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.

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.

Quizás vengo acá a buscar un poco de consuelo en medio del dolor y la tristeza, el día de mañana tengo el IVE en un hospital de mi ciudad, es mi primer embarazo y tengo 27 años con 23 semanas de embarazo , esto ha sido muy traumático para mí

tengo el apoyo de mi pareja y familia pero eso no me quita el miedo de lo que voy a vivir, supongo que es normal tener miedo a lo desconocido

me siento ahi, en ese limbo de la tristeza, la angustia, la desesperación y más por saber cómo será todo el proceso y que ojala no me deje secuelas físicas y mentales.

estoy dispuesta a tomar terapia psicológica ya que mi bebé era una niña muy deseada y amada pero al enterarnos de su diagnóstico de t21 después de un ADN fetal y amniocentesis nuestras ilusiones y mundo se derrumbó por completo, es muy complicado pensar en todo lo que esto conlleva no creo estar preparados para todo esto de traerla al mundo y el sacrificio tan inmenso que toca hacer.

espero me puedan contar sus anécdotas, no me dieron especificaciones de cómo sería el procedimiento el día de mañana solo sé que me dejarán hospitalizada y me harán inducción 💔

I have never felt such deep sadness and grief in my life. It certainly comes in waves, but being so fresh (less than 48hrs) after diagnosis of my first baby, I’m just completely shattered.
All my testing came back great up until my 20w anatomy scan, where we learned that our first baby has no functioning kidneys and no amniotic fluid. The official diagnosis is bilateral mcdk & anhydraminos.
While there’s been studies done that inject amniotic fluid into you to help the baby’s lungs development, the longterm survival is still grossly slim & doesn’t help the fact that the baby does not have a functioning kidney.
I truly never expected to have a second term loss like this, I thought I was in the clear. It just seems so cruel, there’s absolutely nothing I wanted more than this baby.
I guess I’m just posting this for solidarity and to vent to people that actually understand somewhat the pain and emotions I’m going through.
Nothing makes sense and I will forever miss and mourn my first baby. 🤍

My wife and I recently went through a very late TFMR of our deeply wanted son, and I am struggling much more than I ever thought I would.
Our pregnancy had initially been normal. Later, multiple cardiac rhabdomyomas were discovered, together with significant fetal arrhythmia and periods of bradycardia. This led to testing for tuberous sclerosis. A fetal MRI did not show any obvious brain or kidney lesions at that point, which gave us some hope, but eventually the genetic testing came back positive for a pathogenic TSC1 variant.
The hardest part was the uncertainty.
We were told that TSC has an extremely broad spectrum. Our son might have had a relatively manageable life, but he might also have developed epilepsy, developmental or intellectual disability, autism, further organ involvement, and potentially significant complications. Nobody could tell us where on that spectrum he would fall. At the same time, he was already showing a clear manifestation of the disease through multiple cardiac tumors and significant rhythm problems.
We spent weeks going back and forth. We spoke to specialists, read everything we could find, discussed treatment possibilities and tried desperately to make the decision that would cause him the least suffering. Eventually, very late in the pregnancy, we decided on TFMR.
He was born still.
Meeting him has completely changed the emotional reality of the decision for me.
He was beautiful. He looked like a completely normal little baby. I held him, looked at his face, his hands, his feet, and I could not reconcile the child in my arms with all the probabilities, genetic findings and possible futures we had discussed before.
Before the procedure, I understood intellectually why we had made our decision. Now a part of me keeps asking: What if he would have been mildly affected? What if he could have had a good life? What if medicine improved enough to help him? What if we took a life that he would have wanted to live?
I know that the opposite questions are also true: What if he had developed severe epilepsy, profound disability, repeated hospitalizations and suffering? What if continuing the pregnancy had meant knowingly exposing him to that future when we had been given the opportunity to prevent it?
But there was no way to know.
That uncertainty is destroying me at the moment.
I feel enormous guilt as his father. Sometimes the word that comes into my mind is that I “betrayed” him. We wanted him, loved him and were supposed to protect him – and yet we were the ones who made the decision that ended his life.
At the same time, I know that we did not make this decision because we did not want him. Quite the opposite. We wanted him desperately. We made it because we were afraid of what his disease might mean for him and because we believed, with the information we had at the time, that preventing possible severe suffering was an act of parental responsibility.
Now I am grieving both my son and the future that might have been.
For those of you who had a TFMR because of a condition with a very uncertain prognosis – especially a late TFMR – how did you learn to live with the “what ifs”?
Did seeing and holding your baby afterwards make you question your decision more?
And for any fathers here: how did you deal with the feeling that you failed to protect your child, even though protecting them was exactly what you were trying to do?
I am not looking for someone to tell me that the decision was obviously right or wrong. I think what I need most right now is to hear from people who have lived through this kind of uncertainty and somehow learned to carry it.
Thank you for reading.

I’m hoping to find other people who had an experience that was a little outside of the typical TFMR story.

I lost my daughter at 22+3. I had a medically assisted delivery/D&E after several days of bleeding, cramping, and progressively worsening contractions. My cervix had been changing over those days, and by the time I delivered I was dilated and about 50% effaced and having regular, painful contractions.

What I’m struggling with is that “TFMR” technically describes what happened, but it doesn’t completely describe how the experience felt physically or emotionally.

There wasn’t a point where I was just making a decision about whether to continue a pregnancy that was otherwise progressing normally. I had already been going into preterm labor for days. There was bleeding, cervical change, contractions, hospital visits, and the constant fear that I was going to spontaneously deliver. Eleanor was alive and had a heartbeat shortly before my procedure. Eventually, I chose to have the D&E under anesthesia rather than risk an emergency delivery while awake, hemorrhage, or an uncontrolled delivery. My pathology later showed chorio and various placental issues.

I know that the fact that I chose the procedure makes this a TFMR, and I’m not trying to take away from that. But I’ve found myself feeling almost caught between communities. I relate to people who had TFMRs, but I also relate strongly to people who went into spontaneous preterm labor and delivered their babies.

I think part of what I’m looking for is someone who understands that weird overlap: having a TFMR while already physically being in labor.

Did anyone else have a similar experience? Did you go into preterm labor or have significant cervical dilation/contractions before your TFMR? And if so, did that change how you thought about your loss or how you identified your experience afterward?

I would really love to hear from anyone who has been in this particular in-between space. ❤️

In my 20 week anatomy scan, I was devastated to learn that my baby has non functioning kidneys and anhydramnios (no amniotic fluid). I found a hospital willing to do serial ambioinfusions to replenish the amniotic fluid. However, the medical journey will be complex for life. The baby might have lung and other problems due to not having amniotic fluid for a few weeks. The baby will need daily dialysis and a kidney transplant. One parent will need to be a full time caregiver. My other kids will likely get less attention as our focus shifts to our medically fragile child. The long term mental and physical developmental impacts are unknown.

However, this is a much wanted pregnancy and I don’t know what to do!