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September 13, 1985

Sudden Intimacies

JAMA. 1985;254(10):1361. doi:10.1001/jama.1985.03360100115026

For over a year this infant had spent more of his time in the hospital than out. He had a form of histiocytosis X with immunodeficiency, but no one truly knew the prognosis. We had all hoped for the best: that he would slowly outgrow his disease while we treated the interminable complications as they arose. He was a darling boy, with a round face, a willing smile, his father's tendency to crinkle up his nose, and blond hair that stood up vertically on his head. He was readmitted to the hospital because his fever had returned and the eczematous rash had flared up. None of us thought that he would die. But, he developed a right-sided facial palsy, began to choke on his secretions, and had to be intubated. Seizures followed, with coma and eventual brain death due to uncertain causes.

One week before his death, the boy's father