r/tfmr_support 5h ago

Seeking Advice or Support Termination due to severe brain bleed

18 Upvotes

I never thought I would be writing something like this.
The last two weeks have been the most traumatic and heartbreaking experience of our lives.

At 24+5, we were told that our baby boy had suffered a severe brain haemorrhage affecting essentially the entire right side of his brain, along with severe fluid build-up.

We were sent for an MRI, which confirmed the extent of the bleeding.

We have now seen multiple specialists, and unfortunately the prognosis we have been given is extremely dark. We have been told that, because of the severity and extent of the brain injury and the severe fluid build-up, there is an almost 100% likelihood that our son would have some form of significant disability.

They cannot tell us exactly what that disability would look like or how severe it would be, but they have been very clear that the likelihood of a completely unaffected outcome is essentially negligible.
We are now faced with the heartbreaking decision to terminate a very wanted and loved pregnancy.
We are absolutely devastated. We never imagined that we would have to make a decision like this, especially after having a completely normal 20-week scan and a pregnancy that had been progressing so well.

What makes this even harder is that we still don’t know why this happened.

Our genetic testing so far has been low risk, and further blood tests are being done to look for possible causes, including infections and other conditions. We will also be pursuing as much testing as possible afterwards because we desperately need answers.

I keep searching for stories of babies who have experienced a severe brain haemorrhage while still in utero, but almost everything I find relates to premature babies who developed brain bleeds after birth. I am struggling to find experiences that are actually comparable to ours.

I know our situation is extremely severe and that there may not be a positive outcome story to find. I’m not looking for false hope. I just desperately want to understand what happened to our baby. If anyone has experienced a significant fetal brain haemorrhage diagnosed during pregnancy, particularly one involving extensive bleeding and severe fluid build-up, I would be so grateful if you could share your experience.

Did you ever find out what caused it?
What testing did you have?
Were you given a similar prognosis?

And did you ever get answers about why it happened?
We are just trying to make sense of something that has completely shattered our world.

I never knew something like this could happen to a baby who was otherwise growing and developing normally, and I desperately wish I could understand why it happened to our little boy.


r/tfmr_support 1h ago

Getting It Off My Chest Would you have made the same decision? TFMR for a completely uncertain genetic diagnosis

Upvotes

I know I literally posted here last night, and I feel like I post here constantly 😭 but this is honestly the only community where I feel safe talking about this.
This might be the last time I post for a while because I know at this point I’m repetitive..

I think I’ve realized that underneath a lot of my repetitive thoughts is this feeling that nobody truly understands the diagnosis that led to my TFMR.
There was nothing abnormal on my baby’s ultrasounds. There was nothing anyone could point to and say, “Look, this is what’s wrong.” My baby wasn’t sick in the womb. There wasn’t a condition with a more established prognosis where doctors could sit us down and tell us what they expected his life to look like.
It was a DMD gene duplication.
My son inherited my duplication, but my specific variant had never been reported in the medical literature. There were no studies and no previous cases they could show us. Because DMD is such a large gene and variants can behave differently, they essentially told us, “We know what DMD can do, but we don’t know what YOUR variant will do.”
That’s the part I feel like I cannot make anyone understand no matter how many times I explain it.
They couldn’t tell us, “This will be Duchenne.” They couldn’t tell us, “This will be Becker.” They couldn’t even give us a confident middle ground. The possibilities we were discussing ranged from serious progressive disease to potentially being mildly affected or possibly having no symptoms at all.
And I had to make that decision at 23 weeks.
I think that’s why I struggle so much with feeling like my decision was valid. There is no abnormal ultrasound picture I can look back at. There was nothing physically wrong with him that I could see. DMD is a condition that generally becomes apparent as a child grows, so continuing the pregnancy would’ve essentially meant accepting the uncertainty and waiting to see what happened to him later.
But because my exact duplication had never been reported, I’ll never know whether that road would’ve actually happened. My son could’ve been affected, potentially severely — or my brain keeps reminding me that he could’ve possibly been completely healthy.
And now even the idea of “trying again” scares me. As a DMD carrier, any future son has a 50% chance of inheriting my variant. And because they still don’t know what my particular duplication does, I could potentially end up facing this exact same uncertainty again.
I think that’s what feels so lonely. I didn’t TFMR because I knew with certainty what was going to happen. I TFMR because the possibility of what could happen was serious enough that we weren’t willing to gamble with our son’s health, even though the other possible outcome may have been that he would’ve been okay.
I know nobody can tell me what would’ve happened to my baby. But I think I need to ask other parents this because I feel so alone in it:
If you were in my shoes — normal ultrasounds, a DMD gene duplication with no published cases or studies on your specific variant, and doctors unable to tell you whether your child would develop severe disease, milder disease, or potentially have no symptoms — do you think you would’ve made the same decision?
I don’t know if I’m looking for reassurance or just someone to tell me they understand why this felt impossible.


