when the fetus is floating in a syrupy fluid, barely formed and silent. At this tender age ontogeny is recapitulating phylogeny; like a polliwog, the unborn curls in a crescent, its arms mere flippers, its froglegs drawn casually close. The spinal cord forms first in the center of this germinating seed and grows both ways, up to the top-heavy translucent head, and down to where our tail was millenia ago. Most of the time the cord grows straight and true, and then the vertebrae form, encasing the cord in a strong and flexible tube of bone. At times, however, some part of the bone fails to form. I am one of the thousands of people with spina bifida occulta—that is, the back of one of my lower vertebrae is missing. But my spinal cord lies in its hollow undeviating, as it should. Looking at me, nothing seems wrong— and really, nothing is. Except for that odd gap on my x-rays and a few misaligned vertebrae, I am fine. And lucky. Without its cage, the cord can curl up outside the skin in a delicate cyst of spinal fluid and milky membranes. Myelomeningocele is a severe type of spina bifuda. The cord and its nerve fingers tentacle out and twist round in a blemish perched on the back, a great shiny bloody balloon of a blemish as big as your palm and an inch high. It swells out like a lava bubble threatening to burst. Every 800 births a woman is delivered of a child like this, unbidden and shocking, its spinal cord open to the harrass- ing, dirty world. What happens then depends on several circumstances. Often, much of the damage is already done: paralysis, retardation, misplaced hips. The height of paralysis depends on the position of the sac of spinal cord; it may affect the legs, the trunks, or even the arms. The bowel and bladder are often paralyzed too, flaccid, so wastes dribble constantly. The spine may be twisted sideways or up in a hump, the hips may be out of their sockets, and the feet may be clubbed, atonal muscles pulled by healthy ones above into odd shapes, taking the bones with them. Nine out of ten myelomeningocele babies are born with hydrocephalus, in which the cerebrospinal fluid accumulates in the brain and the head swells, sometimes monstrously, pressing on the fragile brain and crushing the cells. The eyes bulge out in amazement at the unexpected pressure. Certain diseases become metaphors, such as cancer, leprosy. They wreak a kind of devastation on the body that seems more than simple-minded cell growth, more than misfortune. They seem to be symbolic of the larger condition, of humanity’s changing states. Myelomeningocele, in a subtle way, has also been made into a metaphor. It is an example, a prototype, often used for better or worse in arguments about the fate of ill and ill-made babies. More than one Baby D oe h a s s u f f e r e d f r o m m y elomeningocele. The injury can cause such extensive damage and guarantee such permanent crippling that even the most conservative textbooks discuss— albeit glancingly—the possibility of withholding care. Rather elaborate systems have been developed to determine the probability of a quality life for a baby with a myelomeningocele, and many neonatal units have practiced a kind of unwritten, random protocol for treating some babies aggressively, others with simple supportive nursing care. One of the tricks of myelomeningocele is that, though devastating, it may not be immediately fatal. With many of the worst birth defects even the most zealous pediatrician hasn’t a hope in hell of saving the child’s life. Myelomeningocele babies, though, can surprise. Whether it is for the benefit of any casual observer who may happen across them, or for the less-conscious needs of the writers themselves, the words used to discuss this problem are illuminating. To delay surgery is to open the door for death, but this is said very formally, very carefully. I have a book that states: “There are those who recommend that surgical repair is best delayed for further assessment of neurologic function, intellectual potential, and extent of complications." I open another book and find: “ The decision of whether or not to treat must be made before neurosurgery is undertaken, since closure of the defect assures at least temporary survival.” In these sentences, held at arm’s length (“ there are those. . . ” ), is such confusion. It is a veiled anguish that we can’t discuss. Most of us see a baby like Janelle and see our own weaknesses and failings so clearly; we see our selfishness. We see her and ask only that the cup be taken away from us. J ^ ^ r ia n is unhappy. Like so many he is anxious and easily stressed; this is a tough, bright world. The slightest disturbance and he cries for comfort, for peace; he has weltschmerz. I pace with this fretful one who sends the monitor running for cover. His head rolls on my shoulder, but when I lay him flat, he howls again. We pace more, and I have time to watch. Janelle’s nurse busies herself over the