Teddy's Tiny World

Teddy DeVita, 13, seems like a normal teenager. Darkly handsome with brown hair and twinkling eyes, he sings folk songs, plays the guitar, performs card tricks and is fascinated by the Old West. But Teddy is no ordinary youngster. His world consists largely of a small (8% ft. by 10 ft.), near-sterile chamber at the National Cancer Institute (NCI) in Bethesda, Md., where he has lived in isolation for the past 31/2 years.

The youngster is the victim of severe aplastic anemia, a rare, puzzling disease in which the bone marrow loses its ability to produce three essential components of blood: the white cells that fight infection, the red cells that transport oxygen to the tissues, and platelets for clotting. Only by confining Teddy to the superclean room and giving him repeated transfusions have doctors managed to keep him alive.

Teddy's living quarters--one of eight "laminar air flow rooms" set up by the NCI for infection-prone patients --is kept free of potentially harmful viruses and bacteria by a system that forces clean air into the room through filters and out through an open doorway; germs cannot make their way past the outward-flowing air. Only people dressed in specially designed sterile outfits are allowed into the room.

The young patient talks to his visitors--including his parents and a teacher who comes to help him with school-work every afternoon--through the open doorway or a transparent plastic barrier; this wall has two sleeve-and-glove arrangements that allow people to reach into the room and play checkers or cards with Teddy without contaminating him. Books, magazines and games--sterilized by steam or gases --are passed into the room through the doorway. Food, too, must be specially prepared. Even Teddy's favorite fare, pizza, is so thoroughly baked that it is practically unrecognizable.

Aplastic anemia strikes about 1,000 people in the U.S. each year and kills 50% to 80% of them within a matter of months. Doctors do not know the ailment's causes; genetic factors, radiation, viruses and such chemicals as benzines have all been implicated. But whenever anyone survives, it is usually because his bone marrow suddenly--and mysteriously--begins working again. Teddy, who is the son of a prominent cancer specialist, Dr. Vincent DeVita Jr., director of the division of cancer treatment at NCI, has shown little improvement. His marrow remains almost as inactive today as it was on Sept. 15, 1972, when he first entered his cubicle.

Doctors' Strategy. Though aplastic anemia is not a form of cancer, doctors at NCI were particularly interested in Teddy's case for what it might teach them about treating patients with leukemia and other types of cancer who develop aplastic anemia because of their anticancer therapy. The strategy of Teddy's doctors was to give him transfusions of red blood cells and platelets to keep him alive, plus hormones and other drugs to stimulate bone-marrow activity (it is impractical to inject patients regularly with normal white cells both because white cells ordinarily live only a short time and because the patient quickly develops toxic reactions). Teddy, it was hoped, would be protected from infection by the superclean room until his bone marrow revived. Judging from earlier cases, the doctors optimistically expected the case to be resolved in a matter of months, a year at the outside. The theory, says the NCI's pediatric branch chief, Dr. Arthur Levine, was: "Teddy would either recover or die."

Teddy has done neither. Every sign of possible recovery has been quickly followed by a setback. To make matters worse, the chances of a successful bone-marrow transplant, a technique employed sometimes in aplastic anemia and occasionally in leukemia cases, faded when the likeliest donor, Teddy's sister Elizabeth, 9, turned out to have a distinctly different marrow type.

At times Teddy's spirits sag. He was especially distressed by anonymous allegations that he had been selected for the costly treatment (about $300 a day) because of his father's position. (These allegations were investigated and dismissed by a medical board of the National Institutes of Health, which operates the Bethesda center.) But most of the time Teddy is remarkably chipper. He likes to read mysteries, watches television, has a citizens' band radio and scans the distant skyline of Washington with binoculars from his sealed 13th-floor window. Says Psychiatrist Stephen Hersh: "He's an emotionally healthy and well-adjusted person."

One of Teddy's greatest boons is a battery-powered, astronaut-type pressure suit with its own portable air-filtration system. Donning it, he is able to venture outdoors for several hours at a time. Though embarrassed at first by the suit's Buck Rogers look, Sci-Fi Buff

Teddy attended a recent Star Trek convention in Washington and was delighted when people mistook him for an imaginatively attired "Trekkie."

Despite lack of significant progress so far, his doctors say Teddy may recover. Insists Boston's Dr. David Nathan, an expert on aplastic anemia and a consultant in Teddy's case: "We're simply going to keep on with this job." Teddy remains cautiously optimistic; he has repeatedly said that he would walk out of confinement to virtually certain death if he thought there was no hope. There is nothing to stop him but a curtain of air--and his will to survive.

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