I'M V W / W JUOl By Sallie Tisdale Illustration by Susan Gustavson _ ____. -............ _J J J L am a registered nurse; I have a bachelor's degree in the discipline. In the parlance of the 1980s, this makes me a "professional" nurse. lam versed not only in the bedpan and syringe but also in theories of research, principles of teaching, and techniques of management. I entered nursing school as anyone enters a profession, for a multitude of reasons. Mine included a struggle of many years' duration with a chronic illness. I was mildly disabled by pain for a time, had several hospital stays, endured several surgeries. I lost part of my body, gave it up to the surgeon and the incinerator. I had long been fascinated by the body, its astonishing intricacy, the labyrinthine twists and improbable turns of physiology. I'd dissected cadavers, worked in nursing homes. And most of all, 1 wanted to understand what had happened to me and what had been done to m e-and from that understanding what happens to us all. Not too long ago sick infants were simply laid to bed and watched - prayed over, perhaps. Nothing could be done; resignation was routine. They depend on us now, utterly, for our good will, but what is not clear is what that good will might entail. With glorious hew tools in hand the specialists grant life to even the most hopeless, the most failed, the stumbling leaps of evolution. Now babies die not from being laid to bed, but from our decision to stop working on them. The birth of a sick or tiny baby, a baby incomplete, puts into motion a gigantic machinery, a humming mammoth of tubes and monitors and scanners that seem to engulf its patrons. President Reagan's Department of Health and Human Services recently unveiled what may be the last set of regulations aimed at controlling the treatment of sick newborns. The Baby Doe controversy has continued for four years, since the time of a single case in Bloomington, Indiana, in 1982. That baby died, lending its anonymous name to the whole problem. The Baby Doe regulations require that physicians provide all available treatment to infants with only three exceptions: babies who are in comas with no hope of emerging, babies who must inevitably die despite all treatment, and treatments so "extreme''and so likely to be in vain that they would be inhumane. The disagreement is not as much as it first appears to be, with words like “extreme" and "inhumane.” It is a difference of purpose, of desire. Parents may see the treatment as a flexible factor-tha t which has changed and can be controlled. Most doctors see the treatment as a standard, a model, unwavering, growing ever more refined. The baby is the equation's mysterious, unpredictable factor X. The very smallness of the patients, which makes people feel generous, also makes the discrepancy of the power unavoidable—actually physical. This is the root o f much of the indecisiveness and, ironically, of the aggressive confidence. When it comes to the fate of people so obviously lacking in control, how else to act but with a hearty certitude? If nothing else, we might bluff our way out. J L onight I work in the intermediate-care nursery of another hospital. This is the halfway house, a stopping place on the way home for premature and sick babies. Some infants graduate from the Neonatal Intensive Care Unit to come to intermediate; others begin here and work their way home. The room is at one end of a long hall filled with pediatric beds, tucked in a comer where the hall turns, with windows looking out. People automatically peer in as they pass. It's a warm, clear April Saturday evening, and I'm responsible for two babies. To enter the ward, I must stop at the linen cart outside the door and cover my clothes in a hospital gown. So garbed, I meet my wards. Mine is an easy job, simple vigilance, as I watch two healthy premature babies grow a day older. Li is a Chinese boy, weighing in at 3'h pounds; his head is covered with slick black hair. He sleeps, skin sallow against the faded crib sheet. Brian, his next-door neighbor, is bigger at 4’/2 pounds, obviously plumper—a pale, blond baby. I can see at a glance that he is cranky; he holds his face in a tense prune. Both rest in high cribs, bundled in flannels, and both wear three-lead monitors. They are good breathers for such little creatures so early out of the sea. As the night wears on, I find that the monitors are peevish things: sometimes they sound the bugle call for an apparent reason,but usually the alarms are due to a simple wail of d iscomfort—an angst alarm. Two of the remaining three patients are also premature. Their nurse arranges her time like mine—much of it is spent in a rocking chair. Li and Brian are notoriously picky eaters, quick to vomit. I coax fractions of ounces into tender stomachs, whispering encouragement into crooked ears. We do our best, with bottles and nipples specially designed for tiny mouths and weak cheek muscles. A few ounces of formula gets down every few hours, with naps between. Li wants only to sleep, and I wake him rudely, again and again, unclip his wires and bounce him softly into my lap. “ Soup’s on,” I smile, and he settles uncomfortably into the hollow of my arm, for all the world like a working man awakened too early on Saturday morning. In the far corner of the room, with a nurse all her own, is one last baby. She is full-term, well-developed. When I stand over her crib for a peek, I am struck: she is a startlingly beautiful child. Her name is Jane lle , and she has a myelomeningocele. t ^ ^ e have great forces at our fingertips; great forces work all around us in the dark. Take a chance; nothing’s certain anymore. Myelomeningocele is a fancy abbreviated term for a ghastly defect, one of a set of conditions called spina bifida. The error begins in the very first weeks of life, Clinton St. Quarterly 21
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