Where medicine fails, a nurse's compassion thrives
I know I will not remember her name.
I remember instead the labels attached to her. Ichthyosis. Hydrocephalus. Looking back, I realize there was probably some error in her very fabric. There's a text, Smith's Recognizable Patterns of Human Malformation, that I think of as the syndrome bible: nearly a thousand pages on what happens when the most basic stuff of a body goes wrong. There are pictures of malformed babies and children, hundreds of them, all with black marks, like blindfolds, over their eyes. Protection for their privacy, their identities. But there is also the prurient eye of the camera, recording the places where the coding of a human being stumbles. Where cells, multiplying one by one in the darkness of a womb, branch away from the well-lighted, well-provisioned road of normality.
I loved the language of medicine from the first, and I still love it-the precision of it, the way it gives shape to chaos. If I look up ichthyosis and hydrocephalus in Recognizable Patterns, I may find some imperfect understanding of where her cells failed her. I may find a photo of a baby with an immense head, a wasted body, and the skin of a fish, along with a bloodless description of how such a baby might come to be in the world. I would take comfort in it. The language of medicine names the unspeakable, and moves on.
Yet her name is all she had to announce herself, and I've forgotten it. That feels like failure.
I can see her, though. The fine scattering of reddish hair that covered her huge, fluid-filled head, the dilated blue of her veins mapping out her scalp. I see how the bones of her skull were like islands, separated by wide straits of soft tissue. And I see the scales that covered every inch of her, except for the palms of her hands and the soles of her feet. Scales that flicked off, left raw and bleeding places, if I rushed with the washcloth when I changed her diaper. Dead scales that sloughed off in her incubator. She was a sacrifice for a primitive god, pinned on her slab by the sheer mass of her head. Entranced and alone behind the translucent leavings of her skin, a halo made of insect wings.
And I have muscle memory of her: the medicine-ball weight of her head in the crook of my left arm, the sweet hint of her body lying across me as I rocked her. Half of her irises were sunk below the rim of her lower lids, forced down by the pressure in her head. There was no way to tell for sure what lay behind the gray half-moons of her eyes, what thought or absence of thought. She cried with infrequent, weird bursts that trailed off, like the clatter from a windup toy. I know now, from scores of babies who came after her, that it was a neurogenic cry, an emblem of brain malformation or damage. When I hear something like it now, 27 years later, I know right away how much is wrong that no one can fix.
But she was able to take comfort, my little pea. Her eyelashes were red and sparse, like her hair, and she blinked faster, more ostentatiously it seemed, when she was happy. When I held her, she settled in, turned toward my warmth with hers. Her own heat was so slight, like her hold on the earth.
By CT scan, her brain was grossly abnormal. I remember that her family stopped visiting after her first few days of life, expecting her to die, and that there were plans for institutionalization as the weeks went on. And institutions conjured the image of some Dickensian orphanage, even as late as 1979. I remember wishing, in my unformed, 21-year-old way, that I could adopt her. Someone, I thought, should be able to save a brand-new baby from becoming a forgotten cog in an institutional wheel. Wasn't that a given? I was fresh from the nursing homes I had worked in during my undergraduate days, where spirits in an unknown state of grace or damnation were frozen in hellish, twisted bodies. That setting seemed all wrong for someone with the clean slate of a newborn, someone so recently arrived in this life.
I remember the day I came to work and her incubator was empty, like a lung that has just exhaled.
But that isn't the whole story.
I know that the more experienced nurses on the unit didn't share my soft spot for her. They cared for her with economical movements, the casual grace of expertise, but they turned their inner gaze from her, females of a herd refusing to feed an orphaned runt.
'Why do you hold her all the time?' Karen asked me one evening as I sat with the baby in our accustomed place, the scarred wooden rocker in front of the Isolette. Karen was smiling, teasing me. The little pea and I traced a section of institutional flooring over and over, slow and measured, back and forth. Karen was about 15 years older than I, and she had spent at least 10 of those years in that place, the neurology/neurosurgery unit of a large children's hospital. A few nurses there had desiccated into wasps, penetrating but venomous. Karen wasn't one of them. It was just that she was hundreds of brain-damaged babies, thousands of tragic stories, ahead of me.
'You've seen that baby's CT scan. You know she has about as much brain power as an earthworm,' she said, chuckling.
I could feel the little pea's fire against me, right over my heart, but at the same time, rising on my inner screen like a vision, was the earthworm I had dissected in 10th grade: one nerve running up the length of its body, bifurcating at its head into a simple Y. The Y is its 'brain.' Nothing is much more basic than the brain of an earthworm.
I snorted back a laugh. I'm still not sure if that laugh was salvation or damnation. But I do know that when you take a scalpel to the nervous system of an earthworm, the trick, then as now, is to expose that tender bifurcation without destroying it.
Reprinted from Georgia Review (Summer 2006). Subscriptions: $24/yr. (4 issues) from 12 Gilbert Hall, University of Georgia, Athens, GA 30602; www.uga.edu/garev.