On Weighing Life and Death
Nine days ago, on the third day of her life, my daughter went into an operating room, and stayed on the table for about seven hours. The procedure itself—the Norwood—went smoothly enough; but the next 12 hours were harrowing to say the least. Eventually, however, she was stabilized.
Over the course of these nine days, we found a comfort in having this seventh child in our lives, the comfort you begin to confuse with surety. The idea that we would live out our days as parents with only six became ever more remote. I don’t know that that isn’t the best way to face these things; but it does set you up for a potential crash.
That crash came on Wednesday. For months, we’ve consulted obstetricians, pediatric cardiologists, and pediatric endocrinologists, as well as some literature available online, and had developed a sound if rudimentary understanding of what our life, Elizabeth’s and her parents’ and her brothers’ and sisters’ lives, will entail. We decided that we were fortunate to live so close to one of the leading centers of pediatric cardiac medicine, because we had available an option other than heart transplantation, or as comfortable a death as we could provide. Ours would be a family in the minority among those collectively suffering from severe congenital heart defects, because, once all three operations had been successfully performed, Elizabeth would have the opportunity to live something close to a normal life. The magnitude of her struggles would fall into the range in which most people find theirs. Life would be good.
However, on that Wednesday, we were informed that these procedures effectively prolong a life afflicted with such a severe heart defect, but do not bring such a life into the proximity of normalcy as we’d thought. The procedures are considered “palliative”, not reparative. In all likelihood, Elizabeth’s heart will begin to break down under strains for which it is not adapted somewhere between her 15th and 20th birthdays, though it may fall soon before or after. That means we will, again, face the choice between a comfortable death and the rigors of heart transplantation. Only this time, she will be party to the decision.
Every parent has eventually to sit down and have one or another of the standard battery of “difficult discussions”— about drugs, pregnancy, religion, identity. If they’re worth a damn, this does not devolve into 30-minute diatribes from within the illusion that talking at your kids is instructional in the least. In our case, however, it seems the discussion will be literally of live-or-death import.
I mention this not because I need the modern American brand of reassuring pity. I mention this because…because I can handle talking about drugs and sex and violence and the maintenance of a sense of reality in the face of desensitization; and I can talk about the importance of math and art and true self awareness and why the latter trumps the former but you’ll likely need all of it to get there. I don’t quite know how to handle, in anything like a calm, level-headed manner, asking a child whether she wants to risk what might be years of painful treatment and long periods of hospitalization just to stay alive, or if she wants to live what life she can for as long as she can without such heavy burdens of maintenance.
There is no question, though, that, if the condition progresses as we’ve been told it most likely will, Danielle and I will need to have that talk. That decision cannot be made for a 15-year-old, and maybe not even for a 12-year-old. I don’t quite know where the threshold lies; but if I can start demystifying where babies come from—how life begins, no less—at five, there isn’t any reason to think that’s too soon to talk substantively about how life may end, even if such is for immediate application and not abstraction.
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