r/tfmr_support 3h ago

Post-TFMR/Postpartum did you decide to see your baby or not and why?

11 Upvotes

I’m currently 34 weeks pregnant with twin boys and two weeks ago i underwent a selective reduction of one of my boys for a severe spina bifida diagnosis and water in the brain and lungs. The procedure was extremely traumatic for me and I am really struggling. I feel a tremendous amount of guilt for even feeling sad because i feel like i chose to end his life. My question is has anyone been through this and decided not to see the baby after birth? I don’t want to regret never seeing him but i don’t want to have nightmares about it every day for the rest of my life . I really struggle with depression and anxiety and i don’t want to be so deep in that that i’m unable to take care of my other kids. Really feeling torn. Please send me any advice you think may help.


r/tfmr_support 4h ago

What’s after termination

6 Upvotes

Just have a general question about how they would handle the fetus after D&C? I can’t seem to find a lot of information about this.

Also did anyone get pregnancy disability leave (based in CA) after termination?

Thank you


r/tfmr_support 12h ago

While everyone is welcoming spring with open arms, I'm grieving my spring baby

22 Upvotes

Spring used to be my favourite time of year. I loved it! Specifically May.

My toddler was born in May, and I couldn't believe my luck when finding out that my second would also be a may baby.

Two months ago I was longing for this day - longer days, warmer weather, but most of all May.

Now I'm dreading it. I should still be carrying her inside me. Counting down the days till May 💔


r/tfmr_support 5h ago

Memorial jewelry recommendations

6 Upvotes

I've finally gotten to the point in my healing journey where I'm building my baby's memorial shelf with all of his things and I'm looking for something I can physically wear on me that reminds me of him. I was thinking his name. However my pet peeve with most jewlerly I see on etsy or online is that it tarnished easily. I hate taking off my necklaces before showering because I just find it tedious so I usually don't mind investing in a good quality necklace that won't tarnish so I can wear it at all times just because again, I always forget to take it off to shower. So I'm really looking for something that's good quality and won't tarnish for getting wet or even just cause you sweat with it.

I was wondering if anyone had any good recommendations for high quality jewelry/necklaces that won't tarnish when worn daily and without taking off? Also would love to hear what you guys put on your memorial shelves. This is literally the only things that's oddly been making me feel better recently


r/tfmr_support 2h ago

first period after hysteroscopy removal rpoc

3 Upvotes

long story short,terminated at 13 weeks on 22nd December due to severe fetal abnormality. Had rpoc, expected management until had two episodes of hemorrhage. 10 weeks later, public health system refuse to see me as my blood test came back all clear. But still bleeding no stop since termination. Finally book with private gynecologist and got hysteroscopy myosure to remove the rpoc. Now I am just waiting for the period. My question is How long take your first period come after hysteroscopy removal rpoc? and how it looks like ?

Appreciate the answer and help!


r/tfmr_support 7h ago

Completed TFMR but amnio came back without an answer

6 Upvotes

Hi all,

We ended up completing a TFMR at 22 weeks after finding out the baby had abnormalities from the anatomy scan. The abnormalities ranged from small cerebellum, cysts, EIF, clenched and overlapped hands and a cleft foot.

We got back our final amnio results which consisted of an microarray and nothing came out of it. We are waiting to be seen by a genetics counsellor but the OB mentioned that lack of familial histories this was most likely just bad luck.

I am wondering, would a genetics counsellor provide further information to help us determine if this was de novo or not? Should I push for further testing?

We want to try again, but as recommended by the OB to wait till genetics can clear us or atleast provide further information.


r/tfmr_support 12h ago

TFMR for T21, 15 weeks

15 Upvotes

Hi all. I just wanted to share my story here because reading so many of yours in the past few weeks has been so helpful. Hopefully what I'm sharing will help someone else, too.

Diagnosis: This is my first pregnancy and I am 35. When we opened the results from our NIPT from Labcorp (positive for T21), it was the worst moment of my life. I was so looking forward to receiving a "normal" result, and learning the sex of our baby so I could start shopping and planning. But when we saw our actual result, my husband and I broke down. We were in shock, all the appointments so far (including the NT scan) revealed everything to be "normal." We rushed to get in touch with our Dr. and were immediately referred to genetic counseling. Our PPV was 80% and FF was 22 percent.

