Bursting the Bubble
Bursting the Bubble"Bubble Boy" David Vetter was hardly the happy, well-adjusted child portrayed in the media. Thirteen years after his death, his friend Mary Murphy is fighting to tell his story.BY STEVE MCVICKER
As the "Bubble Boy," David Vetter was famous across the U.S. Newspapers, TV shows and magazines portrayed him as a happy, well-adjusted child who struggled cheerfully against the immune deficiency that condemned him to a life inside a plastic bubble.
But according to a person David called his best friend, the boy wasn't struggling cheerfully. In 1978, although he was not quite eight years old, David had realized his life would be lonely, dull and short. His helplessness enraged him. Before he was born, his body had been donated to science.
"Why am I so angry all the time?" he asked psychologist Mary Ada Murphy one summer evening. As he sat in his plastic isolation chamber on the third floor of Texas Children's Hospital, he could see Fannin Street from the room's window. But he couldn't touch that outside world, or participate in it.
"Whatever I do depends on what somebody else decides I do," he said. "Why school? Why did you make me learn to read? What good will it do? I won't ever be able to do anything anyway. So why? You tell me why."
"I can't say why," replied Murphy. Since David was three, she'd spent countless hours of her personal time with him.
David was angry, and he worried that he was going crazy. Murphy explained to him that anger was a natural reaction to his situation. As usual, she tried to help him cope with an unbearable situation -- a life much different than the one portrayed in the media.
Years later, Murphy said, David asked her to set the record straight, to write a realistic account of his life. In 1995, she planned to publish just such a book: Was It Worth It? The True Story of David the Bubble Boy. But shortly before her book was to be released, David's parents and Baylor College of Medicine officials sent strongly worded letters to the publishing company -- WRS, a small outfit in Waco -- withdrawing the written permission they'd given Murphy to write about David, questioning her facts and hinting at a lawsuit. WRS backed down, and the book never appeared.
As told by Murphy, David's story is not of triumph over adversity, but of the human cost of medicine's headlong rush toward the new. Even 13 years after his death -- when the ethical debate has moved on to cloning and genetic screening -- his story still serves as a cautionary tale.
And it continues to divide the opinions of people who cared for him. One member of the group that treated David asked not to be quoted by name for fear that Mary Murphy's enemies would retaliate. "It is important for you to understand that there is a powerful hierarchy at Texas Children's Hospital," said the former hospital employee. "And they are very angry at Mary. And they do not want to be reminded in any way, shape or form that this may have been a bad decision."
In 1970, Carol Ann and David Vetter Jr. had their first son -- also named David Joseph Vetter. Six months later, the baby died of Severe Combined Immune Deficiency Syndrome. He'd been born with a defect in his thymus, a ductless glandlike structure crucial to developing disease resistance. He was at the mercy of any passing germ.
A trio of doctors from Baylor College of Medicine told the Vetters that the defect might have been caused by a mutant gene. If so, the probability that another of their children would bear the disease was 10,000 to 1. But the doctors also explained that the defect might be carried on one of the mother's X chromosomes. If that was the case, and the Vetters had another son, the odds were 50-50 that he, too, would be afflicted by SCIDS.
The doctors -- John Montgomery, Mary Ann South and Raphael Wilson -- told the Vetters that should they choose to have another child, and should that child also have SCIDS, the newborn could be placed in an almost completely sterile isolator that would protect him from disease until a cure was found -- which, the doctors thought, was only a matter of time. The project would be financed with federal research grants.
The Vetters were predisposed to the doctors' plan: They were anxious to have another child, especially a son to carry on the family name. As Catholics, they may have been especially swayed by Dr. Wilson, a scientist who studied germ-free environments and was also a brother in the Order of the Holy Cross. In Europe, Wilson had been involved in a similar project: Two retarded twins had been successfully treated in sterile isolation. Remarkably, the twins' immune systems developed to the point that they could be removed from their isolators before they turned three.
There was little discussion -- and certainly no public discussion -- of what would happen if no cure for SCIDS appeared soon, or of how long a child could or should be kept in such isolation. The medical technology existed. The ethical questions would come later.
As was later reported in People magazine, the Vetters' second David Joseph -- the one who would become famous -- was delivered by a cesarean section on September 21, 1971. The room at St. Luke's Episcopal Hospital had been cleaned five times in an attempt to make it as germ-free as possible. No more than ten seconds after David was removed from Carol Ann's womb, he was placed inside the sterile plastic isolator that would be his home.
