Getting screwed

One thing that I continue to be tormented by is this idea that our decisions in Eli's treatment caused his suffering and death.
I can logically say we did not have a choice. We went to the very best doctors, we tried with little to no success to keep Eli as stable as possible, he certainly would have died without a bone marrow transplant, it was our only option. These things are all true, I think. But the medical treatment was brutal, inhuman, suffering. And I watched it. And I signed release after release, consenting to more, more, more interventions. So it feels like I did it to him. And he didn't deserve it, any of it.
But I am also able to recognize that there was nothing else we could have done. We were screwed, he was screwed, from the moment he was born. Florida started screening for immune deficiencies (T-cell related deficiencies) 17 months after Eli was born. Immune deficiencies are rare and difficult to diagnose outside of newborn screening, and even now Eli's has yet to be discovered. Even after all his treatment, even after $22,000 in genetic testing, we still don't know exactly what was wrong with his immune system. It's not understand and so there isn't a name for it. We just don't know. His DNA was supposed to have been sent to a researcher doing indepth immune studies on a specific gene, but I am not waiting for answers that will not come.
Yes, he had Evan's Syndrome. Yes, his body created antibodies that attacked his red blood cells, white blood cells, and platelets. Yes, it was severe and not well controlled and what led him to bone marrow transplant. But this is an autoimmune disease which in Eli's case manifested as a result of a malfunctioning or non-functioning immune system. The malfunctioning/non-functioning immune system could have been identified at birth. But not until September 2012 when Florida expanded newborn screenings to include immunodeficiencies. Too late for Eli, too late for us.
We have friends whose child was born one month prior to the implementation of immunodeficiency newborn screening in Florida. Their child is dead now. One month made the difference. One month of the governor (Rick Scott) playing political games. Really. It cost their family their child's life.
How do you live with the knowledge that no matter what you did, you were screwed from the beginning? That your child would likely die, you just didn't know it? That your child's best chance was a coin flip and it necessitated some of the worst suffering? That you agreed to put your child through all of that?
If I figure it out I'll let you know.