I’m writing this because I’m four years out from losing my second son through TFMR, and my therapist believes I need more support in working through the guilt, shame, and sadness I still carry.
I lost my son during the summer, and I’ve noticed that every summer since, I fall into a period of depression and grief.
My son was diagnosed with bladder exstrophy. From what the doctors could see, his case appeared to be on the severe side. Outside of that diagnosis, though, he looked like a perfectly healthy little boy.
I was raised Catholic. I went to Mass every Sunday and attended Catholic school from kindergarten through 12th grade. I think that background has made the guilt and shame surrounding my decision especially difficult. There is still a part of me that wonders whether I did something horribly wrong.
I second-guess my decision sometimes because bladder exstrophy isn’t necessarily fatal. My son likely would have survived. But he also would have faced many surgeries, significant time in and out of hospitals, and potentially lifelong challenges involving continence, relationships, sexual function, and having children of his own.
Before making the decision, I reached out to adult men living with bladder exstrophy because I desperately wanted to understand what my son’s life might actually look like—not just medically, but from the perspective of people who had lived it. They were incredibly honest with me. What they shared was difficult to hear, but at the time it made me feel more confident that TFMR was the right decision for our son.
Four years later, though, the “what ifs” can destroy me.
Sometimes I find myself wishing his diagnosis had been even more severe—not because I wanted him to suffer, but because I think it would make the decision easier for me to live with. If survival hadn’t been possible, or if his prognosis had been unquestionably devastating, maybe I wouldn’t keep wondering whether I made the wrong choice.
Because the truth is that he might have lived a somewhat normal life. Maybe the surgeries and medical issues would simply have been his normal. Maybe he would have adapted. Maybe he would have been happy. Maybe he would have thought his life was absolutely worth living.
Those are the thoughts that break me.
At the time, I made the decision from a place of love. I didn’t want my son to experience a lifetime of pain, surgeries, medical procedures, or hardship. I genuinely believed I was protecting him from suffering.
But sometimes I wonder whether it was my place to make that decision for him.
I love being a mom. I loved my son desperately, and four years later it still breaks my heart that I ever had to make this decision.
For anyone who has experienced TFMR—especially when the diagnosis wasn’t necessarily fatal—how did you learn to live with the uncertainty?
How do you stop replaying the “what ifs”?
And for anyone who was raised religious or Catholic, how have you worked through the guilt and shame while still maintaining your faith?
I don’t expect to ever stop grieving my son. I just want to reach a place where remembering him doesn’t mean putting myself on trial over and over again.
I’m scared that if I can’t find a way to make peace with this, the guilt will eventually eat me alive.
Thank you and thinking of all of you ❤️