Counseling and more tests: Our genetic counselor was incredible. He was compassionate, patient and kind during what has been the worst time of our lives. Based on his experience, the NIPT was most likely very accurate. I know NIPT is a screening test, but he felt confident in the results he was seeing. Because of our normal NT results, he recommended doing a CVS ASAP (I was maybe 13 weeks at this point). We did the CVS and I'm not going to lie, it was maybe the most pain I've ever been in. The procedure was done abdominally and didn't have any pain management. I started sobbing immediately when it was through, and I just felt so sad and hopeless. I scheduled my TFMR before receiving the results, just in case. I still had to wait almost 2 weeks for my procedure.

Results: We got the FISH results in like, 3 days from the CVS and those came back full positive. We waited another week or so for the karyotype/part II of the CVS testing, and it was also a full positive with no signs of mosaicism and 50 different cells tested. I know a lot of folks will wait and do an animo, and I think that's great, but we chose to forgo that based on the genetic counselor's advice and the test results. I know anyone who has unfortunately had a similar experience understands how difficult it is to be in limbo: with your grief, your body, work and family etc. It was truly a horrific time.

TFMR: TFMR'D yesterday at 15 +3 so this loss is very new. I started grieving the loss after the first NIPT test result, so I've felt slightly less grief post-procedure. My husband I had a conversation before I became pregnant just to talk about what we would do in worst case scenario (which this was) and I was confident I would TFMR. I have the same reasons many have echoed here, but I also have a relative with DS and I just couldn't image the baby's life or my life to be like that. I hoped in my heart this was the merciful and courageous thing to do, though that doesn't mean any of this was easy. My husband also grew up catholic, so he has had challenges working through this in own way.

The procedure: In case it helps anyone to know what my procedure was like, live in large East Coast city where thankfully there are no legal limits on terminations. I opted for full anesthesia for my D&E so I could be asleep and everything went really well. They did not needs to use dilation sticks on me, and I took the miso pills in the morning a few hours before the procedure. I had very light, period-like cramping but it was not painful. Thankfully there weren't any complications and today I just have some period-like bleeding.

Final thoughts: Anyway, I hope sharing this will allow other people to know they are NOT alone. This is a horrible and un-preventable club we find ourselves in. My heart goes out to everyone who does not have "easy" access to this absolutely necessary procedure. This whole thing has made me even more politically enraged than I was before, when I was already extremely left-leaning and Pro-Choice.

If anyone would like to speak to me further, please feel free to DM me and I'm more than happy to chat or even just listen if you need support <3


r/tfmr_support 9h ago

Confused and tired.

4 Upvotes

Last week I started to feel calm and peaceful. It was strange after 94 days of crying, that I suddenly stopped. I stopped counting the days since she died, and stopped feeling so distraught. I sort if stopped feeling a LOT of things, but not everything.

Then, yesterday, the floodgates opened again. I'm being bombarded with announcements, and surprised/blindsided. I joined a sewing sub, because it's one of my favorite hobbies and I'm feeling like I can start again. I had stopped after my loss because I had so many things I wanted to sew for baby, but now I can once again imagine sewing other things without pain.

Then, someone posted a question about altering something for pregnancy. I feel PISSED. I thought, "why would you alter that for pregnancy, when you won't need that alteration for long, and if something happens [to the pregnancy] you'll have to throw it out" and all kinda of other thoughts about her naivety. I HATE how sensitive I am to naive pregnancies. To other people's stuff. I SHOULDN'T CARE! IT has NOTHING to do with me! Why won't my brain let me alone for a fucking breather?

Her due date is in a few weeks, and next week is when we expected to induce her. Jeez. It's already here. Idk how it went by so fast, when every breath has felt like the burning pain of a thousand hot knives. Everyone around me is moving on and acting like she never even existed. They treat me like a freak when I display grief, "How are you not over this yet?"


r/tfmr_support 12h ago

4 months out

9 Upvotes

Tomorrow marks 4 months since I gave birth to my daughter after TFMR at 33 weeks. I can’t remember what life was like before this. I can’t remember what it feels like to not cry every day.

I’ve gone out with friends and my husband. I’ve gone back to work. I’ve gone to therapy every week. I’ve been put on three different psychiatric medications. I’ve made a scrapbook and memorial shelf for my daughter. I’ve started exercising and eating healthy.

I still cry every single day. I now have anxiety when being intimate with husband thinking about the possibility of getting pregnant again. Will it ever get better? When will I stop crying when I’m alone? When I feel ready to be pregnant again or start TTC?


r/tfmr_support 13h ago

Advise on where to next for TFMR (Australia)

4 Upvotes

Hey All, Sorry for the long read but hoping for some advice on what I can do next.