Prior to the delivery, the Vetters had arranged for a priest to be on hand to baptize their son after he'd been placed inside the bubble. Like almost everything else David would touch during the next 12 years, the holy water was sterilized.
David was transferred to a room at Texas Children's Hospital, which was then a part of St. Luke's. His bubble, made of transparent polyvinyl chloride film, sat on a plain wooden table next to a window.
Attached to the "crib bubble" was a small "supply bubble," which contained items such as diapers, clothes, vitamins, food, washcloths, medicine and water. Sterilizing such supplies was no simple task. First, labels and glue were removed from bottles and jars containing pre-sterilized food. Then those and other necessities were loaded into perforated cylinders, which were placed in chambers filled with ethylene oxide gas, at a temperature of 140 degrees Fahrenheit, for four hours. Afterward, the containers had to be aerated for one to seven days before they could enter the bubble.
The walls of the bubble were fitted with heavy-duty rubber gloves so that his parents and medical personnel could handle David. Using those gloves, they diapered and fed the baby, and hugged him as best they could.
Mary Murphy's office was only two doors away from David's room. She was working as a psychological associate at Baylor College of Medicine's Center for Developmental Pediatrics, and she watched as a constant parade of visitors -- princes and royalty, even Beverly Sills -- trooped past her door, intent on seeing David; he served as a kind of tourist attraction for VIPs. It was said that Hermann Hospital had a helicopter, and Texas Children's had the Bubble Boy.
Murphy passed by David's room many times each day, but she never looked in. The project appalled her, and she wanted nothing to do with it.
Murphy had come to psychology late in life. As a college student during World War II, she'd studied to be a mechanical engineer. But instead of pursuing that career, she married and moved to Texas. After her husband left her, she and her infant son found themselves alone in Houston.
"I had a baby, a penny and a potato," laughs Murphy, a matronly but attractive woman with short white hair. To support her son and herself, she went to work as a waitress. Murphy remarried, and in the late 1950s, she enrolled part-time at the University of Houston. She graduated in 1967, and earned her master's degree two years later. While an instructor at Baylor, she began her doctoral work. In her office at Texas Children's, she struggled to complete her dissertation, examining the stresses that beset families of children with birth defects.
By the fall of 1974, David was no longer a constant presence outside Murphy's door. A plastic bubble had been set up in the Vetters' home in Conroe, and the child could spend two to three weeks at a time there. Ironically, Murphy met David not at the hospital, but in his home.
Her mentor, Dr. Barry Molish, was working on an article about David's psychosocial development, and asked Murphy to assist him by giving the child psychological and intelligence tests. She agreed reluctantly, and on the day after David's third birthday, she and Molish drove to Conroe in the pouring rain.
To Murphy's surprise, she was smitten with David, a handsome, dark-complected boy with a thick mop of black hair and dark, wide-spaced eyes. She wondered how the boy could survive in such a confined space. The isolator bubbles were periodically replaced with larger models as David grew, but even the largest was tiny: six feet by two feet by four and a half feet. (Later, a sterile "playroom" would be attached.)
Murphy could barely hear the boy speak over the roar of the bubble's blower motors, and she asked to turn them off. David laughed. "He said I was dumb," she remembers, "and didn't I know that the bubble would deflate if the motors were turned off?"
In spite of the noise, Murphy administered tests. Asked to define a tree, David responded that it was a brown rectangle with a green oval on top. She was stunned, amazed that a three-year-old would know so much about geometry but so little about the stuff of daily life.
No, she told David, the green part was made of leaves. He replied that she was totally wrong.
To prove her point, she fetched her umbrella and went outside. As David watched through a window, she broke a small limb off a tree and brought it inside for him to examine through the plastic. "You never saw so much astonishment in your life," she remembered. She left the Vetter home that night feeling that there was much she could teach David -- but she had no intention of doing so.
A few days later, Murphy's boss informed her that David was back at Texas Children's, and that his mother and the hospital staff were having trouble with him. Specifically, a photographer from United Press International was standing by to snap the first pictures of David as he entered his newly constructed playroom. Roughly 11 feet long, six and a half feet wide and eight feet tall, the sterile space marked a huge addition to David's world. But to the embarrassment of the medical team, he refused to crawl through the stainless steel tubing that connected his bubble to its new addition. Since Murphy and David had gotten along so well, David's mother suggested that Murphy might help coax David into the play area. Murphy agreed to try -- but only after she finished her other duties for that afternoon.
