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Ted DeVita (1962 – May 27, 1980) suffered from severe aplastic anemia requiring him to live in a sterile hospital room for a significant portion of his life – eight and a half years.
His story, along with that of Texas patient David Vetter, was used to create the 1976 made-for-TV movie The Boy in the Plastic Bubble. In the film, John Travolta played "Tod," a teenaged boy who lived in a sterile bubble due to illness. Ted was 14 when the film, unauthorized by his family, was released. In 2004, the story of Ted's life, illness, death, and the lasting impact of these events on his family was examined in a memoir by his younger sister, Elizabeth DeVita-Raeburn, entitled The Empty Room: Surviving the Loss of a Brother or Sister at Any Age.
Ted DeVita was the son of NIH oncologist and researcher Vincent T. DeVita, Jr., MD, who diagnosed his son's illness in 1972. Severe aplastic anemia is a rare disease in which the body is suddenly unable to produce new blood cells and platelets. Its victims have no effective immune system and must be protected from infection. Ted was admitted to the National Institute of Health Clinical Center. While scientists and physicians tried all known treatments for his condition, Ted was isolated in Building 10, in a "laminar airflow room." This specialized room on "13-East" had been created in 1969 to protect leukemia patients whose immune systems had been compromised by chemotherapy. Physicians hoped the sterile room and frequent blood transfusions would sustain him until he recovered spontaneously or an effective treatment was found.
The "laminar airflow room" gave Ted a living space the size of a normal bedroom. He was able to walk around and participate in many normal activities, but could be touched only with gloved hands. He lived surrounded by plastic sheeting containing a door-sized space through which sterilized objects, including food, clothing, and books, and occasionally doctors and nurses, could pass in and out. He was surrounded by a "curtain" of air, a steady outflow of positive air pressure to expel potential pathogens.
His family recalls Ted as a bright and curious boy who grew to be a strong-willed teenager. Ted's emotional adjustment to the confinement and isolation was difficult. From a later review of medical notes, his younger sister, Elizabeth DeVita-Raeburn, learned the staff saw Ted as alternately "hostile, angry, and cheery." Especially during the first year, he indulged in tantrums, throwing things out of the sterile area in his room, and creating a cavity in the wall to hide thousands of his hated pills. On the few occasions Ted left his room, he was enclosed in a spacesuit and helmet, with an air pump that expelled pathogens. The suit drew so much attention that he rarely chose to leave. His sister remembers that the only time Ted wasn’t stared at was at a Star Trek convention.
Ted DeVita died in 1980—his death was not primarily due to aplastic anemia, but was caused by iron overload from too many transfusions. Treatment for Ted's disease is much more successful today, with a cure rate of up to 80 percent of aplastic anemia patients. Bone marrow transplants, transfusions, iron chelating regimens, and brief periods in positive airflow rooms are used in treating these patients.
- DeVita-Raeburn, Elizabeth. "The Empty Room: Surviving the Loss of a Brother or Sister at Any Age." Scribner, New York, 2004. ISBN 0-7432-0151-5.
- Pat McNees. "The Boy in the Plastic Bubble." NIH Clinical Center News, August 2004, in this issue: http://www.cc.nih.gov/about/news/newsletter/2004/aug04/index.shtml (illustrated with photos)