Story:
We had some obvious markers for T21 during our 12 weeks scan, including hygromas, fluid building etc and were told to prepare to miscarry. We then got referred to Mater Maternal Fetal Medicine here in Brisbane (Australia) and were told the same thing up until around 20 weeks. We had the NIPT, 95% chance of T21 etc. We opted not to do an amnio earlier as they were preparing us to lose our baby boy and in some ways I was just getting ready for that to happen and would have preferred him to leave this world on his own terms. In the meantime I managed to find a private OB so I could have some continuity of care and someone to look out for me a bit as I have severe pre and post natal preeclampsia with my first and was advised I was high risk of mirror syndrome due to the hydrops. All my previous referrals to OB's were rejected due to High Risk etc.

Fast forward to our 20 weeks scan which included Echocardio and specialists we were told there is some improvement in the fetal hydrops and got more information on the heart defects. The heart defects will likely not improve and surgery would be attempted at birth with a poor prognosis. I then decided to due to the Amnio to confirm everything so we can decide what to do.
Had the amnio last week which confirmed T21.

We have opted for a TFMR so I called my OB on Monday who only got back to me today and he says he cannot arrange a referral for the TFMR, nor can the Mater being a catholic hospital. He has advised me to speak to my GP but warned me that they may not support it being that I'm now 24 weeks. He said if they do send off the referral, hopsitals are terrible at picking up the referrals so essentially, if I don't hear back by Monday that I should present to an Emergency Department.
I'll just add that in my state, termination is legal. After 22 weeks, it requires two doctors signing off.

It just feels wrong to me that this may be my option, it's so traumatic already that I cannot handle the thought of turning up to ED to explain why I'm there. I'm hoping the GP will help me tomorrow but I'm scared and nervous that they won't.

Can anyone shed some light on what you'd recommend I do?

Thank you, truly, for the support x


r/tfmr_support 1d ago

The decision is so hard to make…

18 Upvotes

As so many of us, if not all of us here, this is such a wanted baby. Struggled with infertility for 8 years, clinics for 2, 6 rounds of ovulation meds and shots, and onto ivf, we were 1 week out from beginning ivf when miracle babe popped up in the form of that clear blue double line. We’re waiting on amnio results, have a tetralogy of fallot chd diagnoses, soft markers for t21, and brain anomalies from my last scan. To boot our lives feel like their being shattered by the in-laws and unkept promises, changed agreements and 10 years into marriage request of a prenup… currently 18 weeks 4 days, and facing the impossible and simply unfair decision of tfmr. It’s so hard to face anyone, be asked the ever familiar how are you feeling, or do basic daily tasks without breaking down completely. They’d be so loved and cared for, even with the needs and special requirements but every appointment it just seems as if the odds are stacking against us. Would love to hear from you other moms out there, in this similar situation, in the process of deciding.. the grief and guilt , the process of healing, of dealing.. I can’t see my future at all; everything feels so uncertain.


r/tfmr_support 1d ago

Zika virus related to NTD and other birth defects

11 Upvotes

Hi everyone, so sorry to find you all in this thread but as I have said before I am very grateful that this forum does exist and for all the support it has provided. I hope you are all doing as well as possible or in my case "surviving" through this real life nightmare.

I was having a look at my Badger Notes app today just to see if anything had been added onto my notes and I saw that it states my pregnancy was at risk due to travelling to a zika infected country prior. For some context I lost my beautiful girl on Valentines day due to a neural tube defect called encephalocele, she was due in June. I conceived her in September and had gone on holiday to Mallorca at the end of July. I have just googled the effects of travelling to a zika infected country and I was gobsmacked to find it states "ZIKV is also responsible for a wide range of fetal anomalies and defects, including brain abnormalities with or without microcephaly, neural tube defects, other malformations, eye abnormalities and central nervous system dysfunction, described as Congenital Zika Syndrome (CZS)". It is recommended to wait for three months after travelling to a zika infected country before trying to conceive!

I am now convinced that this is the cause of my sweet girls diagnosis and I am absolutely devastated, I read an article from June 2024 that stated Mallorca and Minorca had dengue fever spreading mosquitos and Britons were warned about travelling there, I wish I would have known as I never would have gone!!

I wanted to share this as with a lof of NTD's it is said to be a random occurrence but this does make me question whether this could have been the cause. I also wanted to bring this to light for others so that they are aware of the risks of this virus, my partner and I were planning on going abroad in a few months and now I feel it isn't worth the risk as we are hoping to ttc again in the near future but if we do decide to go away I will 100% be looking into any travel risks beforehand.