Around 4:30, she walked the short distance from her offie to David's quarters, confident that she could remedy the situation in no time flat.
David seemed glad to see Murphy, whom he remembered as "the lady with the leaf." Even so, he rebuffed her attempts to get him into the playroom. After a couple of hours, she gave up for the day.
As she left, David looked in her eyes. "Lady," he said, "you will be back."He was right. By the following day, Murphy had decided that trying to talk David into the playroom was useless. Instead, she borrowed a bowl of goldfish from the desk of a third-floor secretary, and placed the bowl on the far side of the playroom. David was excited by the fish, and tried to convince Murphy to bring them next to his crib. She refused.
The strategy worked. Anxious to examine the fish more closely, David crawled through the tube, down the three-stepped ladder and into the playroom. UPI got its photographs, the medical team got its good publicity and Murphy was invited to help in David's day-to-day care.
Privately, nurses complained to her that the playroom incident was minor compared to other problems they were beginning to have with the child. "They wanted him to behave and be compliant," said Murphy. Eventually, she became known as "the fire extinguisher": the person to call when David was in emotional crisis.
Three and a half years after David's birth, Texas Children's Hospital finally discussed the ethics of keeping a child isolated indefinitely. Now many hospitals have ethics committees that routinely consider complicated decisions. But in the '70s, such groups were rare.
On February 26, 1975, about 30 doctors, theologians and other concerned parties -- including Mary Murphy -- gathered in the hospital's conference room. All the chairs were filled, and people stood in the back of the room. Dr. Wilson, the project's scientific director, gave a synopsis of David's history, then opened the session for questions.
The most pointed of those questions came from Dr. Robert Main, another chaplain. "You're in the honeymoon stage of treating him now," said Main, who had examined David. "One day he will take a look at himself and decide he doesn't want to be in there till he gets to be 15 years of age."
Nonetheless, Dr. Montgomery, another of David's original doctors, brought the meeting to an upbeat close. Under similar circumstances, he said, he would start this project again with another child.
"How many more?" someone asked."Until I determined that there was no more information to be gained by such a thing," Montgomery replied, "or if the outcome was certain."
The Reverend Raymond J. Lawrence, the chaplain of Texas Children's, had convened the meeting, but he was disappointed by its results. The real ethical issues, he says, were never discussed.
"The great scandal of the Bubble Boy was that he was conceived for the bubble," says Lawrence, now director of the department of pastoral care at the Presbyterian Hospital in New York City. "The team that did this didn't think through this very well. They didn't consider what would happen if they didn't find an immediate cure. They operated on the assumption that you could live to be 80 years old in a bubble, and that would be unfortunate but okay."
In the years since, Lawrence's outrage has not abated. He continues to maintain that the three original doctors convinced David's parents to conceive him because they wanted a test subject for their studies of immunology. The doctors flatly deny the charge.
No other ethical conferences on the subject were ever convened. And when contacted recently, Dr. Montgomery stood firmly by the decision to place David in the bubble. "At the time, we were encouraged by everything we knew," he says. "If people didn't take chances, none of us would be here. Columbus would have stayed in Spain and would have been selling tortillas, because he was warned he would sail off the edge of the earth."
Mary Murphy didn't have a lot of free time to spend with David. During the day, her job required her to evaluate other kids at the hospital's developmental center; at night, she needed to work on her doctoral thesis.
She says David offered a bargain: If she would work on her dissertation in his room at the hospital every other evening, including Saturdays, he would promise not to talk.
As Murphy worked on her dissertation, David spent his time watching television and, later, doing his homework. (He had tutors, and attended an elementary school class in Conroe by telephone hookup.) He showed a flair for math, but rarely read for pleasure, a fact that disappointed Murphy. She'd hoped that books would provide him an escape from the bubble.
Instead, over the years, his sense of hopelessness increased. "Even though David was only five," wrote Murphy, "he recognized his difference and dreaded what the future held -- limited choices, feelings of alienation and an increased need to be polite and compliant so as not to reveal his anger."
Most of the time, David lived deep within himself. "He was always used to being very polite," she remembered. It took her a long time to tell when he was saying what he meant, and when he was saying what she wanted him to say. "That is, I guess, one of the things that kept me uncomfortable," she admitted. "I sensed he was being excruciatingly polite sometimes when he didn't really want to be. Most kids that age don't have that kind of façade. They don't bother."
