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 fortn, 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 exE v e r y 800 births a woman is delivered of a child like this, unbidden and shocking, its spinal cord open to the harrassing dirty world. ample, 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, held1 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. - A d 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 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 chest 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 detected by amniocentesis. A needle plunged into the amnoitic fluid surrounding the developing fetus removes a few ce 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. 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