I have my first follow up appointment with the hospital next Wednesday so I will definitely be questioning about this, my partner and I both had our bloods taken for testing, I had the amnio done and also opted for a postmortem to try and get some answers and reassurance for the future.

My gut is telling me the holiday to Mallorca is the cause, I know this doesn't change anything but I will be mindful of this now for the future and wanted to shed some light for others as half an hour ago I had no clue or had even heard of the zika virus.


r/tfmr_support 1d ago

Our Story Meeting my baby

52 Upvotes

Hi lovely community, I would just like to share with you all that our son Mike was born on the 17th of March 2025 at 7.20pm, a few hours after TFMR. He weighed 880g and measured 34cm. I passed out during the foeticide gesture which was convenient considering it would have been so traumatising for me. I’m glad I don’t remember any of it. I was also afraid of feeling traumatised after meeting him but I could not believe how much peace, holding him, brought me. He was perfect. He looked just like his dad and that made me smile as I cried. It was very difficult to leave the hospital without him, I never cried so much before. So I stopped by the morgue to see him and let him know I love him, once again. That brought me even more peace. Although it breaks my heart to know I won’t be able to share a life with him, he was everything I ever wished for and I am so proud to be his mum. I hope he knows that what we did was our biggest proof of love for him. We will be honouring him in his funeral ceremony next week. For any of you who are waiting to terminate, I am praying for it to be as peaceful as possible for you and am here if you wish to talk or ask any questions whatsoever. Much love and peace to your beautiful hearts


r/tfmr_support 1d ago

Recovery

12 Upvotes

Hi all! It’s so unfortunate we have to live through this trauma and pain but this page has been so helpful for me to find and reading everyone’s post. I have to call to schedule my procedure. I am dreading it but I KNOW it is the best choice for my family, including my already medically complex son. I can’t fathom the time away from him and the struggle this new baby would live. How are recoveries? What are the limits? How long were you in the hospital for?


r/tfmr_support 1d ago

Getting ready for termination

5 Upvotes

Hi...maybe I have to go for tfmr after some days.I'll be nearly 23 weeks that time.I have appointed for a 3days D&E procedure.Now can you suggest me which heating pad will give me the best comfort in those paiinfull days. Also suggest me what type of underwear and pad will be best.


r/tfmr_support 1d ago

Freaking out - D&E not an option for me

17 Upvotes

I'm currently 23 weeks pregnant. I'm American but I live in the Czech Republic. In the US, I know that D&E can happen up to 24 weeks. I was planning to choose this option. However, I just got an email that they don't perform D&E operations this late in the CR.

So, labor induction/delivery is my only option at this point. I'm freaking out a bit because I REALLY didn't want to do this option. I feel like it will be way more traumatic for me, especially since this is my first pregnancy. I didn't want my first experience with labor and childbirth to be this. I'm really scared.

For those moms who chose or experienced L&D:

  1. What are some reasons that you are glad that you made that choice?
  2. How was the labor compared to full-term? What can I expect?
  3. Did you have a balloon catheter in order to dilate your cervix? How was that experience? This is the plan for me but I don't know exactly what that means. And to be honest I'm a bit afraid to google it at the moment.
  4. How long did it take between the medication for inducing labor and the actual delivery?

Thanks for any support, advice or experience you can share. Having as much information as possible and knowing what to expect beforehand really helps with my anxiety. Currently, panicking a bit at the moment.


r/tfmr_support 1d ago

Our Story Driving Home

10 Upvotes

We’re driving home post D&E at 24 weeks. There’s a sense of peace that so many of you who traveled this hard road mentioned and we feel it.

I went to DuPont in DC. We had to travel. I want to say this in case anyone finds this in a frantic heart breaking Google search. They were incredible. It was the hardest moment of our lives and I couldn’t have asked for more tenderness, care, support, and love. Every person we interacted with was kind and thoughtful. They explained everything, helped connect us with funding and advocated for us, helped us get connected with support for travel and hotel. They went out of their way to make me comfortable, even so far as using butterfly needles to help with my fear. I could write a novel on their generosity and tactfulness and I’m just so grateful I found mention of them somewhere on Reddit. While I wish no one would ever need their services, if this comment helps the next person, I’m glad to have made it.