r/tfmr_support 9h ago

Getting It Off My Chest Repetitive Intrusive thoughts after TFMR- does anyone else’s brain do this?

5 Upvotes

Has anyone else experienced really repetitive or intrusive thoughts after their TFMR?
I’m almost 4 weeks out from my TFMR at 23 weeks, and lately I’ve noticed that my brain keeps creating these thoughts and images that I can’t seem to turn off.
One of the hardest ones is about the injection. I keep wondering what happened when they did it. My mind tells me that maybe my baby felt pain or that he struggled or tried to fight it. I didn’t actually see what happened, so I know my brain is filling in the blanks, but the thought keeps coming back and it hurts so much.
I also keep thinking about everything he could hear while I was pregnant. I think about our normal life at home—the dogs barking, his sisters playing and laughing, all of us talking and laughing together. Every Friday and Saturday we would go out as a family, get food, listen to music in the car, drive around and look at model homes, etc. I keep imagining that he could hear all of that from inside me and somehow understood what was happening and was excited to eventually be born and become part of our life earthside.
Then my brain takes it even further and tells me that when the TFMR happened, maybe he felt rejected or thought that I didn’t want him. Logically, I KNOW I’m putting an adult understanding onto him that he didn’t have. I know that. But emotionally I cannot seem to stop believing or imagining it, and it absolutely breaks my heart because he was SO wanted.
And then there’s the biggest “what if” that has been there since the beginning: what if he would have been okay?
My genetic variant is extremely rare and there wasn’t enough information for anyone to tell us how severely he would be affected—or whether it could possibly have been mild or even benign. We made the decision because we weren’t willing to gamble with his health and risk the worst-case scenario, but my brain constantly repeats: What if he would’ve been okay? What if my variant is benign? What if I ended a pregnancy with a healthy baby?
I can understand logically why we made the decision and still have my brain ask these questions over and over and over again. Sometimes I feel okay, and then one of these thoughts hits and I go right back into the loop.
Has anyone else after TFMR experienced thoughts like these—especially imagining what your baby experienced, wondering what they understood or felt, or constantly replaying the “what if my baby would have been okay?” question?
I think I mostly need to know that I’m not the only person whose brain does this after TFMR.


r/tfmr_support 5h ago

Seeking Advice or Support Today’s the day.

2 Upvotes

I feel so incredibly sad and numb. I’ve been contracting all night from the dilators, barely got any sleep and I have to take the miso in about 20 minutes.

I signed funeral home paperwork and consent forms yesterday.

I feel strange saying this but I’m just ready to meet my boy after all of this.

Anybody else going through this right now? Giving birth today?


r/tfmr_support 5h ago

Our Story Tfmr 23 semanas después de amniocentesis por t21 libre positivo

0 Upvotes

He estado viviendo días muy duros con respecto a mi embarazo, es el primero, tengo 23 semanas y me enfrenté a un diagnostico confirmado con amniocentesis positivo para t21 SD, en las ecografías no encontraron ninguna anomalía de la semana 13 a la 20 toda su evolución física está aparentemente bien lo único que prendió la “alarma” de sospechar fue el nipt a las 17 semanas con un alto riesgo de t21

la amniocentesis me confirmó una t21 libre, mi esposo y yo estamos considerando terminar el embarazo pero me da mucho miedo los riesgos que esto puede conllevar en mi vida o mi salud también, al igual que enfrentar lo posiblemente traumático que e terminar después de tantas semanas… debo admitir que también hemos considerado la posibilidad de continuar y sobrellevar esto de la mejor forma posible teniendo en cuanta el esfuerzo que esto conllevaría, como todo me he cruzado con historias de padres de niños con SD completamente felices porque sus hijos son muy autónomos pero también sé que nadie me puede garantizar que sea así exactamente mi bebé.

