r/tfmr_support

I had my D&E about a week ago. My best friend and I were pregnant at the same time! She was 4 weeks ahead of me. We would've both been having a boy and our third child. When I told her about having to terminate due to T18, she was so so supportive and she checks in everyday and I love her for that. I told her not to hide her pregnancy from me because I am so excited for her and can't wait to have another little buddy around.

Today is hard tho. She shared on socials about "Half Baked" meaning she's halfway and I just stated sobbing thinking about where I would be in my pregnancy and how I won't have that. I guess I don't know where I'm going with this but just needed to vent. 😔💔

My husband (37M) and I (35F) chose to tfmr for spina bifida myelomeningocele in December. We don’t have any kids yet. This was our third pregnancy, the first one that we reached the second trimester. To say we were devastated is putting it mildly. Our son was so wanted and desired, and still is so loved. Having to make this decision broke my soul in ways I am not sure I’ll ever recover. But I don’t regret it. I know my decision was made out of love and that I was trying to protect him from a life with a disability that would bring him so much pain and suffering (surgeries, procedures, limitations, countless therapies)…

My sister and brother in law (my husband’s brother) were pregnant at the same time we were (they were 5 weeks ahead), also with a boy. The live in another country, so it’s not like I have to seem the frequently, but they are a pretty close-knitted family, and do almost weekly FaceTime sessions (my MIL, FIL, my husband, his brother, and the wives). Well, ever since everything happened I have avoided these sessions and my husband has been respecting it (making up excuses as to why I can’t join). When my SIL was pregnant and I wasn’t anymore was already painful. Now that their son was born and my arms are empty, it’s torture. It’s like a front-row seat (via FaceTime) of the life I should be living… the life I desperately wanted to be living. And I don’t want it… I don’t want to witness it, I don’t want to hear about how cute their baby is or the milestones… I don’t want to see pictures… I don’t want to see how happy they are and how the whole family is falling head over heels for the baby.

I know it’s horrible to say these things… and I know I’m wrong and that the family loving this baby is obviously expected and a good thing… but I still don’t want to see it and be around it.

Has anyone ever faced something similar? And were you ever able to not resent other couples with their perfectly healthy babies?

We went for my anatomy scan Thursday and after a perfectly normal 12w ultrasound and low risk NIPT found that there is severely low amniotic fluid. I was sent to MFM yesterday and am not leaking fluid, but the doctor was not sure what is causing the lack of fluid. She explained if it doesn’t increase by Tuesday, the prognosis is fatal for our baby girl. She didn’t seem hopeful and I am realistic and understand the probable outcome. We would TFMR as the baby’s lungs would not develop. I am horrified, heartbroken, and absolutely crushed. The sight of my husband’s quivering lip and tears keeps replaying in my head- we are devestated. Going from being told we are having a healthy daughter to being robbed of that overnight, it’s a nightmare. Life seems so cruel and I am just wondering how to cope with this, how to cope with telling everyone in our lives what is happening. I pray that it is possible to have a healthy pregnancy after a D&E, and how do I even find the strength to get through that procedure?

How did you make the decision to try again or not after losing your baby? I'm 35 and about 6 weeks from termination for T21. We already have 3 healthy children so I'm kind of leaning on not trying again-due to that and other reasons. He was supposed to be our last baby. I think my husband does want to. Either way I'm giving myself more time to grieve and focus on myself and our family for a bit but it is on my mind a lot. If we do decide to try again I'd rather try sooner than later but I'm scared. Has anyone had the random chance of T21 (not genetic) happen multiple times to them? The opposite and had a healthy baby after?

Hi I had my D&C 5 days ago, I dont remember getting any specific instructions from my doctor on pool or baths or may be I was too blurr. My bleeding stopped 3 days ago. Spotting stopped 1 day ago. Today while taking my 2 year old toddler to the pool, I totally forgot and submerged myself in the pool for about 20 minutes. No swimming but just sitting in the kids pool.

I realized my mistake once I was out. Immediately after, I only had one episode of spotting which was bright pink, and then its been couple of hours, no other bleeding or spotting. I had just completed the antibiotic course today from the D&C. I am so concerned, if I have put myself at risk majorly?

Hi everyone! I’m posting here because I am completely broken and overwhelmed. I’m currently 13 weeks pregnant after a long and difficult IVF journey. This is my only way to have a baby, and I’ve already been so "statistically unlucky".