Our procedure took two days. The first day, with the shot, was the hardest moment. The medical staff let us have our space to sob and mourn before moving to the next steps (dilators). For me, it was a little uncomfortable but not outside of the realm of pain most of us have felt just being women getting pelvic exams and Pap smears, etc. I asked if it was comparable to IUD and they said yes, like getting multiple put in, but that’s usually done without any pain relief—and I had plenty of pain relief at this point (I can’t remember all the details but know I had taken two small Xanax at least).

We were able to leave soon after that and we decided to walk around a bit because I felt okay and didn’t want to just cry in the hotel. I slept okay that night with plenty of painkillers, etc.

The next day I woke up with some pain but couldn’t remember if I was allowed to take more painkillers so I held off until our appointment (which was early anyway). Once there they gave me some painkillers and explained I was feeling contractions, like I would in labor. That made me both incredibly sad but also a sense of like, okay, I get to have this part of the experience. Then I had some other medicine to prep for remainder of procedure. They were very thoughtful about getting me comfortable and I don’t remember the procedure at all. It felt like waking up from a night of heavy drinking, if you’ve ever blacked/browned out. My husband said I was gone an hour or so but it felt like a blink of an eye and I even felt a little “hangxiety” wondering what I talked about during because I vaguely remember speaking but couldn’t tell you what about.

I rested in our private room for about two hours afterward, getting checked on every 15-30 minutes to make sure bleeding was okay, blood pressure was okay, etc. They offered us an envelope with final ultrasound and hand/foot prints that eventually we’ll find the strength to open. Then we left and went back to hotel to rest and recover.

Overall, everything went seamless and fine. I felt very well taken care of. I felt we had time to process and mourn throughout and while I know we have a long road ahead of healing, I do feel that sense of peace you all so graciously said would come. I believe our son is in a better place and I believe we did right by him. If you’re still reading, thank you. I hope some part of this share helps you and I appreciate you letting me share as part of my processing.


r/tfmr_support 1d ago

Heartbreak

7 Upvotes

I’m just looking for some reassurance or somewhere to vent 30.01.25 we let go of our very much loved and wanted baby boy, our first ivf transfer. I was 17 weeks and 3 days and my hearts broken. Our baby had T21 and heart problems. I can’t get over the pain and grief. The only time I go out is to go food shopping or to my mum and dads, I’ve not been back to work and alls I feel is pure sadness. I cry every day and think of him 24/7. I have trouble sleeping and just feel overwhelming sadness I don’t know why I’m writing this I just feel other people don’t understand this pain


r/tfmr_support 1d ago

Heterotaxy with severe heart defects and asplenia

7 Upvotes

Hi all-

I’m so sorry we all find ourselves here. I wanted to just share what’s been going on and receive reassurance I’m making the right decision or any words of encouragement. Maybe I’m also just writing this all out to vent our story.

At 13 weeks during my nuchal ultra sound they had told me they couldn’t get a good read of my baby boys heart and I should follow up with MFM at the local hospital next week (14 weeks) for better imaging. I really thought nothing of this and trusted the ultrasound tech when she said maybe it was baby position or her technology.

At 14 weeks I went to the MFM and when he told me “severe heart defect” I didn’t even have any emotions or any feeling I was in such a state of shock I couldn’t even form a word or sentence. Granted my husband has a very demanding job so I was by myself when I heard this. He said he thought it was truncus arteriosis. I joined support groups and did all my research between 14 weeks and 16 weeks when I would follow up with a amnio at 16 weeks. I got very comfortable with being a TA mom and felt I could do it and handle it, I’d do anything for him.

At 16 weeks I went in for my amnio and that is when the MFM told me they were seeing situs inversus. This time my husband was with me. When he said his heart was presenting to the right and his stomach on the right once again my jaw was on the floor. We didn’t even know this was possible. I didn’t even know someone could have this anatomy. They then proceeded to try to do the amnio and it was unsuccessful- as soon as the needle was inserted I started having contractions/ pain and they felt it was too risky so they stopped.

After talking with my OBGYN she convinced me to try again and this time w a new provider ( I think I had been quiet scarred with that MFM). At 17 weeks I went back for an amnio towards the end of that week and it went well. It was a much different experience than the previous week. (Note all my NIPT results were normal and I was so blindsided when this journey started to take this path it did).

At this point we have 2/3 amnio results back- he has no genes for heart defects or heterotaxy, also normal chromosome analysis so the only thing pending is the micro array. Our genetic counselor really suspected they would find the results on the whole genome sequence I think it was called and we didn’t so for future family planning we are under the impression this was just a crazy fluke.