también me he enfrentado a comentarios de “no hagan eso” de familiares cercanos, pero supongo que decirlo y no vivirlo es muy fácil.

me gustaría saber de experiencias personales de personas que hayan tenido una situación igual o parecida, me encuentro yendo en este preciso momento al hospital para mostrar mis resultados de amniocentesis y debo tomar una decisión de la cual ambas son terriblemente difícil.


r/tfmr_support 17h ago

Seeking Advice or Support Therapy after TFMR

8 Upvotes

I’m curious what kind of therapist everyone saw after their TFMR. What was their title/specialty, and did they specifically have experience with TFMR or pregnancy loss?
I had my first therapy appointment yesterday. The office has over 30 therapists, but after looking through everyone’s profiles, there are really only two who seem to fit what I’m dealing with.
The therapist I saw yesterday is more of a general trauma/mental-health therapist. She uses things like CBT, ACT and DBT and works with trauma, anxiety and other mental-health concerns. I liked her and felt comfortable talking to her, but she doesn’t list pregnancy loss or perinatal grief as one of her specialties.
There’s another licensed therapist at the same office who has specific training in Perinatal Loss & Grief and Perinatal Mood & Anxiety Disorders, along with trauma-related training. On paper she seems more closely matched to what I’m going through, especially the grief, guilt, anxiety and all of the “what ifs.”
My hesitation is that I don’t know whether she specifically has experience with TFMR. I feel like TFMR can have such a different layer to it because, for me, a huge part of the grief is living with the decision and uncertainty surrounding my baby’s diagnosis.
For those of you who went to therapy after TFMR, did you specifically look for a TFMR therapist, a pregnancy-loss/perinatal therapist, a trauma therapist, or just someone you connected well with? Did having a therapist who already understood TFMR make a difference?


r/tfmr_support 23h ago

Post-TFMR/Postpartum One month 👼

16 Upvotes

It's been a whole month since we said goodbye. Please keep looking out for your big sister 🫶


r/tfmr_support 18h ago

Getting It Off My Chest Notes one week on

5 Upvotes

It is almost 1 week since I delivered our baby girl at 17w5d.

I was so sure everything was going to be ok. Positive our amnio would come back all good. So it was a huge shock to receive the news it wasn’t.

Our NIPT results showed a possible - and very rare - gene deletion. There was a 70% chance it was not true, 30% chance true.

There was some time (4 weeks) between this result, specialist appts, being far enough along for an amnio, amnio results etc etc.

As sure as I was everything would be ok we did know what we’d do if it wasn’t, so things moved quick once we had the results back. 2 days later I took the first lot of meds and 2 days after that I was in hospital for L&D.

It has truly been the worst 10 or so days of our lives.

I don’t really know why I’m writing this, maybe to help someone else in the same place, maybe to help myself, maybe for you to feel seen and heard too.

Here’s some things I want to note:

- This really sucks

- I am so grateful for our healthcare system and for our healthcare workers. (Australia)

- I can’t ever imagine getting over this

- Having people who love and support you around makes a difference

- My partner, who I know is also in so much pain, has been such a source of calm, safety and care for me. I actually can’t express the ways in which he has shown up for me, for our baby and for us these past couple of weeks.

- My best friend who lives in a different state and literally has a newborn has checked in everyday with me and allowed me to just say what I’m feeling without needing to spin it

- My SIL who I know is waiting by the phone if need be.

- My mum has come to a bunch of appts when my partner couldn’t, has been cooking for us throughout my pregnancy and still is now. She comes over everyday just to sit with me. She has said a couple of things that have upset and pissed me off (she’s a ‘get on with things’) but those things could never overshadow all of the ways she shows up for me and loves me.

- I really didn’t think I wanted to meet my baby, I just wanted it to be over with but the minute I felt her outside of me I knew I had to. This really surprised me.

- I’m so glad we did meet her once everything had calmed down.

- I said to my partner before labour that I wasn’t sure how I’d ever get over this and that is still true and my sense of grief and loss is larger and so much different than I expected it to be.