We’ve just had a diagnosis of Trisomy (confirmed via CVS and full spectrum bloods). I now have to navigate a termination, and I’m getting completely conflicting advice from my doctors and I don’t know who to trust. 

Fertility Doctor:
My fertility consultant at CRGH is strongly pushing for a medical abortion. They are worried that a surgical (D&E) procedure at 13 weeks carries a risk of scarring the uterine lining (Asherman’s) or damaging the cervix, which would mean needing a stitch (cerclage) in any future IVF pregnancies. They want to protect the "environment" for my future transfers at all costs.

NHS hospital:
However, the NHS hospital says most people go surgical at this stage because it’s quicker and more definitive.

My Dilemma:
1. The Mental Aspect: I feel like surgical would be much better for me mentally. I want it to be "one and done" so I can have closure and start to heal. I’m petrified of the "mini-labor" at 13 weeks and having to be "present" for the physical process of the medical route.
2. The Timeline: I know that medical takes significantly longer. I’m told I could be bleeding for up to 4 weeks, and there is a 10% risk of retained tissue which would delay my next IVF cycle even longer. I want to reset my hCG and get back to IVF ASAP.
3. The Risk: Despite the mental benefits of surgery, I am terrified of being that "unlucky 1%" who ends up with a damaged cervix or a perforated uterus, especially since my IVF doctor is so against it.
I want the quickest but safest route back to IVF. I can't bear the thought of "breaking" my uterus and ruining my only chance at a baby, but I also don't know if I can cope with the long, drawn-out trauma of the medical route.

Has anyone else been through this with CRGH or another IVF clinic?
• Did you go medical or surgical at 13 weeks?
• Did you find surgery better for your mental health, or was the risk of scarring too high?
• How long did it take for your hCG to return to normal so you could go again?
• If you went surgical, did it actually affect your next transfer or pregnancy?

I feel like I’m choosing between my mental sanity and my future fertility. Any advice or experiences and advice would be so appreciated ♥️

We had to TFMR after our anatomy scan at 20 weeks. Multiple organs were formed incorrectly so things were found incompatible with life. And cord cysts and a single vessel cord was found, which made the doctors believe there was an underlying genetic issue.
Our NIPT came back low risk at 15 weeks and we had microarray testing after TFMR which also came back normal, so the chromosomes were all normal. My infectious labs came back normal too.
Anyone in the same boat? Does that mean the only option left was that there was a single gene change? Or environmental issue? Are these just usually random luck of the draw situations?
I cant stop thinking of reasons why. My husband and I were drinking when we conceived, could that have caused this? I can’t even enjoy a glass of wine right now because I feel like I may cause this to happen again and I can’t help but put somewhat of a blame on myself. It’s hard to accept this happened for no reason. We are getting more genetic testing done but even my genetic specialist warned me multiple times we most likely will not get an answer. That’s crazy to me 😭

Just need to vent to this group because I know you all will understand 🫶

I’m 7 weeks out from my tfmr and the loss of my sweet baby boy, Leo. On top of that, my husband lost his mother just over a year ago so these two losses felt back-to-back. My mother and sisters (who all have young children) started a group chat to plan a get-together for Mother’s Day. I sent a very kind text saying how much we love them and appreciate them all as mothers, but that my husband and I are struggling with these two losses and the day feels heavy this year so we won’t be attending this time.

No one responded, and two days later my mother reached out and said, to summarize: “I worry you’re letting the loss of your baby define you. My wish is that you will focus on the positives in your life. What happened is heartbreaking but I have learned that life will continue to throw you punches. The key is how you regroup”

WHEW. Guys. I almost lost it. To even suggest that missing ONE two-hour family lunch is “letting my loss define me” is mind-boggling. First of all, even if I spent the last 7 weeks in bed crying, that’s ok! This is life-altering trauma. But despite that, I went back to life and work as usual just a week after the procedure, attended all family/social events, and thrown myself into gardening and renovation projects. This might be my first time actually expressing that I’m struggling.

It’s giving “we are here for you always, as long as you do exactly what we expect of you without outwardly expressing your grief or making us feel uncomfortable 🩷🙂‍↔️” the audacity to tell me to be positive and regroup less than 2 months later is craaazy.