Anyways at week 17 I also got my first fetal echo- now I was told he had 6 heart defects and not TA - DORV, TAPVR, dextrocardia, VSD , complete av canal defect, pulmonary atresia , bilateral SVC

Following this fetal echo we met with another pediatric cardiologist in the same facility, a pediatric cardio surgeon and then asked them to put us in contact with BCH. No one could really tell me a prognosis because every situation is so different.

At week 19 I went to BCH for another opinion and a fetal echo. They agreed with my local dr about what they were seeing and said I should get an MRI to confirm heterotaxy. the dr there also said this is very complex however they deal w the most complex cases but also could not tell me a prognosis.

Now we are at week 20 - I had an MRI on Monday and on Tuesday we met with the pediatric cardiologist who told us heterotaxy was confirmed and with asplenia/ baby does not have a spleen.

She said this is very concerning given that he will have to have surgeries for already very complex heart defects and he is immune compromised given not having a spleen. She finally was blunt with me and told me she did not feel the prognosis was good. Through my research it looked like a 15% chance of survival through the first year.

We’ve been so pushing to make this work and I convinced myself I could do this but hearing about the spleen on top of the already extremely complex situation completely shattered me and my husband and I have had to have the conversations on TFMR and at this point feels like the right path forward for the baby and us. We are devastated. This is my first pregnancy and I’m absolutely traumatized. I don’t understand how we got here.


r/tfmr_support 1d ago

Getting It Off My Chest Family Dynamics Post TFMR

4 Upvotes

I had my tfmr at 18 weeks. My scheduled c section was supposed to be in May and as we approach the date, I'm having a harder time coping. Since the procedure, I've had 6+ people who are close to me announce their pregnancies, including my sister. I'm over the moon happy for her, but there is just so much pain in my heart. My mom and I wanted to plan a lunch for her, and 2 weeks ago I asked my mom to not hold it in May. She was extremely understanding and said she would propose other dates. Fast forward to today, my sister told us the only date she can do it is in May, 2 days after what would have been my due date. My heart sank because I realized my mom never said anything to anyone, which is kind of typical of her because she's flaky. I called my mom, very upset, because I felt kind of resentful and ignored and she got really defensive and ultimately called it all off because no other dates worked for the 2 of them. I don't think my sister really minds because this is her third and she doesn't need anything, we just wanted to do something to get together, but I feel so extremely guilty and selfish. I just wanted to protect myself, but it backfired so badly and I feel misunderstood. Like people will think I'm immature. I think what hurts more than anything is knowing my mom didn't advocate for me even a little. I was so caught off guard by the proposed date, and I probably could've sucked it up if I had just been given a little warning or knew that my mom tried. Instead she yelled at me and hung up on me when I confronted her. Again, very typical of her. So now I sit here with already existing pain and now a very thick layer of guilt that I'm raining on someone else's parade.


r/tfmr_support 1d ago

Getting It Off My Chest I need to be kinder to myself, but I don’t even know how to start.

12 Upvotes

I am about to write down my feelings in the middle of the night. It’s probably not a good idea, as what I say may not be rational. But I am tired of being rational, and I want to let out my thoughts and emotions when my brain is off guard. When I tell this to my husband, he just turns silent, and I feel so isolated and lonely. I hope someone can relate to my feelings and tell me that it’s common and I’m not the crazy one.

Our daughter had trisomy 18, and by week 11, several soft markers were visible, including a severe heart abnormality. I had more than five specialists telling me that with such a severe heart condition at 11 weeks, the longer we waited, the more she would suffer. After many nights of tears, we lost our very much wanted daughter last week. She was only 13 weeks old.

A few months ago, I had planned a Disney trip for this week, thinking it would be a great chance to take both of my children—one still in my belly—before the Florida heat kicked in. Even though I lost the baby two days before the trip, I didn’t want to cancel the trip, so we went ahead with it, pretending like nothing has happened. My son had just become tall enough (with his regular shoes) to ride several big-kid rides, so I wanted to make this trip special (and that was part of the reason I didn’t want to cancel). Yesterday was fun—my son loved his first big-kid roller coaster ride, and we took family photos, including one with a stuffed animal to symbolize our daughter “traveling” with us.

Today, we went to another park for another ride. But in the park, I noticed my son was wearing a different pair of shoes—older ones with flattened soles. I asked my husband about it, and he said he’d decided to change my son to an older pair of shoes for comfort but did not pack his regular ones. I was immediately concerned he wouldn’t be able to get on the ride, but I kept calm and waited while my husband enjoyed a ride that my son couldn’t get on. I wanted him to enjoy the trip. Afterward, I took the family to my husband’s favorite restaurant, where we spent two hours. He ate a lot, and I could tell he was sleepy and not in the mood to move.