dressing, an intricate swab of medicine E v e ry 800 births a woman is delivered of a child like this, unbidden and shocking, its spinal cord open to the harrassing dirty world. and gauze pads. It is significant that this baby is already named. Many parents, staggering from the blow, withdraw from their errant child and cannot call it by the name that a few days earlier had rolled so lovingly off the tongue. Janelle’s wound opened in the lumbar area, high above the soft concave curve of her back. She is paralyzed from at least her chbst down. She has yet to move an arm or hand. Her head has begun its inexorable swelling, and tomorrow a shunt will be placed in her skull to drain fluid off her brain and deposit it harmlessly in her abdomen. She may be quite retarded, and with every hour the damage increases, brain cells popping one by one. Spina bifida, in all its forms, tends to run in families. With one child like Janelle, one must count on the possibility of more—a four to eight times greater chance. The luck of probability doesn’t hold in genetic gambling. But medical science holds out a tempting choice— the defects of spina bifida can be de1 he essential myth of Baby Doe is that parents who choose to forego aggressive treatment for their defective baby are malicious, heartless and unloving. tected by amn iocentesis. A needle plunged into the amnoitic fluid surrounding the developing fetus removes a few c e lls . They are exam ined m ic ro scopically for shape and placement of the master genes—which shell is the penny under in this game? The test is done around fifteen weeks, almost four months into a pregnancy, and results come more than a month later. Writing about prenatal diagnosis, one researcher blithely states: “With these techniques, many congenital malformation syndromes can now be diagnosed at mid-trimester and prevented.” Through his entire discussion, this doctor never uses another word to describe the abortion he is advocating. He is not concerned with aborting a fetus in the fifth month of pregnancy. He is concerned with prevention—preventing a damaged life. As soon as Janelle’s dazed parents were able, they gave permission for surgery, to slit her back and slip the cord in place. Without surgery she would quickly have gotten meningitis, which would very likely have killed her. Without immediate surgery—within a day or so of birth—she would not have been “ assured at least temporary survival." The first door is opened and closed; this one locks behind you. Writing about the dilemma of treating these babies, an ethicist suggested: “The basis of selection for treatment in cases of myelomeningocele ought to be the presence of a commitment by the parents to care for and nurture their afflicted child.” A young woman, still a teenager, enters the nursery with a flourish, tying her gown behind her as she crosses the room to Brian’s crib. She introduces herself to me when I stand to hover over his crib where he lies sleeping at last. She is his mother, Linda, thin and all nerves. She scoops him out and bounces him around the room, talking. It is an hour before he is due to eat and he shows no signs of hunger. Despite my suggestion against it, Linda opens a new bottle and settles down to feed him. She has little success with the tired baby whose stomach is still nearly full, and rocks rapidly in the chair while she fusses with-the nipple, talking to no one in particular without pause. At the height of the evening we have a new admission to our small room, necessitating the movement of cribs, the rearrangement of chairs and monitors, the making of room. Sarah comes in a high, hot Isolette; she is not yet three pounds, but she’s a day old, wrinkled, red and simian. Even the veteran nursery nurses crowd round her to coo and moo. She sleeps on, eyes clamped tight against the bright light, naked but for a diaper smaller than a table napkin. r J - or the Christmas of 1984 the Cabbage Patch Doll manufacturers, ever eager to catch new levels of tolerance, marketed (with success) a new model, the Cabbage Patch Preemie, hairless and pink and bulbous-faced. I wonder what is next. Big-skulled hydrocephalus dolls? Cleft palate babies? Perhaps a twisted- limbed spina bifida. They could call it Baby Doe. I am sitting in the chair with Li, wiggling the nipple in his mouth to remind him of our mutual goal. A young couple appears at the window. Their faces are blank, composed. The man, tall and handsome and mustached, wears a yellow baseball cap emblazoned with the name of a trucking company. He helps the short, plump woman into a hospital gown outside the door. She drapes it over her clothes and smooths it down. He follows suit, then reaches for the baseball cap at the last moment, pulling it off in a crumbled fist like a farmer entering church. He stands shyly by the door, a young man in jeans and button-down shirt dressed incongruously in a hospital gown. She moves at once to Janelle’s