Chimeras and Odysseys : Toward Understanding the Technology-Dependent Child

Preserving the lives of children and adults by attaching them for long periods of time to technological devices extends not only the lives of human beings but also the definition of the nature of being human to include human and machine combinations. Yet we as individuals, as professionals, and as a society are unclear about the nature or value of these combinations. We can resort to metaphor naturally to describe technology-dependent children and their families because it is most often by metaphor--by common culturally held images and stories--that we collectively understand the new and perplexing, (1) especially when it forces new visions of things so important and universal as children and life itself. Children connected to ventilators evoke the image of chimeric creatures: they are a combination of two different species. I contend that it is this combination of two historically unrelated conceptual domains--the human and the mechanical--that perplexes us and confuses our senses of identity and value of these human-machine hybrids. The Chimera of myth was a fearful monster breathing fire, with the head of a lion, the body of a goat, and the tail of a dragon. Visualize for a moment a child: a quadriplegic, ventilator-dependent child ... head of the lion, the (partially or completely useless) body of the goat, and--the tail of the dragon--the real technological tether, the tubes connecting the child to the ventilator and its alarm devices, emitting "infernal fire." Anyone who has tried to replace a tracheotomy tube in a struggling child who is totally dependent on a ventilator can identify all the elements. It is truly terrifying to see the child struggle as the seconds of breathlessness pass while the caretaker desperately but meticulously tries to insert a tube into a secretion-filled trachea--the "gaping throat." We really have no clear image of who or what a technology-dependent child is, or who we are as professionals caring for them. Like the Chimera, the new beings, humans attached to and dependent upon machines, have created disarray in our ways of thinking. And like Iobates, whose kingdom the Chimera terrorized, we are seeking a decisive and heroic way to contain that confusion. We, both professionals and public, seek to recognize and categorize the novel and unfamiliar; indeed, the very art of medical diagnosis is the recognition of groups of similar or related findings. We don't really know yet what prior experiences technology-dependent people best match or what group to put them into. We seek conceptualizations and meanings for a novel category of persons. It is difficult to construct an ethical system for something or someone for which or whom we don't understand the meaning or value. Until we have a clearer idea of what technology-dependent people are and what they mean to us collectively and as professionals, we will be unable to answer clearly even the basic operational questions that arise in and from their care and presence. Is a technology-dependent child a child connected to a machine, with all the endearing, dependent, hopeful characteristics of childhood? For most of us this is the most compelling view. But that view is constantly strained by the necessity to tend to the machine, lest the child perish. Thus we often find ourselves behaving as if the beast before us were a machine to which a child is affixed. If the machine and its performance are the critical focus of concern, a device originally used as a means becomes an end in itself. Is the child-machine combination a being in its own right, or just a stage in a medically engineered metamorphosis--a cocoon from which we wait hopefully for the real, intact child to emerge? Or is it an arrested metamorphosis, from which the child can go neither forward nor backward, but which commands endless attention in some sort of ensnaring connection with those who must watch and care for it? …