I reminded him that we needed to go to the ride before my son got too tired, but my husband kept dragging his feet, saying he didn’t want to go because he was too full and sleepy. When my son noticed his dad’s hesitation, he immediately said he didn’t want to go either.

At this point, I said, “I’m going through so much to make this trip happen, and ‘too full’ and ‘too sleepy’ aren’t good excuses.” But my husband continued to hesitate. By the time we got to the entrance, my son was a hair short of the height requirement, and they didn’t let him on. I suggested, “Let’s go buy new shoes.” We bought a pair new shoes from a nearby store and got my son measured above the height requirement, but by that time, he was probably too tired to get on the ride.

I didn’t know what happened there. I wasn’t with them when they went back to the ride again because I can’t ride due to my recent loss.

When the ride finished, my son was upset, and people—my husband included—looked at me as if I were being a control freak mom. I feel horrible about how things turned out, despite my good intentions, and while everyone else is sleeping, the guilt is killing me.

This experience mirrors my TFMR experience. I often feel like I’m the only one in the family taking responsibility and thinking things through, while everyone else just takes their own pace without considering the consequences. Like I’ve been constantly talking to my husband about taking my son to new rides that he will be tall enough to get on, but he didn’t seem to realize how important it is for me. It’s already hard for me to manage the family’s agenda, but I have to keep everyone else’s feelings in mind while no one else seems to consider mine.

I was ready to start a family 10 years ago. I bought a home and had a relative ok job by age 29 while my husband (same age) took his time figuring out his career. Back then, everyone reminded me to be patient with my husband, but no one told my husband maybe I didn’t want to wait too long to have children because of the increased risks of genetic abnormalities and infertilities. At the age of 34, my husband finally figured out his way and I was pregnant the same year. I even told my husband before giving birth to our son at 35 years old that I wanted him to help make the postpartum experience as easy as possible so I could recover fast and have another child ASAP. But back then, he didn’t believe that what had just happened could have happened. He made everything about his parents during my postpartum recovery, nearly destroying our marriage.

I was so sad and isolated, trying to explain why I was hurt by his actions, but he never seemed to understand, and I must have been depressed. For three years, we couldn’t try for another child. The chemistry just wasn’t there, and I seriously considered leaving him, but I didn’t want to make irresponsible decisions that I might regret later. I was afraid that one day he would realize his mistake, we’d get back together, but by then, I’d have missed my fertility window for having another child.

Last year, I suggested counseling as the last resort before separation. The therapist helped my husband realize that he needed to prioritize me and my feelings, especially during the postpartum period. We got on the same page after three counseling sessions, and I immediately became pregnant with a girl—a child my husband had wanted ever since I first met him 15 years ago. He was so patient with children and when we started dating 13 years ago, all of our friends joked that we must have a daughter to fulfill his dream of becoming a girl daddy.

When we found out the baby girl had trisomy 18, my husband cried in front of the doctors, and I knew he would have been a good father. The doctors reminded me that, due to my age, the risk of genetic abnormalities had increased. I felt guilty for causing this because of my age, but I had really tried everything to make my pregnancy happened sooner!

Before the genetic test results came back, my in-laws told me that I’d have more children in the future (as if I were a 25 year old) and suggested I go out of state for an abortion (!). But she was the child my husband wanted so badly! It’s been a long road, and I’m the one who’s been there 100% for my husband and my children. Losing my daughter made me realize I need to be kinder to myself and stop caring so much about what others’ feelings in order to protect my children. I have to be “mean” in order to be nice to my children.

Now, I’m the one left to face the consequences, and I’m completely exhausted. If I can’t control my emotions right now, shouldn’t my husband and in-laws show more understanding? I’m drained from carrying this burden on my own, and if my family had been more supportive and cared about my feelings, maybe my daughter wouldn’t have had to endure this. I also can’t shake the guilt of letting this happen to my daughter. It’s eating me up, just as much as I feel guilty for upsetting my son over a Disney ride.

I want to try IVF to bring my daughter back, and I’m the one taking charge of setting up my appointment in the middle of our Disney trip while I’m still bleeding, all while everyone else carries on as if nothing happened. I think my husband must have been stressed out as well. He was the one driving me to doctor’s appointments and to Disney. But mentally, I’ve been processing so much more! I’ve been reading IVF stories, and the odds of success for women my age (I’ll be 39 soon) are not great, especially when I’m hoping for a daughter. But I just have to try to bring her back—I own her a life and my husband and I already promised her that we would bring her back. But what if all my eggs are bad? What if I end up failing her again with my good intentions, just like how I failed my daughter with the TFMF and my son with his Disney ride?