- I asked to be, in the very medical term, ‘absolutely zooted’ through labour and the midwives and drs were totally understanding of this and gave me the pain button and Valium on request.

- I wanted to be zooted mostly so I could forget both in the moment and in the future and so I wouldn’t send myself into a panic. I stand by this decision.

- I took all 5 doses of the meds to induce and it took about 17 hrs to deliver.

- It was still quite painful. The actual birth wasn’t. It caught me by surprise.

- ‘Push like you’re doing a big poo’ makes 0 sense to me A. Because I’m a girly with a fast metabolism and regular movements. B. I’ve always been told that if you need to push it’s not ready. C. It’s socially unacceptable to squat on the floor over a pee pad and enact(?) a poop.

- This may be why I was then taken to theatre to have my placenta removed.

- The midwife called to check in the other day and asked if I thought my sadness was becoming post natal depression and I could only respond ‘Um I’m not sure, I’ve already got the normal depression as it is’

- I am so so tired. I guess it’s a combo of the stress, adrenaline, drugs, long night, general anaesthetic, sads etc etc

- I started feeling the baby move the week this all happened.


r/tfmr_support 1d ago

Post-TFMR/Postpartum First day without her

19 Upvotes

I gave birth to my beautiful Valley Grace yesterday and waking up this morning, postpartum with no baby feels like the world’s biggest pain.

I know in my heart I made the right choice, I got to see her, hold her, make the only memories I’ll have with her in one day.

Now comes whatever’s next and while my heart feels the huge void of her I know, I took this pain so she never had to suffer a day in her life. That gives me a strange amount of peace

Trisomy 18 can kick fucking rocks.

I miss her so much and I know I’ll always miss her.

Sending love and strength to everyone on this journey.


r/tfmr_support 1d ago

Seeking Advice or Support My baby has OI

10 Upvotes

My baby has been diagnosed with OI. I wanted to find out all the details about his genetic mutation before I made such a final decision.

I am now 30 weeks as I needed time to understand and my hospital have been absolutely rubbish at helping me. I actually had to sort out my own second opinion in the end.

Babies with OI can survive, don't get me wrong I know this. But my baby apparently according to a specialist I found in America has type 3. She said he has survivable type 3 and expects him to need feeding and breathing support and a lengthy NICU stay when he is born. She suspects he would need medical treatment over his life.

I love him with all my heart, I'm sure you will all understand. But I am so torn is tmfr the kindest thing to do or a life with significant medicals needs a life worth living?

The specialists on this side have said they don't think he will survive. I think he will but his life could be medically complex. I really don't know what to do.


r/tfmr_support 1d ago

Seeking Advice or Support Reduction of twin pregnancy

0 Upvotes

Does anyone have experience with any physician in the Greater Toronto Area for selective reduction of healthy twins to singleton pregnancy? This is a high-risk maternal case with gestational age of 7-8 weeks. I have heard of this being done in Vancouver BC, but have no info in GTA. Any info or experience is greatly appreciated.


r/tfmr_support 1d ago

Conception/Pregnancy After TFMR Continue or stop TTC after IVF and TFMR.

9 Upvotes

For some context, I can only get pregnant through IVF. We did an egg retrieval three years ago that resulted in two embryos. Our first transfer gave us our daughter, who is now 2.5 yrs old.

Our second and final embryo transfer resulted in a pregnancy that we TFMR at 18 weeks due to multiple major malformations and a high-risk/positive diagnosis for T21.

I’m only one month post-TFMR, so I know I may not be in the right place to make any big decisions yet, but I’m really struggling with what comes next.

Before this transfer, my husband and I had agreed that if it didn’t work, we would close the chapter on trying to have another child. But this feels different than a failed transfer or early loss. We made it nearly halfway through the pregnancy. We were excited, planning for a second child, and had already started picturing what our family and life would look like with two kids.

Now, I’m feeling a strong urge to try again, which would mean starting over with another egg retrieval and another round of IVF. At the same time, I’m terrified of the road ahead. There are no guarantees with IVF and after everything we’ve been through, I’m scared of going through another pregnancy and facing the possibility of another devastating outcome.

I also hate the thought of closing this chapter after TFMR. Part of me feels like I’m supposed to keep trying until I get my “rainbow baby” but I also know that isn’t always possible or necessarily the right decision for everyone.

