โ Scribed by Marion, Robert W.
No coin nor oath required. For personal study only.
Telling parents that their child is affected with a genetic disease is undoubtedly the worst part of our job. Often painful and always distressing, it's unfortunately something we cannot avoid: so many of the conditions with which we clinical geneticists deal have such terrible prognoses. In these situations, we are forced to act as both judge and jury. Because he is affected with a disorder, we have found the child guilty, and it's our role to condemn him to death and his family to a life of grief. And, in most cases, once the diagnosis has been confirmed and the news delivered, we're helpless to do anything to avert the predetermined outcome. We can't fix the child, and we often can't significantly alter the course of his illness. At best, in an attempt to make his existence acceptable, all we can really hope to do is orchestrate some of the events of the child's life.
That's what happened the first time I saw the Sweeneys.
It was the Friday before Christmas, and the Garwood Children's Rehabilitation Center had that feeling of forced festivity that tends to envelop children's hospitals that time of year. It seemed as if every last inch of the place was decorated with tinsel and blinking lights, garishly-dressed evergreens, and giant menorahs. In spite of all these carefully-arranged, cheerful decorations, a feeling of helplessness and hopelessness still hung in the air.
Amy McDonald, a second year fellow in genetics, and I were standing in the hallway talking with Benjamin Sontag, the Executive Director of Garwood, when we first saw the Sweeneys. Mother, father, and son were rapidly walking down the hall toward the outpatient department. From my position, I could only see the boy in profile; Amy was able to see him straight on. We saw the child for only a few seconds as, clutching the hands of his parents for support, he walked past us. But that brief glimpse of the boy was enough. His large head, his
๐ SIMILAR VOLUMES
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