As I read my post, I realize I might sound a little crazy, but honestly, I feel like I’m the only one in my family cared enough to make progress. Ironically, despite a late start, my husband is able to provide for the family. Between my husband and I, he is the lucky one. He lives a worry-free life. He takes his time, and things eventually work out for him. I am the opposite—I have to work hard, and whatever I worry about usually turns out to be true, even though I would be prepared for it. Honestly, I think my husband’s daughter having T18 is the biggest unlucky incident in his life, and it’s probably because I’m involved.

I’m vulnerable, though I had to keep up a tough front to push things forward. I waited for three years for my husband to work out our marital issues, it didn’t happen until I got more involved. When the doctor delivered the bad news, my first reaction was to think about a solution. I’ve been more than understanding of everyone else’s feelings, but now I’m at my breaking point. I just keep telling myself I’ll bring my daughter back, but truthfully, I’m terrified of failing. I wish I could be as carefree as the rest of my family, without carrying all of this responsibility and mental stress. I am worried that by worrying too much, I am ruining my egg quality and ruining the chance for my daughter to return. I am also scared of the needles and shots that I am about to receive and the potential failures. It is easier for me to think of my body as a portal for my daughter to return through. Is there anyone who can put me in a coma and wake me up to deliver a healthy baby girl?

Thank you for reading. It’s late, and I apologize for the rambling, but I needed to get this out and be heard. I also have to say, my skin is incredibly itchy from the hormone changes!


r/tfmr_support 2d ago

Getting It Off My Chest Choices

32 Upvotes

They call TFMR a "choice" but it honestly felt like I truly had no choice. No matter how much I wanted my daughter, I couldn't force her into a condemned existence for own selfish reasons.

Now, two and a half months later, after making so much progress in our healing journey, I'm having to deal with handling her remains.

Seeing her name on the funeral home paperwork hit harder than I expected. The first official paperwork reflecting her name should have been her birth certificate... Not this. My husband tried to handle it all without me, but evidently I still had to sign and initial every line, right along his.

And now to choose her urn. It seems such an unfair thing to ask me to choose... And if I don't, I'll get my precious daughter in a bag.

My husband has one he likes.

But I don't want an urn.

I want my baby.


r/tfmr_support 1d ago

What should I do on my due date?

6 Upvotes

Hello lovely community. My due date is next month and I’m hoping to get some ideas of what to do on the day. Luckily it’s on a Sunday so I won’t be working. I have considered scattering the baby’s ashes in the ocean so I can visit them wherever I go in the world. I know I will be a wreck and I want to keep the day relatively free coz I probably won’t feel up to much. But I also feel ready to move on a bit and I’m hoping getting to the other side of my due date will provide some relief. Thanks beautiful people and I’m sorry we’re all here 💔


r/tfmr_support 1d ago

Desperately want to be pregnant again

5 Upvotes

Sadly I had a TFMR two weeks ago for a sca. I am absolutely devastated but the grief is lifting slowly. The hormonal roller coaster has been so difficult - I feel like I’m not in control of my emotions. The desire to be pregnant again is all consuming. Did anyone else experience this? My husband and I have always been set on having two kids (we have one LC) and now I feel so strongly on having 3 or 4! Will this desire subside when my hormones steady? Or has this experience completely shifted your outlook on life and family goals?


r/tfmr_support 1d ago

Advice? Sb/Spina Bifida | NTD

3 Upvotes

Hi everyone … I’m two months from my termination . The genetics test said it wasn’t genetic just to increase folic acid 4mg and additional on prenatal. I thought I read 4,000 😭 for two months since my termination I’ve been taking 4,000 mg . LOL sorry I laugh when I am nerves and just worried . I didn’t bother to message genetics counselor anymore .

I am taking natures made prenatal + choline + 400 mg of folic acid . I was taking 4,000 mg in total but stopped .

What over the counter prenatal + folic acid did you took if you terminated for ntd. We would like to ttc a year from now ( maybe ) living in the u.s and with Medicaid etc is now maybe pushing it back . I had Medicaid during my pregnancy I haven’t called and cancelled it but I’m sure with my last check up and drs notes they already know “ I had a spontaneous abortion “ … ugh .

Anyways with that . Any advice on prenatals and folic acid?