crib, to her daughter. Because of the surgery on her back, Janelle must lie on her belly and be moved on a board that enforces her prone position. Of course, she cannot be breast-fed; the angle would be impossible. She is changed prone, fed prone. To lift her, her mother must lift the whole board. She cannot curl her up in her arms, cannot cradle her. The nurse helps her balance the board on her lap, Janelle spread before her like a feast. Her husband moves to her side and scrapes a chair up, embarrassed and polite. Brian’s mother talks on in the background, and I look at Janelle’s mother. She is beautiful, pale, full of face, tired. Her dark hair hangs round her face, which emanates a sweetness grown brighter by the ordeal of a long labor and the violence following. She keeps her face calm, tranquil, running one hand lightly over Janelle’s hair, softly, softly, without pausing, speaking to her in psychic whispers. Occasionally she confers with her husband, and they nod their heads together, seeking comfort one from the other. They are an island. The essential myth of Baby Doe is that parents who choose to forego aggressive treatment for their defective baby are heartless, and unloving. Surely such a myth is comforting, blending as it does all shades of gray into simple black and white. The baby, clearly, can’t be wrong. Therefore the parents are; they are cowards. They choose the easy way out. All choice is hard. To choose not to do is hard. Janelle’s parents—have they any idea, any idea at all, about what they are getting, into? Have any of us, merrily whistling in the dark down these echoing corridors? Brian’s mother announces her exhaustion and rises to leave. I offer to take her son, whose feeding time and discomfort have now arrived. Linda stretches and yawns, and wonders if it would all right if she went home to sleep now and didn’t return till morning. Yes, I assure her. She gathers her bag and leaves. I feed Brian, also with little success, and change his diaper. Time for tests. I take his wet Pamper across the hall and squeeze it until a few drops of urine fall into a test tube. With a simple chemical I check it for sugar, to assure the stability of his metabolism. Li has a diaper changed too, a bottle, and is patted to sleep, relieved to be left alone. Brian cries and screams and trembles. Anyone will collapse in a few days with an irritable baby, and I wonder about Linda’s endurance. A half hour after he falls into slumber, she returns with relatives in tow and wakes him so they can see. He fusses and won’t smile despite her exhortations. The room is suddenly crowded and noisy. I am as annoyed as if she had grabbed hold of my own sleeping baby. Linda is determined to hold court and speaks loudly to the room. “ He’s never been so cranky before,” she tells us. “ I had a friend,” she says to all. “ They said her baby was going to be retarded. Can you imagine that?” And she shakes her head. My heart sinks. Janelle’s mother smiles politely, nods her head. She strokes and strokes. As the evening wears on, I see the ripples in her smooth expression. Her face works with great subtlety; she begins to learn her new life. She is sorting out dreams, discarding ideals, re-shaping the corners and crannies for Janelle’s distortion. It is not just the physical world that must be adjusted to fit Janelle; that is easy enough in comparison . Both mother and father must be made to fit her, too. The chaos settles. Linda, nervous and haggard, tightly wound, leads her kin out, and with effort I get Brian back to sleep. When all is quiet, I go to find a head nurse and tell her my concerns about Linda. She lacks confidence, knows nothing of baby care. She is just a girl. When Brian is strong enough to go home, she will expect him to perform in certain ways: it is a textbook family for child abuse. It is all I can do. When I return to the room, Janelle’s parents have left. I never learn their names. We gather our charts and note accounts of the evening almost done—how much drunk, how much spit back. When the writing is over, we circle our chairs protectively round the cribs and talk. I discover, in passing and trying to disguise my interest, more about Janelle’s parents. They are children, too, as I suspected— she is seventeen years old, he a year older. Janelle could have been worse, after all. I have spent more than a few hours in the dim library stacks of the medical school library, turning pages of color photographs, stark nightmare after stark n ig h tm a re . Here is a c h ild w ith rachischisis, her entire spinal cord and brain exposed to air; the child is irreparably split from forehead to tailbone as though with a cleaver, a fleshy fissure of a baby. Here is a holotelencephalic boy, head puckered and fused in the center with only a blank, fatty bulge for a face. And here are the twins, melded together 22 Clinton St. Quarterly
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