A View To A Kill
I find it difficult to start this post, so I’ll use that difficulty as my entry point. This difficulty arises as I try to manage what has become a teeming chaos of beliefs about life, love, and the pursuit of happiness. As gratuitously obscene as may be the media tumult surrounding Terry Schiavo, there’s no circumventing the value of her plight and its coverage as a motivator for discussions like this. For my part, the last half-year has seen challenges to my fundamental senses of right and wrong, love and hate, and where I fit in my own world and the worlds of my loved ones.
About two months ago, I sat in the office of my fiancé’s ob/gyn, which doctor was poring over the copious printouts of our daughter posing for the ultrasound tech. “I’m a little concerned,” she said. “Your daughter may have a heart defect. I’d like you to get a second opinion.”
I’ve heard of heart defects. I’ve flipped past the telethons. I’ve looked askance at coverage on the evening news of the results of some recent study, or some result of Congressional decision on appropriation of government funding for such research. I’ve considered to what lengths I might go to retaliate should someone trespass on the welfare of my children, criminally or negligently. I’ve never seriously pondered what I would do if one of my children were set upon by any serious health condition.
Ultimately, really, there’s not much pondering about it. My daughter will be born with both a congenital heart defect–most likely Hypoplastic Left Heart Syndrome (HLHS)–and Turner’s Syndrome, a disorder afflicting girls with only one X chromosome. Each carries with it its own brand of difficulty in the natural course of living, and together they’ll make for heavily burdened existence.
A quarter century ago, a diagnosis of HLHS was effectively a diagnosis with peripartum death. Two options existed: either the pregnancy was terminated; or the baby was delivered and allowed to die in as comfortable an environment as the parents could provide. Since then, a small variety of surgical options exists which give much greater chances for recovery and some approximation of normalcy in livelihood. The most common procedure for treating HLHS is a series of three open-heart surgeries, interspersed over the course of the first three or four years of the child’s life. The mortality rate is nonzero; but it isn’t nearly 100% anymore, either. Children afflicted with a heart disorder and a chromosomal disorder, like Turner’s, have higher mortality rates.
The beautiful life growing in my fiancé’s abdomen has so much of the deck stacked against her as to make us wonder whether forcing her to live through them is really the best choice. This, then, pits reality against our notions of right and wrong, life and death, and, specifically, the morality of abortion. We can no longer ride the fence.
I haven’t made the decision, personally. Luckily, the prognosis (incomplete so far that it is) has been positive enough that I’ve been able to evade it some. I suppose that in and of itself constitutes a decision of at least a loose threshold of severity above which I want to see her born and grow into whatever kind of woman she can, and below which I couldn’t bear but think that delivery would be into a horrible world for her. The threshold remains nebulous, and I’m not sure how I’ll know we’ve crossed to its underbelly. For the moment, I am afraid but hopeful.
Terry Schiavo’s family members each seem to have different, sometimes conflicting thresholds, it would seem. Her parents may not fathom a point below which they’d consider releasing their daughter to death; and her husband maintains that Terry has crossed a threshold of her own making (and his interpreting). Reflecting on this, I find any lack of such a threshold to be the hallmark of barbarity and cruelty. There must be a minimum level of liveliness to preserve for someone, anyone, especially your supposed “loved ones”, who themselves are unable to preserve. If, through action or inaction, I should ever let fall below this anyone for whom I claim to care even a little, I will certainly have become a person I would not currently like to meet.
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