Sometimes, though, David revealed his inner turmoil -- though at great cost to himself and the people who cared for him. Given the news that Dr. Wilson had a heart attack and was in intensive care, he smeared excrement all over the inside of the bubble; hospital workers spent three days cleaning the mess. Murphy theorized that David's reaction betrayed his deep fear of abandonment: Wilson's heart attack was one more piece of evidence that people would leave him, and that he was powerless to follow.
Other fears manifested themselves in recurring dreams. In one, David was attacked by thousands of spiders. In another -- which disturbed him even more -- the King of Germs dispatched thousands of his wives to invade the bubble. David was able to kill the wives, but the king simply married more to send after him.
"I don't know if it's a bad dream or if they're really pouncing on me," he told Murphy. "Maybe I'm crazy. Maybe I'm losing my mind."
Murphy tried to turn the dreams into games and think of ways he could kill his dream world enemies. Though he learned to cope with the nightmares, she says the fear of insanity plagued him from then on.
In 1977, NASA developed for David what was known as the Mobile Biologistical Isolation System. Basically, it was a $50,000 space suit that would allow David to venture outside the bubble. That July, Murphy joined the crowd in David's room: David's parents, NASA engineers and hospital staff, all gathered to see his first adventure in the suit. A camera crew was on hand to record the event.
To get into the suit, David had to crawl through an eight-foot tunnel that connected the suit to the bubble. Every movement was scheduled, but as the countdown began, Murphy says David asked her to hold him with the gloves that extended into the bubble. He wanted to be as far from the space suit as possible.
"I don't believe this," he said. "Mary, can you believe this? Look at that thing at the end of the tunnel. Now that's what I'm afraid of. Germs could be in there."
When the time came for David to crawl into the tunnel, he balked, and said he needed a few more minutes. After those minutes passed, he repeated his request -- and after those minutes, asked yet again for a few more. Finally, after the camera crew left the room, David entered the tunnel, pathetic and trembling. At one point, he got his head stuck in the suit and let out a bloodcurdling scream.
But once in the suit, he discovered it wasn't so bad. He held his gloved hands in front of his faceplate, grinned from ear to ear and said, "I like it." Never before had he taken more than six steps in any direction. But with his mobile support system, he was able that day to travel about 30 feet down the hallway, where he got a cup of ice and handed it to a nurse. It was the first time he'd ever given something to another person.
Though David seemed excited by the excursion, he voiced reservations about the suit before each of his six subsequent outings. When he outgrew the suit, it was replaced -- but he never wore the replacement.
Years later, when David saw a videotape of the made-for-TV movie loosely based on his life, he was most amused by the movie's treatment of the space suit. In The Boy in the Plastic Bubble, John Travolta played a 17-year-old boy who'd lived his entire life in sterile isolation. David laughed at the idea that his character could simply wear the space suit back into the isolator without contaminating the bubble.
In the grand tradition of made-for-TV movies, The Boy in the Plastic Bubble ended on an upbeat note: Travolta, without consulting anyone, simply decided to walk out of the bubble, join his buxom girlfriend on horseback and ride off into the sunset -- presumably to a good time and a certain death.
Certainly, the movie was a long way from realism. But unlike the press, Hollywood at least recognized that David's situation could not and should not go on indefinitely.
Newspapers and TV revealed no such shreds of grimness. In September 1977, the Houston Post reported cheerfully that "a sixth birthday is extra special for most boys and David's will be no exception." The article maintained that David "continues to thrive and develop at above-average rates." To the outside world, David was just a happy, healthy child, miraculously unscathed by the sterility of his life.
Reality was less pleasant. "The summer before David's eighth birthday marked the beginning of the end," Murphy wrote. "Painfully aware of being different and not belonging to a peer group, he inevitably concluded, 'Let's face it -- what do I have in common with kids my own age? Nothing.' "
His explosive rages grew more frequent. After exhausting himself, he'd be aghast at his behavior, afraid that people would leave him and not return.
Murphy was disturbed by David's preoccupation with death and fascination with fire. He drew giant flames to burn down the hospital or his home. He'd then pretend to extinguish the flames by urinating on his drawing.
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.
The transplant seemed to go well, and for a few months, doctors dared to hope that David might leave the bubble. But by December, it was clear that something was very wrong. In early February, David was plagued with diarrhea, fever and vomiting so severe that he had to be removed from the bubble to be given intensive treatment. He died 15 days later, on February 22.
