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6. A Fighter, Doing God’s Will: Technologically Tethered, Retaining Fluids, on Steroids, Sedated, and Four Years Old
- Indiana University Press
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BILLY RICHARDSON It is commonly thought that health care providers experience their patients ’ deaths as a failure, a defeat in the battle to provide health and life. Seeking to inform the healer’s art, William F. May writes of the metaphoric parallels between medicine and war: The metaphor of war dominates the modern, popular understanding of disease and determines in countless ways the medical response. We see germs, viruses, bacteria, and cancers as invaders that break the territorial integrity of the body; they seize the bridgeheads and, like an occupying army, threaten to spread, dominate, and destroy the whole. . . . Further, the language of war describes the mounting counterattack. We refer to the armamentarium of drugs, the bombardment of tumors with radioactive substances, to say nothing of wielding the hand-held weaponry of burning iron and knife.1 The images of battle and war are particularly apt in an intensive care unit (ICU), in which health care providers often commit themselves to an allout attack against disease and death. Yet when four-year-old Billy Richardson died in the spring of 1998, house staff in Baylin’s ICU breathed a collective sigh of relief. For them, and for this intrepid patient, the war was over. Billy had come to Baylin to undergo a bone marrow transplantation (BMT) procedure to treat his Hurler syndrome, a rare, inherited metabolic disorder caused by an enzyme defect that produces an abnormal accumulation of mucopolysaccharides in the body’s tissues. Affected children develop cardiac abnormalities; umbilical hernias; skeletal deformities; and enlarged tongues, livers, and spleens. Physical and mental growth are imSIX A Fighter, Doing God’s Will: Technologically Tethered, Retaining Fluids, on Steroids, Sedated, and Four Years Old paired, and children acquire features that give the condition its former name of gargoylism. Many children with Hurler syndrome do not live more than two years, and they often die from pneumonia or cardiac arrest. Billy had several of these conditions and more, requiring multiple hospitalizations before his arrival at Baylin the previous autumn. At six weeks of age, he stopped breathing, and his father administered cardiopulmonary resuscitation (CPR) by taking directions over the phone from an emergency medical service. In 1994, he developed hydrocephalus—an excess of cerebrospinal fluid in the skull—requiring a shunt for drainage. In 1995, he had an umbilical hernia, and a year later, he acquired pneumonia. Billy’s heart was weak, and his renal insufficiency required regular dialysis. He was developmentally delayed, able to sit up by himself but not walk. Billy communicated with some single words, signs, and babbles. His diet consisted of pureed and baby foods, and rice milk. Billy’s allogeneic BMT at Baylin was his second. The first, unsuccessful attempt was carried out in another region of the country when he was thirteen months old, and his parents came to Baylin after several other hospitals declined their request for a second try. Aware that the procedure was risky and that the chances of success were remote, Baylin’s oncologists nonetheless agreed to the Richardsons’ request. The hope was that new marrow would provide a continuing source of the enzyme that Billy lacked. That treatment would not cure Billy, but it would improve his quality of life by addressing some of the metabolic issues caused by his enzyme deficiency . BMT patients do not necessarily require intensive care, but Billy required mechanical ventilation soon after he was irradiated and injected with new marrow. It was in Baylin’s ICU that I met and interviewed Michelle Richardson, Billy’s mother; joined family discussions about Billy’s condition; and observed meetings among care providers and counselors about how to approach the Richardsons regarding Billy’s ongoing and increasingly futile treatment. Only slowly did I sort through the complexities surrounding Billy’s case. What materialized is an example of a child’s basic interests being held hostage directly by parental indecision and indirectly by medical professionals’ respect for family privacy in a situation complicated by medical ambiguity and the need for scientific research. Billy’s case was further complicated by the fact that his parents acted on religious principles , requiring professionals to grapple with the family’s piety as it informed their decision making. That requirement is no small challenge in modern medical (or other) settings in which it is assumed that religion plays a special role in persons’ identity and can lend special gravity to their deliberations. Billy’s body was socially constructed according to different perspectives, in which religious, medical, and...