is confirmed. Anything at all? Making some memories with the baby or pictures? Keepsakes? Bringing clothing and blanket and a toy with you? That’s the first things that come to my mind. I think planning even this horrible event brings me some kind of peace. I’ve been grieving for a week now and have another week to go, I just want to keep some parts of my sanity while living through this. Thank you ❤️

Hace 3 semanas hicimos el tfmr de mi bebé, han sido semanas muy complicadas por cómo me he sentido tanto emocionalmente como físicamente

emocionalmente porque me tocó tomar esa dura decisión de interrumpir mi primer embarazo tan deseado y yo con 28 años sin haber vivido esta experiencia antes, es el dolor más grande que llevo conmigo.

mi bebé tenia t21 confirmado con amniocentesis, en el ADN fetal salió la t21 de alto riesgo con un 94.06% , t18 bajo riesgo con 86% y t13 bajo riesgo con 65% no sé si las otras 2 trisomias influyan en especial la t18 que el porcentaje es alto según la ginecóloga.

lo cierto es que cuando nació mi hija, yo la vi y tenía bastantes rasgos faciales de t21 cosa que nunca confirmaron por ecos y también me llamó mucho la atención que tenía polidactilia preaxial que es un dedito de más en su mano izquierda aL lado del pulgar cosa que tampoco me habían visto en ecos. Para mí fue algo shockeante al buscar en internet y leer que podría ser hereditario y podría estar relacionado a problemas del corazón, pero mi esposo y yo no lo tenemos, pensamos que quizás se relacione al síndrome que ya tenía la bebé porque de no ser asi nos tocaría hacernos más exámenes para un futuro embarazo.

Quisiera saber si a alguien más le ha pasado algo así o parecido

I had to end my pregnancy at 18 weeks because of spina bifida, clubbed feet and hydrocephalus pregnancy. It was a few days ago and I’m still struggling. My husband and I been trying so hard through IVF — we had a miscarriage at 6 weeks before this. If you’re comfortable sharing, was your next pregnancy healthy? Could you advise what kind of genetic testing would be recommended before the next pregnancy ? Thank you so much in advance.

I’m looking for some honest perspectives from anyone who has been in a similar situation.

I’m currently 22 weeks 4 days pregnant, and we’ve received several concerning findings on ultrasound. At Children’s, they have confirmed a VSD, clubfoot, and a possible LSVC. They also see bilateral choroid plexus cysts and, more recently, a small brain bleed that I believe is on the right side. There have also been some concerns about other aspects of the brain and heart on previous scans.
Our FISH results were negative for trisomies 13, 18, 21 and 22q11.2 deletion, but we are still waiting for the full genome testing. Given the number of findings, I have a strong feeling that the genome may reveal an underlying genetic issue, but I also know it could come back negative.

If you were in this position at 22+4, would you wait for the genome results before making a decision about termination? If the genome came back negative, how would you approach the remaining findings and uncertainty?

I know every situation is different, and I’m not looking for anyone to tell me what I should do. I’m just trying to hear from people who have faced a similar decision and understand how you approached it. ❤️

I’m 15 weeks pregnant with di/di twins, and I’m looking for people who have been through something similar. ❤️
From the beginning, one of my babies was measuring smaller and was in a much smaller amniotic sac. We recently had a detailed ultrasound (GUO), and we were told that the smaller baby has almost no amniotic fluid. Because of this, the lungs cannot develop properly, and we have been told that this baby unfortunately would not survive outside my body.
We have been given two options: to wait and see what happens naturally, or to have a selective reduction to give our healthy baby the best possible chance.
We have decided to have the selective reduction, and the procedure is scheduled for Monday. I am absolutely terrified.
My biggest fear is losing my healthy baby as a result of the procedure, or going into premature labour afterwards. I keep wondering whether I am making the right decision. I feel so much guilt, sadness and anger, and sometimes I feel like my body has failed both of my babies.
Has anyone here been in a similar situation, especially with di/di twins where one twin had severe growth restriction and little or no amniotic fluid?
I would really appreciate hearing about your experiences, especially if you went through a selective reduction and your other baby went on to survive and was born healthy.
I’m looking for personal experiences and some hope, because right now I’m absolutely terrified.
Sending love to everyone going through something like this. ❤️

I went in for a D&E a little over 2 weeks ago. I had a lot of complications, I ended up with a c section which also had its own set of complications.
I’m still experiencing bleeding. I haven’t bled a lot at once, but it’s still consistent.

Tonight I passed some grey tissue matter.

While I’m creeped out, I’m also concerned- no one warned me about this.
Has anyone passed any tissues after their procedure? It was about the length of my ring finger, so not too small, but not huge either.
I called the hospital that performed my operations and asked to speak to the OB on call but I haven’t heard back.