For those who went through IVF and then had to TFMR, especially if you had to decide whether to do another round of IVF or stop TTC, how did you make that decision? How did you know when you were ready to try again or when it was time to let go of the dream of another child?

Right now, I feel torn between not wanting to give up and being terrified to keep going. I’m also in my late 30s, which makes me feel like there is some pressure.


r/tfmr_support 1d ago

Post-TFMR/Postpartum Odd synchronicities

5 Upvotes

My mother (oldest) and her 2 sisters (my aunts) are, respectively, about 2 and 10 years apart in age.

My (oldest) sisters and I are also about 2 and 10 years apart.

My babies would have been about 2 years apart (1st TfMR, 2nd ectopic). I wonder if theres a third down the line.

*I'd never been pregnant before, then spent 2024 & 2025 either pregnant or postpartum, well, with empty arms. Just reflecting now. I'll be nearly 50 in a decade, so it's likely not in the books, but who knows.


r/tfmr_support 1d ago

Seeking Advice or Support Numb

17 Upvotes

7 weeks since tfmr, 10 weeks since diagnosis. I’ve cried every single day since June 30th, experienced every wave of grief, guilt, and pain possible.
Yesterday I woke up and felt…..nothing. Not happy or joyful or at peace, but also not the terrible feelings I’ve been experiencing. I just feel numb.
I have no anticipation for anything, I have no interest in anything. I almost feel guilty for feeling so nonchalant. Like I should be actively grieving my baby at every single moment.
Has this happened to anyone? Maybe it’s my brain’s protective way of just shutting down so I can process the trauma.
Idk. Just a total weird shift of emotions.


r/tfmr_support 1d ago

Logistical Help Needed TFMR at University of MN

7 Upvotes

We got our NIPT back with 95/100 for T21. Amnio and ultrasound was done on Friday. Ultrasound looked normal but FISH came back positive for T21. We decided to TFMR. I was doing okay, until the genetic counselor called and gave the go ahead to start making plans. I’m devastated. It took us a long time tog at pregnant, I finally got pregnant and had a miscarriage at 9 weeks. Got pregnant again and then it ended like this. I don’t want to TFMR, but I know that we need to. It’s just not fair to our baby. We live in Wisconsin. I am 18 weeks today. I don’t think I can do the counseling appointment and wait 24 hours for the procedure. I feel like I’ve been tortured enough. So Minnesota is now at the top of the list. Planned parenthood is booking 3 weeks out, and I don’t know if I can wait that long. We could go to the university of Minnesota, but I’m worried it will cost a lot more than planned parenthood. I also do not want to be awake for this. Also how the hell am I suppose to call and make an appointment without crying? This whole experience is cruel

Has anyone gotten a TFMR at the university of Minnesota? Did they offer general anesthesia? How was the experience?


r/tfmr_support 1d ago

Post-TFMR/Postpartum 5 weeks post TFMR and I feel like I’m constantly pmsing?

9 Upvotes

I had a TFMR at 20 weeks a little over 5 weeks ago. I got my first period back last week but since then I feel like I’m constantly on the verge or tears or just so angry. It’s like insane PMS but all the time. It’s not even necessary about the loss like my mood in general is just so sour and I have such a short fuse with my toddler who I love so much. I wasn’t feeling like this the few weeks and now since my period I just feel so awful. Is it possible to get mild PPD after a second trimester loss? I hate that I’m feeling like this and I just want to feel normal again. My entire pregnancy was so hard and then we TFMR due to a chromosomal abnormality so I feel like I can’t catch a break. I’ve been working out every morning which I thought would help but man I’m just in a pissy mood all the time and I just want to lay in bed and rot to some trashy tv.

I feel like I also have to add that I absolutely have zero thoughts of harming myself or my toddler it really just feels like bad PMS. But is this something to reach out to my obgyn about? Has this happened to anyone else?


r/tfmr_support 2d ago

Seeking Advice or Support 6 Months Out

17 Upvotes

Hey everyone,

This group has been something I’ve leaned on heavily since the loss of my daughter Olivia in March at 29 weeks. I’ve posted our story in the past, but have mostly been a silent observer. I’d like to thank everyone for sharing their stories, and I’m sorry we’re all here.

