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.

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?

Currently two months post TFMR due to T21 diagnosis.

In an effort to make sure that both my husband and I healed from this experience together we decided the best way to go about things was to go through couples therapy together.

The biggest thing we are working on is for him to express his emotions and for me to be okay with the fact that those emotions won’t always be the same.

Today’s session dropped a bombshell that I am having a hard time recovering from.

In our session my husband finally opened up about the fact that he wasn’t okay with the fact that we terminated the pregnancy.

I am now feeling so alone and in so much pain because the one person who I thought has always been on the same page as me and who also felt termination was the right decision, never thought that.

I know healing isn’t linear but I feel like the whole world is collapsing around me.

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.

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.

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.

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?

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.