PERSPECTIVE ON MEDICINE : Playing God With a Baby’s Life : She has been battered senseless, beyond repair; why do we demand that medicine postpone the inevitable?
Last week, I held in my arms a 6-month-old girl. She had been brought to our lab to see if her constant lip-smacking was seizure activity or the repetitive movement that signifies severe brain damage.
Ordinarily, an infant’s electroencephalogram is hard to read accurately because the central nervous system is still developing. But in her case, the findings are clear and horrible: Someone (her father, it turns out) had shaken her so hard that her brain had loosened from its moorings. The consequent rips and scars and scrambling of the contents of her head had disconnected her future. She is cortically blind, meaning she is blind in her brain, not just in her eyes. Since her central nervous system is in a constant state of short-circuit, her legs are stiff and lifeless. She cries, inconsolably, the primitive cry of the brain stem, without connection to the higher functions of human commerce. Her feeding skills (suck and swallow) are irreversibly disengaged; a tube that has been run down her nose into her stomach most likely will be her only route for nourishment as long as she lives.
The damage done to this baby is permanent and devastating.
Naturally, one’s first target for anger is the father. He should be prosecuted. He should be sterilized. He should be put into permanent psychotherapy. All these are options that our society will debate in the courts and in the Department of Children’s Services. I haven’t met him, but I hear he says he didn’t know, says he was trying to stop her whining, says he loves her.
The classic profile of this kind of parent is one who was poorly treated as a child, one who has no access to intuitively loving relationships with children--or to anyone else. The picture is often compounded, as it is in this case, by the stress of poverty, although child abuse crosses all economic, racial and religious lines.
But now that we have this pitiful child on our hands, now that she has been in my arms in a way that generated an alarming kind of love for her, I have a second and more important cause for anger: what will happen to her next.
More than likely, she will be placed in a foster home. She will receive pretty good medical care, paid for by the state. She will get nourishment through her feeding tube and she will grow. Eventually, splints applied to her legs and arms will modify the inevitable contractures toward which her useless limbs will tend. Her pulmonary system is compromised and she will probably spend some time on a respirator. She may or may not experience pain and discomfort, depending on the extent of brain damage.
She could live for a long time, years. She still looks like herself today, like a stunted 6-month-old. But soon, she will not be cute or easy. She will never walk or talk or understand anything.
My point is this: Once we are absolutely sure that this condition is irreversible, maybe in another few weeks or months, I would make the radical proposal that we pull out her feeding tube and let her die a comfortable and planned death. But the law dictates the impossibility of this for her.
Professional fears about malpractice and family retribution also bar this kind of death. Dr. Jack Kevorkian’s sensationalist practices have only served to cloud the issue further, hampering discourse. But the real frustration is located more deeply in our society’s persistent, newfound and usually theological obsession with “right to life.â€
The promise of science and medicine is such an alluring promise: that we can conquer the disease of living. In this precept, contemporary with the Industrial Age and the identification of Nature as something to be controlled, life has become a contest with death. Meanwhile, all around us are strewn the unfortunate and disabled survivors of that struggle, alive but not at all well.
Modern medicine makes miracles, but our understanding of the gifts of technology is incomplete. Our enthusiasm eclipses our ability to see the other side of the coin. I don’t mean just the mistakes and the failures. Technology has conferred an arrogance that distracts us from envisioning the inevitable and planning for it decently, so busy are we trying to defeat it.
More and more of us are coming to understand that resources for health care are finite. At some point, soon, this crisis in availability will require that we learn to talk about life, death and money in the same breath.
The clash of technology and quality of life, the inevitable failure of technology against death, the increasingly articulate voice of the consumer defining what quality means, and not just to the provider--all these things will force our hand. It is not simply that we cannot afford to pay for everything for everybody, although that is part of it, but the question will become: What is the goal of doing everything for everybody? Do we just race against time and death until we give out?
It’s what we do with our bodies that matters, much more than the possession of flesh. We must begin to talk again about life in the context of love, happiness, significance and culture. I wish, fervently, for a house where death is back at the table, where we can participate with dignity and compassion in its inevitable process, where negotiated dignity is more honorable than victory.
For this baby girl, I’m afraid, the narrow and oppressive definitions will prevail, and she will go on and on into her very empty future. I hope I never see her again; I don’t need to see her again to know that I saw her fully that day, saw all of what she could have been and feared for what she will probably become: victim to her father’s wrath and ignorance first, and victim secondly and just as irretrievably to our cultural reluctance to accept death as part of living. I will remember her, and love her, and grieve for her.
