I attended the funeral for the daughter of a friend today. What makes this pertinent to the more serious side of this blog is that she was born with anencephaly, a congenital absence of both hemispheres of her brain. This condition is not compatible with life, and Amanda only lived 72 hours. My friend and his wife knew of their daughter's condition quite early in the pregnancy, but chose to carry her to term due to a deep conviction of the inherent sin of aborting a pregnancy, no matter the cause.
I was deeply impressed by this reasoning. Medical school has liberalized some of my feelings on bioethics, and in the abstract, I don't know that my first thought would have been to keep such a pregnancy to term. Such a situation would be painful beyond my imagining, but I would have thought carrying a pregnancy for months beyond the time at which you learned the child would not survive would be more painful still. My friends though, drew from this situation several hard lessons. In a letter they read to their daughter at the graveside they said medical school had drained from them the ability to love, an ability Amanda restored in her brief stay.
"Rabbi, who sinned, this man or his parents, that he was born blind?" Jesus answered, "Neither he nor his parents sinned; it is so that the works of God might be made visible through him.
She has also given me cause to reconsider my liberalization, to ponder more deeply when life begins, and what it is. Like my time on the psychiatry ward, exposure to someone who lacks the higher brain function I possess casts me into uncertainty about the nature of life and the nature of G-d's love for it.
Amanda was also able to give a hope she lacked to others, in that despite her condition, she was able to donate heart valves after she died, to two other critically ill children. The issue of organ donation is probably deserving another entire post, and it's one I'm not able to write at present, since I'm still conflicted about it. But it is to amazing to me that this possibility was only considered by them after they decided (not that there was ever any doubt) to keep their pregnancy.
I am left in awe of the faith of others, who found support in G-d, and trusted him enough to follow their convictions, to learn hard lessons, and to see G-d's love even in pain.
Requiem aeternam dona eis, Domine, et lux perpetua luceat eis. Requiescant in pace. Amen.