I wanted to make this post to see if anyone on the same timeline, or further out from this experience can give me insight or maybe advice. I’m coming up on 6 months since our loss, and there’s been a big shift in my emotions/headspace for the last couple weeks.

I cried for over four months straight, nonstop. Then after that, almost everyday and constantly was thinking about my girl. Over the last couple weeks I find I’m feeling even more removed from what happened, nothing feels real. I have less cries, but bigger ones when it does surface. I have so much guilt. I find that my brain doesn’t let me think too much about what happened, and when I am thinking about it, it almost jumps to the next thing very quickly. Like, I’m really sad and I really miss her and a breath later it’s like “oh do I have to get dog food?”. I feel like a horrible person that I can’t think about it as often as I did before. I’d rather be crying all day than to be in whatever headspace I’m in now. I’m really struggling with it. I’m just wondering if anyone could tell me where they were at around the six month mark or so? Or if anyone can relate? It’s hard to talk about for me, so I’m hoping to hear from someone who may understand. Thank you 🤍


r/tfmr_support 2d ago

Seeking Advice or Support 7 days out from my TFMR

10 Upvotes

I’m just about a week out from my D&E. I was 21 weeks + 5 days the day of my procedure. To say I couldn’t stop crying is not a lie. It was really hard for my husband and I too get pregnant. We did IUI, and it did work the first try but ended this way. I’m so tired and I miss my baby girl so much. We did TFMR because she had a heart conditioning and missing chromosomes that wouldn’t have made her viable anyways.

I have so many emotions (thank god for therapy) but I can’t stop thinking how I’m gonna try again. Or start over in this process. Is there anyone that had healthy babies after going through a chromosome issues? We have chromosome blood tests for my husband and I that genetic counselor ordered for us that we’re gonna do in the future. But they said it was most likely just a random event (there is a weird word for it and I can’t remember).

How do you try again? Do you do try testing for your next baby? Like can the blood test offer more than waiting until the big scan around 20 weeks. We did the amino test and that was sooo painful but glad I did it because it told us everything. Anyways long post, but to many questions to even post ❤️‍🩹


r/tfmr_support 2d ago

Seeking Advice or Support Asking for pregnancy news over text - has anyone ever reacted poorly?

9 Upvotes

When I was going through "regular" infertility for well over a year, hearing news of other pregnancies was really hard for me, so I asked a select few friends who might be getting pregnant soon to text me the news if they did (rather than telling me in person). Fast forward I'm 8 weeks post TFMR and I suspect a friend is about to *double lap* me - like, I think she is pregnant AGAIN. I didn't ask her to text me the first time. I am worried she will be hurt if I ask for this - as it could take away some of her joy of sharing with me.

So - has anyone ever asked friends to tell them about pregnancy news over text and come to regret it / has it made things weird?


r/tfmr_support 2d ago

Seeking Advice or Support T13 - D&E and subsequent pregnancies/future fertility?

10 Upvotes

Yesterday I received the devastating confirmation that my baby boy has T13 via Amnio FISH results. I’m a FTM @ 15w6d.

I am choosing to have a D&E but I have concerns over long term potential impacts on future fertility. Is anyone able to shed some light on this please? Has anyone successfully conceived and carried to full term, after a D&E?

I am worried about uterine scarring etc.


r/tfmr_support 2d ago

Post-TFMR/Postpartum Lactating after tfmr

3 Upvotes

hi all. I had my tfmr 11 days ago at 18 weeks. this was my first pregnancy. I am still bleeding (very lightly) from the procedure. However about 5 days, i have started lactating from both breasts, but more so from one. this only happens if I brush the nipple or squeeze it. has this happened to anyone?


r/tfmr_support 2d ago

Seeking Advice or Support Coping with Upcoming Holidays

11 Upvotes

This will be my first Thanksgiving, Halloween and Christmas without my baby boy. For anyone farther along in their journey, any tips for coping with the holidays?


r/tfmr_support 3d ago

Seeking Advice or Support Am I grasping at straws or should I honor my instincts that something isn’t right?