Anyways, all that to say - I am so grateful that we have this space to vent and support each other. I’m also so frustrated that this is such a consistent challenge in this community. People are so quick to brush this loss under the rug. The audacity of others to judge how we grieve continues to astound me. Sending love to all of you who are struggling this Mother’s Day - I love you and you are 100% justified in grieving ANY WAY YOU NEED. Sending you all some extra strength today 🫶

I’m 5 days post TFMR for T21, so I know this is all still fresh. The hardest part for me is thinking back to the few good appointments I had before the NIPT results. At our 10 week ultrasound, our baby was swimming around and throwing his arms out. We could see his heart beating away, and the midwife was so excited and taking pictures. She and other staff were congratulating us. I had appointments scheduled for nearly six months out and was given a packet with a lot of information to prepare. Now I break down every time I think back to those days. I posted about this elsewhere and I think some people took it as if I wished I didn’t have all the ultrasound pictures, but i meant it just hurts to look back on the happiness when we didn’t know what was to come. Has anyone else felt this way? I know things won’t always be this heavy, but right now Idk how I’m going to get through the rest of this year. 😭

I do plan on calling the nurse line and ask this question, but I’m a bit spiraling right now.

I took a walk for almost 2hrs just 24 hours after my D&E and D&C surgery at 13 weeks, was that a problem?

Would the long walk have caused any damages to my uterus or cervix?
If so, how can I find out whether any damage was done or not?

I’m a bit paranoid because that was the very first surgery I had in my life, but I needed the walk with my mom to chat for emotional support. :(

Hi everyone,

We had to do whole exome sequencing after our TFMR due to alobar holoprosencephaly, and I’m currently waiting on the results.

The genetics clinic emailed saying their clinical team is reviewing everything and that they’ll be booking a follow-up appointment to go over the results.

I’m trying not to read into it too much, but I can’t help overthinking…

For those who went through something similar, were you also asked to come in or have a detailed call even when results came back negative? Or is that usually only when something is found?

Would really appreciate hearing your experiences 🤍
The waiting is really hard right now.

We’re planning to do an embryo transfer after our recent loss. But before that, my fertility doctor had me come in for an SIS. They found that there was some product still left behind after my D&E. They are recommending I go back to my OB to have a hysteroscopy done.

I’m frustrated because I remember speaking with my OB after the procedure to ask if they were able to get everything and he reassured me that they were very thorough. How does this still happen? Does anyone know? Is it an error on the OB? Now I’m wondering if I should have someone else do my hysteroscopy.

I am 12 weeks out from my tfmr at 29 weeks. Pretty much the entire time since it happened I knew i wanted to try again asap. We have to do a new round of ivf to get pregnant again. I am almost 34 with no living children. I feel worried about my age, which is why I wanted to try again pretty quickly if i hope to have more than one. It is just so hard. I miss my baby boy still every day. He was so big already when i delivered at 29 weeks and i feel like he's constantly floating in my mind.

I would say I am pretty high functioning in my life, like I guess I am "okay". But recently, like maybe last 2 weeks, I have started having vivid unsettling dreams almost every night. It's enough that I have felt unrested many days. After talking to my therapist today, she gently told me that she's seeing some signs of depression. I guess it is the physical manifestation of my dreams and my brain trying to work through this trauma. I also spent a good amount of time with her talking about trying again. It's like I know logically there are no guarantees ever and also that my baby's diagnosis was random and has a low chance of recurring. I just feel really scared. I know i have to try to achieve what I long for in having a family. But I dread knowing how hard it will be on me. I wish I could be blissfully ignorant again of all the things that could go wrong. I am trying to decide between continuing forward with egg retrieval on my next cycle coming up, or giving myself a couple more months considering how sad i still feel. I just don't know how I'm supposed to ever be ready for this even though i do want it. I'm not sure what to do or what is right for me.

Hi everyone. I had my TFMR for a T21 pregnancy yesterday and wanted to jump on here to share my story and offer support for those who have gone through this or are currently going through it.

We learned unexpectedly I was pregnant on April 3rd. I never thought in a million years my two months of skipped periods was because I was pregnant. My husband had a vasectomy two years ago (and had gotten it checked three months after the procedure). I chalked it up to perimenopause or because I do weigh-training. I went to the doctor April 3rd to see what was going on. They did a pregnancy test for me on a whim “just to rule it out” and it came back positive. I was 12w2d. My husband and I were the rare 1% that got pregnant despite a vasectomy.