It turned out that the screens of Katherine's bone marrow had missed the presence of Epstein-Barr, the virus that produces mononucleosis. An autopsy revealed that David's body was riddled with tumors; he died of Burkitt's lymphoma. According to Dr. Shearer, the information gleaned from David's autopsy led to the discovery that viruses can cause cancer. Besides specific medical advances, David's case also changed the way that doctors approach genetic problems. "What David's story best illustrates is medicine's hopelessness in dealing with symptoms of disease," says Terry Sharrer, the curator of health sciences at the Smithsonian Institution in Washington, D.C. David's space suit and one of his isolators are now part of the Smithsonian's collection.
According to Sharrer, the Bubble Boy's life coincided with the birth of molecular medicine, which is aimed at fixing a genetic fault rather than combating its results. "David's case," he says, "ended a line of medical thinking that went back a thousand years."
During the last 15 days of David's life -- his first days outside a sterile field -- he spent many of his conscious hours watching TV. He was amazed by the inaccuracies in the saturation coverage of his life and imminent death. And he was especially irritated by a reporter who said his space suit had given him mobility.
"Mobility?" David asked Murphy rhetorically. "What mobility?"One last time, he made her promise that she'd write a factual account of his life and death.
She began the book about eight months later. She wrote in her spare time, snatched from the moments when she wasn't at work or caring for her ailing mother. Along the way, she obtained the written permission of both the Vetters and officials at Texas Children's Hospital and Baylor College of Medicine.
In 1995, Mary Murphy's book seemed on the verge of publication. In its spring catalog, WRS Publishing called it a "captivating inside story" and "provocative question-raiser." But as it turned out, some people close to David would rather not see the questions raised.
In February, Dr. Feigin wrote WRS that he'd been told that portions of the book were drawn from conversations between hospital employees and David or his parents. He warned that such usage might violate Texas laws providing for patients' privacy, and suggested that the publisher review the manuscript carefully.
Roughly a month later, WRS received another letter, this one from David's parents, who had divorced. His father, David Vetter Jr., is now the mayor of Splendora. His mother, Carol Ann Demaret, is married to Kent Demaret, who as a reporter covered the Bubble Boy story for People magazine.
After reading a draft of Murphy's book, Demaret drafted a letter blasting it. Over the course of 28 pages, he complained that the work was "not defensible on any grounds" and amounted "to an assault on a dead child." The letter suggests that Murphy manipulated David and that he would never have asked her to write such a book. It also complains that the words she attributes to David are much different from his way of speaking. "The supposed 'quotes' are not in the true 'voice' or spirit of David," the letter states. "They do, however, sound exactly like Murphy."
It is true that much of what Murphy says and writes about in her book cannot be corroborated, since the people who could confirm or refute her claims refuse to be interviewed. But many of the letter's objections simply do not pass muster. For instance, the family ridicules as a "hallucination" Murphy's contention that David was manipulative -- an observation previously published in a 1977 academic paper in Pediatric Research. Additionally, during his short life it was often reported that David had both an above-average intellect and vocabulary.
David's parents declined to be interviewed for this story. Contacted by phone, David Vetter Jr. said, "I don't have time to talk to you. I don't want to talk with you. Thank you for calling."
Carol Ann Demaret's phone was answered by her husband, who said in a friendly fashion that he doubted that she'd be interviewed. By mail, he later confirmed that.
During his phone conversation with the Press, Demaret described the book as "bad news." Asked about the relationship between Mary Murphy and David, he replied, "She visited him occasionally." Of all the charges leveled against Murphy, the most unlikely one is that she exaggerated her relationship with the boy. Even Team David members who disagree with her conclusions confirm that she and David were close. "In order for David's life to be most meaningful, his parents and we all tried to be upbeat about it even though we knew that things were wrong," said Mary Ann South, one of the original three doctors. "As I recall, [Murphy] picked up on a lot of developmental things about him that nobody wanted to face."
Facing unpleasant truths -- especially about well-meaning people -- is never easy. University of Houston history professor James H. Jones is the author of Bad Blood: The Tuskegee Syphilis Experiment, which documents a 40-year study in which more than 400 black men with syphilis were deliberately left untreated. In the foreword to Murphy's book, Jones stated that she shows how "good people err for the best of reasons."
"If David's life proved anything," wrote Jones, "it was that love, kindness and good intentions do not necessarily translate into sound decisions or produce the desired results."
Last fall, Mary Murphy began having nightmares. In the recurring dreams, she somehow disappointed her mother and could never reach a desired destination. She awoke with an overwhelming sense of sadness. Her psychiatrist told her the dreams were related to the book. "I made a promise," Murphy explained, "and I need to keep it."
