Biotechnology and Culture: Bodies, Anxieties, Ethics

By Paul E. Brodwin | Go to book overview

Chapter 9
The Ventilator/Baby as Cyborg
A Case Study in Technology and Medical Ethics

ROBERT M. NELSON


INTRODUCING MICHAEL

I first met Michael when he was admitted to the pediatric intensive care unit as a transition to our home ventilation program. The diagnosis was nemaline rod myopathy—a rare and slowly progressive neuromuscular disease that renders a person immobile (Iannacone and Guilfoile 30–32; Connolly, Roland, and Hill 285–88). Unable to move and unable to breathe, Michael had undergone a tracheostomy procedure a month earlier so that his airway was secure and he could be ventilated more easily. A tube had also been placed into his stomach through his abdominal wall so that he could be fed without placing a temporary feeding tube through his nose. Michael was then five and a half months old. His mother appeared tense and protective, yet no more so than other parents in similar circumstances. Michael stayed in the intensive care unit for ten days. After being switched to our “low-tech” home ventilator, he was transferred out of the intensive care unit to the ward of the hospital where all our chronic home ventilator patients are admitted. All that remained was to train the family and discharge Michael home.

Three and a half months later, I received a telephone call from the physician responsible for taking care of Michael. At the time, I was on call for ethics consultations and he was seeking our help in trying to resolve an apparent impasse in discharging Michael. I knew there were problems, since part of my clinical responsibilities also involved covering this particular ward off and on for a week at a time. There were two broad areas of potential conflict. The first issue was trying to decide where Michael should stay after discharge. The options included his mother’s home, the home of a relative, or the home of a foster parent skilled in taking care of socalled technology-dependent children.1 At his mother’s request, plans had been developed for temporary foster placement. The second issue was his mother’s continued insistence that she had the right to take Michael off the ventilator and let him die. It was the fear that this right might be threatened that caused her to scuttle plans for foster placement and precipitate

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