We have two LC, one is 3 years old and the other is 6. We were done having children and felt our family was complete. When this result came in though, we felt it was a miracle and a gift so we embraced this new development.

As if we already didn’t have a lot to process, flash forward a week and we received our NIPT results. We got a positive screen with a 90% chance for T21. I was shocked. Especially after having two healthy children. I was completely unprepared. I am 40 years old though and maternal age was mentioned after the results were shared.

We were able to get in for a CVS test three days later. We did a high resolution ultrasounds that showed a 4.53 MM reading for NT. They usually want this somewhere under 3 MM. A higher number lines up with T21 or a heart defect. That was the only soft marker noticed on the ultrasound.

I was convinced it was a false positive. I read so many stories that next week about false positives with the NIPT that I fully convinced myself the CVS would come back normal. Well, a week later, it sadly came back confirmed as a true positive. All cells were affected so it wasn’t mosaicism.

After a lot of research on DS and stories of TFMR for this diagnosis, we ultimately decided to TFMR. The awful thing about a T21 diagnosis is that you really have no idea what the level of disability will be until the baby comes. Given our ages, our finances, our ability to properly care for a disabled child, the mental health and well being of our LC… it all led to this decision. The ultimate factor though for me was that I did not want my child to suffer. I read too many stories about babies needing open heart surgeries within a year of life, childhood cancer diagnosis’s, feeding tubes, vision and hearing impairments, adult Alzheimer’s by 40 years of age… the list goes on. I would rather suffer through this loss and pain than have him ever experience a life in and out of the hospital.

The week in between our decision and the procedure was hell. I don’t wish that upon my worst enemy. So many thoughts and emotions go through your head. Fear… guilt… etc. All while still being pregnant and experiencing pregnancy symptoms. It is truly the worst part and place to be in.

My actual termination was pretty textbook. I could not stop shaking for about an hour while I was in pre-op because I was so overwhelmed by fear and sadness. No pain or much thought during the procedure as they sedate you pretty well. I don’t remember much of it actually. It’s pretty quick.

One day later, my heart is shattered and the emotions are high. I keep touching my stomach for a bump that is no longer there. The grief is overwhelming. Despite that, I know I made the right decision for my son.

For anyone out there who is also a Christian like me, you know this decision is not made lightly. I prayed a lot about this and told God I would rather have a hurt heart my entire life than subject my son to a lifetime, however long that would have been, of pain and suffering. I feel peace spiritually that God heard me and took my boy home to Heaven to be made well. I just wish it could have been on this side of Heaven so I would have been able to hold him and love him here for a while. The decision to TFMR is one no parent should have to make. But it’s one we make out of ultimate love and compassion. It’s not a choice really. Either way you look at it will result in a lot of heartache. I am so sorry for anyone just finding out results, are waiting for their TMFR, or are feeling the loss afterwards. My heart goes out to each and every one of you. Please know that you are so loved. To my son Caleb, I love you so much. You will always be in my heart.

I posted a while back about my positive NIPT for T13 and although I didn't get many replies most people were positive that false positives do happen. We have been for several scans with not one soft marker for T13. All the paperwork says " structurally normal male fetus " . We went for amnio 3 days ago and the MFM dr said - i would be very suprised if this is positive. Fast forward 2 days to FISH results which just say ABNORMAL 3 copies detected which is indicative of fetus with Trisomy 13. My heart is shattered. I went to meet with the bereavement midwife today. She has booked us for TFMR (L&D) on Friday next week which will make me 18 weeks. I just cant wrap my head around it - almost everyone says you always see it on a scan . Part of me wants to hold off for full results or go for another scan (which they have said they will do but dont see the benefit ) and that the results are very very unlikely to be wrong. But I have heard very unlikely so many times during this pregnancy its blurring my reality. I dont want to keep carrying my son and feeling him move if he is never going to live its torture. But I dont want to jump into this and the results come back normal I would never forgive myself. I dont think ive read any stories where FISH from an amnio was positive and wrong and im probably just being silly to hope.