Now 70, she is reshaping the manuscript and hopes to find another publisher. But she won't water down her thesis; she promised to tell David's story, no matter how sad.
In February 1984, she visited David the day he'd been removed from his bubble. He was conscious and calm, and seemed to realize he was dying. Wearing surgical gloves, she touched him for the first time outside the bubble, helping him to sit up and adjust his surgical mask. They held hands.
From his hospital bed, he asked that the miniblinds be raised; he wanted to see the view from his new room. But instead of the expected sunset, the window revealed only a brick wall. Murphy began to cry.
For once, their roles were reversed: David tried to comfort Murphy, reminding her of the wall in a children's book she used to read him. David had spent his whole life with barriers. This last one was hardly the worst.
According to the article his mother and Demaret wrote for People, Mary also held David's hand the night that he died. The story described Mary as David's "close friend."
"When she was leaving," Carol Ann recalled, "David said, 'Remember, I love you, Mary. Good-bye.' He had never said good-bye to Mary. It was always, 'I'll see you later.'
houstonpress.com originally published: April 10, 1997
Bursting the Bubble"Bubble Boy" David Vetter was hardly the happy, well-adjusted child portrayed in the media. Thirteen years after his death, his friend Mary Murphy is fighting to tell his story.BY STEVE MCVICKER
As the "Bubble Boy," David Vetter was famous across the U.S. Newspapers, TV shows and magazines portrayed him as a happy, well-adjusted child who struggled cheerfully against the immune deficiency that condemned him to a life inside a plastic bubble.
But according to a person David called his best friend, the boy wasn't struggling cheerfully. In 1978, although he was not quite eight years old, David had realized his life would be lonely, dull and short. His helplessness enraged him. Before he was born, his body had been donated to science.
"Why am I so angry all the time?" he asked psychologist Mary Ada Murphy one summer evening. As he sat in his plastic isolation chamber on the third floor of Texas Children's Hospital, he could see Fannin Street from the room's window. But he couldn't touch that outside world, or participate in it.
"Whatever I do depends on what somebody else decides I do," he said. "Why school? Why did you make me learn to read? What good will it do? I won't ever be able to do anything anyway. So why? You tell me why."
"I can't say why," replied Murphy. Since David was three, she'd spent countless hours of her personal time with him.
David was angry, and he worried that he was going crazy. Murphy explained to him that anger was a natural reaction to his situation. As usual, she tried to help him cope with an unbearable situation -- a life much different than the one portrayed in the media.
Years later, Murphy said, David asked her to set the record straight, to write a realistic account of his life. In 1995, she planned to publish just such a book: Was It Worth It? The True Story of David the Bubble Boy. But shortly before her book was to be released, David's parents and Baylor College of Medicine officials sent strongly worded letters to the publishing company -- WRS, a small outfit in Waco -- withdrawing the written permission they'd given Murphy to write about David, questioning her facts and hinting at a lawsuit. WRS backed down, and the book never appeared.
As told by Murphy, David's story is not of triumph over adversity, but of the human cost of medicine's headlong rush toward the new. Even 13 years after his death -- when the ethical debate has moved on to cloning and genetic screening -- his story still serves as a cautionary tale.
And it continues to divide the opinions of people who cared for him. One member of the group that treated David asked not to be quoted by name for fear that Mary Murphy's enemies would retaliate. "It is important for you to understand that there is a powerful hierarchy at Texas Children's Hospital," said the former hospital employee. "And they are very angry at Mary. And they do not want to be reminded in any way, shape or form that this may have been a bad decision."
In 1970, Carol Ann and David Vetter Jr. had their first son -- also named David Joseph Vetter. Six months later, the baby died of Severe Combined Immune Deficiency Syndrome. He'd been born with a defect in his thymus, a ductless glandlike structure crucial to developing disease resistance. He was at the mercy of any passing germ.
A trio of doctors from Baylor College of Medicine told the Vetters that the defect might have been caused by a mutant gene. If so, the probability that another of their children would bear the disease was 10,000 to 1. But the doctors also explained that the defect might be carried on one of the mother's X chromosomes. If that was the case, and the Vetters had another son, the odds were 50-50 that he, too, would be afflicted by SCIDS.
The doctors -- John Montgomery, Mary Ann South and Raphael Wilson -- told the Vetters that should they choose to have another child, and should that child also have SCIDS, the newborn could be placed in an almost completely sterile isolator that would protect him from disease until a cure was found -- which, the doctors thought, was only a matter of time. The project would be financed with federal research grants.
