Little Pea

Where medicine fails, a nurse's compassion thrives

| Utne Reader March / April 2007

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.

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