I whisper your name (ayradyss) wrote,
I whisper your name

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April already...

Where has the time gone? I haven't updated in days, and there were things I wanted to update about. But tonight, O Best Beloved, I lack the concentration to formalize a journal entry in my head. I am writing from my home away from home tonight, from the bedroom that comprises the whole of my habitation here at school, away from home and the ones I love.
My head is already spawning a headache.
There is a couch here, a loveseat rather, just enough to curl up on; a twin bed, a bookshelf, a cabinet and a brightly-coloured chest of drawers. And my laptop, my lamp, my clothes and the large soft blanket that I only use here. It is gray, with wolves.

I saw Sturge-Weber syndrome and status epilepticus and cri du chat and two babies who might have chromosomal abnormalities. I slept and played and cleaned and mopped and discovered the credit card was overdrafted because NBME sucks. I had a moment of revelation - it sounds awful, O Best Beloved, but if Angel and I have children of normal intelligence, I won't know what to do with them. My expectations are so very very high.

They are young, like so many parents, early-to-mid-twenties, holding a baby whose body and face are half-to-three-quarters covered in hemangiomas. The girl-child, a baby so beautiful despite the crimson stain of her birthmarks - hemangiomas are also known as port-wine stains, to the general public (see a picture at sturge-weber.com here)- is two months old. She has Sturge-Weber Syndrome. The delicate fragile matter that lines the intricate folds of her brain, the pia mater overlying her sulci and gyri, is engorged with these vascular tumours, these hemangiomas. She has bilateral disease, worse than any child Dr. W has ever had before. She will probably have seizures, probably uncontrollably. She may walk and speak and be only mildly retarded. She may never walk or speak. Her parents have gotten in touch with the SWS foundation. They're going to the annual meeting. They are overwhelmed, shell-shocked.
Her father, holding his infant daughter in his arms with great tenderness and care, looks at the doctor and the team of white shadows behind him. "We've been talking to people, families with Sturge-Weber kids," he says in a deferential voice, almost an anecdote. "It's..." A shake of his head, a gentle jostling as the baby snuffles in her sleep. "I hear them say that their 21-year-old child just learned to ride a bike. And I can't...I just can't see that as something to be proud of. Not yet." I want to hug him. I want to fix this beautiful little girl, this baby who turns a mottled indigo when she cries, triggering the instinctive need to begin resuscitation. I want to heal her.

There is a chromosomal deletion syndrome in which the tip of the short end of chromosome 5 is clipped off. They call it cri du chat, and the textbook will say to you that these children have a characteristic high-pitched, catlike cry. We all nodded, wrote it down in the notes: cri du chat: 5p-; characteristic cry, microcephaly, micrognathia, simian crease, slow growth, low muscle tone. That's nice.
She has a broad-based nose, oddly-set eyes, low ears. And she is of the fragile breed of children, skin so fine and thin and translucent that one can see the tracery of veinwork beneath it; hair a wispy and curled blonde. She is a year old, her mother says, a woman who makes jeans and a college sweatshirt look like camouflage on a starlet, something glamourous about her beneath the motherhood. I would have said six months, maybe eight. She is compliant with our exam - we are here to see if she might have had seizures - but begins to get antsy as babies do. She opens her mouth to complain, and vocalizes with a kitten's mewling cries. I understand, in that moment. Now I understand. I will never forget this beautiful child, nor the syndrome that now bears her face.

There were five patients on the service late Friday afternoon, when we went over to a different hospital to look over the dysmorphic - some might say malformed - features of an infant boy. Our staff is a geneticist and a neurologist, so much fun. We talked about syndromes, looked up the features, tried to decide what went wrong. We don't know.
L was convinced on the way back to the hospital - the People Mover was working - that five patients on the service means there's no reason for student rounding. I have spent my weekend lounging about and mopping the kitchen. A good weekend. And tomorrow is a new staff.
It's April 4th. Palm Sunday. Another year almost done.

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