The Vetters were predisposed to the doctors' plan: They were anxious to have another child, especially a son to carry on the family name. As Catholics, they may have been especially swayed by Dr. Wilson, a scientist who studied germ-free environments and was also a brother in the Order of the Holy Cross. In Europe, Wilson had been involved in a similar project: Two retarded twins had been successfully treated in sterile isolation. Remarkably, the twins' immune systems developed to the point that they could be removed from their isolators before they turned three.
There was little discussion -- and certainly no public discussion -- of what would happen if no cure for SCIDS appeared soon, or of how long a child could or should be kept in such isolation. The medical technology existed. The ethical questions would come later.
As was later reported in People magazine, the Vetters' second David Joseph -- the one who would become famous -- was delivered by a cesarean section on September 21, 1971. The room at St. Luke's Episcopal Hospital had been cleaned five times in an attempt to make it as germ-free as possible. No more than ten seconds after David was removed from Carol Ann's womb, he was placed inside the sterile plastic isolator that would be his home.
Prior to the delivery, the Vetters had arranged for a priest to be on hand to baptize their son after he'd been placed inside the bubble. Like almost everything else David would touch during the next 12 years, the holy water was sterilized.
David was transferred to a room at Texas Children's Hospital, which was then a part of St. Luke's. His bubble, made of transparent polyvinyl chloride film, sat on a plain wooden table next to a window.
Attached to the "crib bubble" was a small "supply bubble," which contained items such as diapers, clothes, vitamins, food, washcloths, medicine and water. Sterilizing such supplies was no simple task. First, labels and glue were removed from bottles and jars containing pre-sterilized food. Then those and other necessities were loaded into perforated cylinders, which were placed in chambers filled with ethylene oxide gas, at a temperature of 140 degrees Fahrenheit, for four hours. Afterward, the containers had to be aerated for one to seven days before they could enter the bubble.
The walls of the bubble were fitted with heavy-duty rubber gloves so that his parents and medical personnel could handle David. Using those gloves, they diapered and fed the baby, and hugged him as best they could.
Mary Murphy's office was only two doors away from David's room. She was working as a psychological associate at Baylor College of Medicine's Center for Developmental Pediatrics, and she watched as a constant parade of visitors -- princes and royalty, even Beverly Sills -- trooped past her door, intent on seeing David; he served as a kind of tourist attraction for VIPs. It was said that Hermann Hospital had a helicopter, and Texas Children's had the Bubble Boy.
Murphy passed by David's room many times each day, but she never looked in. The project appalled her, and she wanted nothing to do with it.
Murphy had come to psychology late in life. As a college student during World War II, she'd studied to be a mechanical engineer. But instead of pursuing that career, she married and moved to Texas. After her husband left her, she and her infant son found themselves alone in Houston.
"I had a baby, a penny and a potato," laughs Murphy, a matronly but attractive woman with short white hair. To support her son and herself, she went to work as a waitress. Murphy remarried, and in the late 1950s, she enrolled part-time at the University of Houston. She graduated in 1967, and earned her master's degree two years later. While an instructor at Baylor, she began her doctoral work. In her office at Texas Children's, she struggled to complete her dissertation, examining the stresses that beset families of children with birth defects.
By the fall of 1974, David was no longer a constant presence outside Murphy's door. A plastic bubble had been set up in the Vetters' home in Conroe, and the child could spend two to three weeks at a time there. Ironically, Murphy met David not at the hospital, but in his home.
Her mentor, Dr. Barry Molish, was working on an article about David's psychosocial development, and asked Murphy to assist him by giving the child psychological and intelligence tests. She agreed reluctantly, and on the day after David's third birthday, she and Molish drove to Conroe in the pouring rain.
To Murphy's surprise, she was smitten with David, a handsome, dark-complected boy with a thick mop of black hair and dark, wide-spaced eyes. She wondered how the boy could survive in such a confined space. The isolator bubbles were periodically replaced with larger models as David grew, but even the largest was tiny: six feet by two feet by four and a half feet. (Later, a sterile "playroom" would be attached.)
Murphy could barely hear the boy speak over the roar of the bubble's blower motors, and she asked to turn them off. David laughed. "He said I was dumb," she remembers, "and didn't I know that the bubble would deflate if the motors were turned off?"
In spite of the noise, Murphy administered tests. Asked to define a tree, David responded that it was a brown rectangle with a green oval on top. She was stunned, amazed that a three-year-old would know so much about geometry but so little about the stuff of daily life.