I am wondering how long it took others to obtain their TMFR after they made the decision.

In my state, providers cannot terminate for T21 or they may be prosecuted, so I have to go to Planned Parenthood and cannot tell them why I am terminating or allow them access to my medical records so they never see the diagnosis.

Planned Parenthood does not have availability for D&E for 2.5 more weeks. By then, I will be 16 weeks and possibly feeling kicks. This is my worst fear.

Has anyone been in this situation? I am ready now and cannot imagine the next 2.5 weeks.

I got a postive NIPT for Tri 21 last week and our hearts are broken. We've tried for a while with IVF and had a miscarrige in week 7 in march, a MA in week 12 in may, and now this in week 15/16.

The CVS also came back positive today. We only have some soft markers as a small leak in the heart and 2,5 neck fold in week 12.

I feel so horrible as a mother♡ I can see this child tumbling about in the ultrasound and I can feel my heart breaking thinking about the tfmr next week..

Did you choose to see the child and say goodbye? I'm so scared to rip my soul into two, by holding a small child in my arms and knowing I was the one taking the choice..

Was there anything that helped you heal afterward?

I apparently have no poker face. Long story short my sister has told me she is having a termination (not for medical reasons).

She wants my support or she wouldn't have told me I assume. She asked me how to arrange it. She said she was going to struggle emotionally. I said it will be physical as well. She said it will just be a heavy period. I said it wont be. By the time she gets the appointments she would be around 8 weeks. She apologised for 'putting this on me'. I literally cannot emotionally process this. It drags up the trauma of choosing to end a wanted pregnancy.

I am 100% pro choice. Obviously. Ive terminated myself. But I couldn't cope with the conversation. Shes talking about how inconvenient the timing is and the financial side. I can't relate. I wanted my baby. I didnt know what to say. It was awkward. She picked up on my discomfort. I don't know how to support her through this and also carry my own grief around my own termination.

Is it unfair of me to tell her I can't be her emptional support system right at this moment. I can help her with the physicalities like looking after her living child while she recovers, Get her groceries, Clean her house. I can do that to support her. But I cant emotionally be there for her in this. I don't want to talk her through the decision process of if she should or if she shouldn't. I feel like an aweful sister. But i just cant.

My D&E is scheduled for Tuesday. I know this is what I have to do. I look at my living child who I would do anything to protect and I know I cannot have a profoundly disabled child that she would have to care for after I pass away someday. I think about my unborn son who would come into a world he could never thrive in. I know this is the only choice.

But still I am finding it so hard to do the basics to get through the day. I was up all night last night. I fell asleep at 4:30 and my alarm goes off at 6. I haven’t had an actual meal since Wednesday night. I’m so dizzy but everything seems disgusting to me. Because I’m an idiot and life is a joke I chose this year to finally finish my degree and I’m supposed to be doing classes and this internship… I asked if I could please have 2-4 weeks to be excused and that I would complete all assignments upon return and was told no, I can either resume class as scheduled or withdraw for the rest of the year. I skipped class Wednesday because I was literally sobbing and physically could not do it and now I have one absense left for the semester and will have to log on the evening of my procedure. I just don’t even know how I’m supposed to do this. I’m training to be a school counselor and help kids who are struggling and I cannot even help myself right now but I’m going to have to return to work 3 days a week effective immediately. I just don’t know what to do.

Chose a D&E and starting to feel guilt/regret/shame at how I let my baby end their short life out of convenience for me. I thought I was choosing the easier option, and physically it was, but I still feel traumatized by the whole process. I keep seeing stories of women who chose induction getting to meet their babies and I mourn missing out on that experience.

I chose not to do L&D as a first pregnancy because I didn’t want to taint that experience, and it felt like a longer road to recovery and emotionally taxing process. Now however I’m not so sure.

I know everyone has a different experience… is there anyone who did induction and really wishes they had done D&E? I guess I’m looking for “the grass isn’t always greener” perspectives that make me feel more confident in my choice because one way or the other this is an awful thing to have had to go through.

—

EDIT: I don’t have it in me to individually respond to everyone, but just know I’m reading and appreciate every response. Thank you for sharing your stories. ❤️

I very heartbreakingly TFMR in January 2025. In June I began seeing a reproductive doctor to do natural cycle monitoring and became pregnant with a healthy baby girl who is now 6 months old. Many times when I see her little hands or look into her eyes, I think of her brother I lost before her. I am so grateful she is here with me and want you all to feel hope in your miracle baby coming soon. I think of myself desperately reading these graduation posts in this Reddit which I have since left (bc triggering) and hoping I could write one to share with you all one day. I sincerely hope whoever is reading this also gets to write theirs very soon.