He developed facial tics, and would nervously rub the bridge of his nose until it was raw. He was frightened of change. And as he began to enter puberty, Murphy says, he'd occasionally engage in open masturbation, embarrassing his nurses and teachers.
By then, she was seeing less of David, who lived almost full-time with his family in Conroe. She occasionally visited him there, but most times, they talked by phone.
Though David grew to enjoy being at home in Conroe, he was at first reluctant to leave the hospital for an extended period of time. "How can I tell my mother that I don't want to live at home?" he asked Murphy a few months before his tenth birthday. "I love my parents very much, but I can't tolerate the thought of six months." As if to prove he meant what he said, he paced, threw himself on the floor of his bubble, pounded his fists and screamed and cursed -- all so violently that Murphy was frightened for him.
She tried to comfort him. "You should be with your parents and your school friends," she told him. "A hospital is no place for a boy to grow up."
Still, David was inconsolable. "Why didn't they do something to me before I was old enough to care?" he asked. "When I was three, I wouldn't have cared. When all this mess started, didn't they ever think about or realize that they were dealing with my life? They made decisions without ever thinking about anything except what they wanted to do, not about all this crap that I'm in.
"I am a mouse surrounded by ten cats, and there are no dogs to chase the cats away .... Where do you suppose I could get some legal advice?"
Over the years, the composition of David's medical team changed. One by one, the three original doctors moved to new jobs in different cities; eventually Baylor's Dr. Ralph Feigin and Dr. William Shearer headed the team. (Both declined to be interviewed by the Press.) It was Feigin, Murphy said, who encouraged her to take the meticulous notes from which she constructed her book. By the time David was nine -- three years into Feigin's stay at Baylor -- Feigin pushed to resolve the boy's situation, which he described as "intolerable for everyone."
Since David's birth, his doctors had hoped that his immune deficiency could be corrected with a bone marrow transplant. But an exhaustive search failed to turn up a perfectly matched donor, and research had not progressed to the point that a less-than-perfect match might work.
Murphy recounted a meeting in June 1980, when Feigin conceded that a cure for David was still years away. Nevertheless, the doctor was concerned about "a deterioration in the boy's mental status," as well as the possibility that federal funding for the project would eventually dry up. (Conservatively estimated, the cost of keeping David alive eventually came to somewhere around $1.3 million.)
According to Murphy, Feigin and Shearer attempted to convince the Vetters to remove David from the bubble and place him on a regime of gamma globulin and antibiotics. Basically, the doctors were hoping that David's body -- like those of the twins in Europe -- had miraculously begun to develop an immune system.
Murphy believed the plan was a way to bring David out of the bubble and let him die. Despite her affection for the boy, she thought it was the right thing to do. The Vetters, though, rejected the idea after consulting with the original trio of doctors.
Four years later, even those doctors agreed that something had to be done. Researchers in Boston had made advances in transplanting unmatched bone marrow. Montgomery and the other two original doctors convinced the Vetters that an unmatched bone marrow transplant was a risk worth taking.
The transplant was set for October 21, 1983, precisely a month after David's 12th birthday. The boy told Murphy that he didn't believe the transplant would work, and he seemed ambivalent about his prospects. But he seemed less frightened of death than of the alternative: life outside the bubble. "He was actually afraid that it might work," said Murphy, "and that he wouldn't be able to adjust when he came out."
Against David's wishes, Baylor hired a camera crew to record the procedure. David wanted Murphy to be at his side, and even advised her on what to wear to the transplant, so that she'd look good in the newspaper. His first choice was turquoise, but he settled for a red blouse, a red velvet vest and a red print skirt.
David's older sister, Katherine, donated the marrow, which was treated by doctors in Boston and flown to Houston to be introduced into David's system. In the wee hours of that Friday morning, Texas Children's Hospital was informed that the plane had arrived at the airport. Less than an hour later, Dr. Shearer walked into David's room with a white Styrofoam ice chest. Murphy thought that the precious fluid sloshing inside a plastic bag looked like pink lemonade. The procedure was more like a blood transfusion than an operation. Through the intravenous lines that ran into the bubble, Katherine's bone marrow slowly dripped into David's system.