My NIPT blood test at 12 weeks has an 83% chance of trisomy 21. It has taken weeks and weeks to get a referral for MFM, and now that I have just gotten referred for an amnio, their earliest appointment isn't until June 10th, I will be 22 weeks, then will be waiting for test results. The thing is, if the tests are positive for trisomy 21, I will want to TFMR, but I am terrified I will be beyond the legal window for the USA. I can fly or drive anywhere in the USA to receive care, but I didn't know if anyone had any advice or information. I would hate to be forced to TFMR just to beat a legal deadline and then the NIPT turned out to be a false positive. Any advice?

We received confirmation that our baby has full t18 today. I knew from the beginning I would want to tfmr, if she was confirmed to have t18. My husband says the choice is mine, BUT has said he would like to continue the pregnancy. I tried explaining that having a miscarriage at 20 plus weeks at home would be more traumatizing then dealing with the situation in a controlled environment. She's already kicking and moving. Going everyday wondering if she's still alive or just waiting for her to pass away on her own is too much for me. I can see it in his eyes and feel that he wants to continue. I know it's my body, my choice, but I also want him on the same page so it doesn't affect our marriage. We have teens, a five year old and a ten month old. I'm just trying to figure out what's best for everyone. How did you guys get on the same page with your spouse? We are just such opposites and it usually works but not in this situation. I'm more realistic. I see the facts, do my research and go off that. He's more idealistic, more hopeful, more positive. I feel like he's holding on to some small grain of hope and it's just unrealistic with our current situation.

Sorry if I rambled, or it doesn't make much sense. My emotions are at an all time high

Those that are years from their TFMR, or consider themselves healed — I know it will always hurt and we’ll always carry this with us, but those that feel healed, that are no longer in pain/suffering and wondering when does it end, those that truly accept what happened, what was it that REALLY helped? Was it an aha moment? Was it a specific therapy? Was it a mantra? Was it just time?

I’m almost a year out. Triggering dates are coming up (NIPT results and the TFMR date) and I’m scared to spiral down into despair. I do feel like I’m healing as I have more good days than bad ones, but life still feels surreal and heavy, cry a couple times a week and feel sad when I think of what could’ve been. No LC or sub pregnancies either.

I have a few things (good things!) coming up that hopefully serve as a distraction this entire month and into June. But I can’t help fearing the trigger dates even though I know it’s in the past and I am safe right now. I keep repeating myself “what happened, happened, and there is no other way it could’ve happened than how it actually did”

I just found out on Monday at my anatomy scan that my baby has severe complex birth defects that will likely be fatal after birth. This was a planned and much wanted pregnancy and my husband and I are distraught. We live in a state that doesn’t allow TFMR so I have to travel as well.

We found out my husband’s brother and his wife are expecting. I’m happy for them, I helped his wife learn how to track her cycles and gave her a ton of information. When telling his brother what was going on, he said, “since I assume there won’t be a shower in July, can wife have the baby shower? Wife isn’t close to her family.” This baby shower was being thrown by my mother with MY family.

The next night, after I had spent the entire day coordinating care out of state, BIL and SIL loop me into a group chat with a photo of their pregnancy app at 4wks pregnant, cracking jokes about how silly the embryo looks at this point. I let them know this was insensitive and only got an apology from BIL.

Needless to say I am heartbroken not only by my loss but by their insensitivity. My procedure is scheduled for next week out of state, but these are people in the family I thought were better than this. I’m so upset that I have to terminate this pregnancy, I wanted this baby so badly.

How have you all dealt with insensitive family members?

Went for a scan at 10+5 and consultant immediately recognized 5mm cystic hygroma and 13mm enlarged bladder. Did CVS testing and awaiting results. She mentioned this is often indicative of trisomy but of course wouldn’t be able to diagnose on scan alone.

I am so devastated. We had transferred a PGT normal embryo so I naively assumed we were in the clear for common chromosomal conditions. This is our third transfer: first failed to implant; second never properly developed past 5 weeks; and now this.

I don’t know where to go from here. I live in Ireland where the cut-off for voluntary tfmr is 12 weeks (with a 3-day waiting period), which means I’d have to make a decision in the next 4 days max. After this cut-off, two doctors would need confirm the mother’s health is at risk or the baby wouldn’t live more than 28 days after birth.

I know I don’t have the mental strength to carry a very much-wanted but unviable baby longer than necessary. I’m scared of the options I’ll have available to me, unsure of when I need to make a call, and terrified of what this could mean for our remaining three embryos.

Also when I asked my IVF clinic doctor what he’d recommend considering two euploid embryos have failed, he suggested to just “try again.”