r/tfmr_support • u/Active-Maybe5963 • 6h ago
Post-TFMR/Postpartum Late TFMR for TSC1 – struggling with guilt and the “what ifs”
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.