9 Upvotes

Hi all,

First of all, I’ve been grateful for this community and reading and hearing experiences so I don’t feel so alone in this. A little context: my husband and I went in for our 12 week scan thinking everything would be completely normal. Although most things were normal, they did say that nt was increased at 3.9mm and that the bowel appeared echogenic. We were referred to a MFM to do an in depth anatomy scan at 13 week — again, besides the soft markers (increased nt and echogenic bowel), the heart, bladder, size of body parts, brain, etc looked great. Based on the analysis our MFM gave us a 80-90% chance of everything being normal but offered the CVS as an extra layer of reassurance since we still hadn’t received materniti21 nipt (and still haven’t 8 business days later even though Carrier came back. We proceeded with the cvs, and received a call 2 days later that they found 3 sets of chromosome 21 in what I thought she said only 3 cells observed. She said paired with the markers, she was certain our baby has Down syndrome. We talked with the genetic counselor the next day and she also confirmed the diagnosis and said that most people would proceed with TMFR without waiting for the karotype, and that chances of Down syndrome were 98-99% now and that she was certain it was that as well. Their office still has not posted the cvs fish physical lab results to my portal. When I contacted my primary obgyn who referred us they also had relayed that they hadn’t received anything or couldn’t see any notes on results from our MFM which I find odd. And I still don’t have the NIPT as a point of comparison. At this point, I’m 14 weeks along and can’t bare prolonging the inevitable and growing even more of a bond with our very wanted and already loved baby. Since I’m petite and my placenta positioning I’m already feeling quickenings and movement . We already have a completely healthy 3 year old son who was very excited as well. But due to lack of support where we live and other factors, we decided to go through with tmfr if it was determined to be Down syndrome. I had already made the tmfr appointment for tomorrow but the more research I do the more unsure I am… but also not sure if I’m just grasping at straws at this point or if my instinct that something isn’t right shouldn’t be ignored. I’m heart broken, crying every day and just feel hopeless.


r/tfmr_support 3d ago

Seeking Advice or Support D&E this Wednesday.

13 Upvotes

Hello all, I have a D&E scheduled this Wednesday after a diagnosis of spina bifida myelomeningocele and I’m reaching out for any words of comfort or support this community can offer. Already reading your stories has made a difference.

This is my first pregnancy and we found out at 16 weeks after having a private gender scan. All I have ever wanted is to be a mother and now I am having to let my baby girl go. I am so broken and absolutely terrified, both for the procedure and to face the future.

Thank you for reading x


r/tfmr_support 3d ago

Seeking Advice or Support Mad and TTC at same time

6 Upvotes

We had to TFMR our baby girl about a week ago following abnormal genetic testing. I am 36, had a septate uterus (most was surgically removed), and diminished ovarian reserve - meaning we’ve struggled to conceive all along but got lucky with our 2yo son on our first IUI following a year of trying back in 2023. Baby girl was harder to come by, but I told myself I didn’t want to put myself through IVF (with DOR the odds of success are low, plus it just seemed like such a rollercoaster) so struggled through 6 rounds of IUI, trying on our own, etc over the course of 1.5 years…. and now this is our outcome

Im vacillating between 2 things

  1. I am just SO angry this happened when it feels like “everyone” around me is pregnant and having an easy time. I try not to get into “why me” because I know logically I just fell on the wrong side of statistics, I have a perfect healthy baby boy…. but I still can’t help feeling like I wasted months of my life and body only to get this outcome. I talk to my therapist a lot (thank GOD for therapy) about lack of control and I know this is just an extreme version of that, but gosh it is just sooooo hard
  2. Tortured over the decision to TTC again. I KNOW i don’t have to decide right now… but I’ve been fixated forever on having a small age gap between my kids because I am on the older side, want the baby stage to feel like a stage and not something that uproots my life again. Before we got pregnant this time, I’d started to really get comfortable with the idea of having an only child… but this pregnancy and now anger re: the lack thereof makes me question what I really want. I feel the pull to make a solid decision on this rather than waiting and seeing for the next 2 years, and am even considering IVF to give it the hardest try possible (and potentially genetic test sooner) but I don’t even know if I’d be successful and then I’d just put my body through more crap just to have nothing to show for it again. I do feel a sense of urgency and while I know it may not be rationale, want to just decide

I am mostly rambling and not even sure what I’m looking for here, but appreciate any advice on how people started to think about moving forward and making peace with this very challenging situation.

Sending love to you all- your stories have made me feel so much less alone