No, she told David, the green part was made of leaves. He replied that she was totally wrong.
To prove her point, she fetched her umbrella and went outside. As David watched through a window, she broke a small limb off a tree and brought it inside for him to examine through the plastic. "You never saw so much astonishment in your life," she remembered. She left the Vetter home that night feeling that there was much she could teach David -- but she had no intention of doing so.
A few days later, Murphy's boss informed her that David was back at Texas Children's, and that his mother and the hospital staff were having trouble with him. Specifically, a photographer from United Press International was standing by to snap the first pictures of David as he entered his newly constructed playroom. Roughly 11 feet long, six and a half feet wide and eight feet tall, the sterile space marked a huge addition to David's world. But to the embarrassment of the medical team, he refused to crawl through the stainless steel tubing that connected his bubble to its new addition. Since Murphy and David had gotten along so well, David's mother suggested that Murphy might help coax David into the play area. Murphy agreed to try -- but only after she finished her other duties for that afternoon.
Around 4:30, she walked the short distance from her offie to David's quarters, confident that she could remedy the situation in no time flat.
David seemed glad to see Murphy, whom he remembered as "the lady with the leaf." Even so, he rebuffed her attempts to get him into the playroom. After a couple of hours, she gave up for the day.
As she left, David looked in her eyes. "Lady," he said, "you will be back."He was right. By the following day, Murphy had decided that trying to talk David into the playroom was useless. Instead, she borrowed a bowl of goldfish from the desk of a third-floor secretary, and placed the bowl on the far side of the playroom. David was excited by the fish, and tried to convince Murphy to bring them next to his crib. She refused.
The strategy worked. Anxious to examine the fish more closely, David crawled through the tube, down the three-stepped ladder and into the playroom. UPI got its photographs, the medical team got its good publicity and Murphy was invited to help in David's day-to-day care.
Privately, nurses complained to her that the playroom incident was minor compared to other problems they were beginning to have with the child. "They wanted him to behave and be compliant," said Murphy. Eventually, she became known as "the fire extinguisher": the person to call when David was in emotional crisis.
Three and a half years after David's birth, Texas Children's Hospital finally discussed the ethics of keeping a child isolated indefinitely. Now many hospitals have ethics committees that routinely consider complicated decisions. But in the '70s, such groups were rare.
On February 26, 1975, about 30 doctors, theologians and other concerned parties -- including Mary Murphy -- gathered in the hospital's conference room. All the chairs were filled, and people stood in the back of the room. Dr. Wilson, the project's scientific director, gave a synopsis of David's history, then opened the session for questions.
The most pointed of those questions came from Dr. Robert Main, another chaplain. "You're in the honeymoon stage of treating him now," said Main, who had examined David. "One day he will take a look at himself and decide he doesn't want to be in there till he gets to be 15 years of age."
Nonetheless, Dr. Montgomery, another of David's original doctors, brought the meeting to an upbeat close. Under similar circumstances, he said, he would start this project again with another child.
"How many more?" someone asked."Until I determined that there was no more information to be gained by such a thing," Montgomery replied, "or if the outcome was certain."
The Reverend Raymond J. Lawrence, the chaplain of Texas Children's, had convened the meeting, but he was disappointed by its results. The real ethical issues, he says, were never discussed.
"The great scandal of the Bubble Boy was that he was conceived for the bubble," says Lawrence, now director of the department of pastoral care at the Presbyterian Hospital in New York City. "The team that did this didn't think through this very well. They didn't consider what would happen if they didn't find an immediate cure. They operated on the assumption that you could live to be 80 years old in a bubble, and that would be unfortunate but okay."
In the years since, Lawrence's outrage has not abated. He continues to maintain that the three original doctors convinced David's parents to conceive him because they wanted a test subject for their studies of immunology. The doctors flatly deny the charge.
No other ethical conferences on the subject were ever convened. And when contacted recently, Dr. Montgomery stood firmly by the decision to place David in the bubble. "At the time, we were encouraged by everything we knew," he says. "If people didn't take chances, none of us would be here. Columbus would have stayed in Spain and would have been selling tortillas, because he was warned he would sail off the edge of the earth."
Mary Murphy didn't have a lot of free time to spend with David. During the day, her job required her to evaluate other kids at the hospital's developmental center; at night, she needed to work on her doctoral thesis.
She says David offered a bargain: If she would work on her dissertation in his room at the hospital every other evening, including Saturdays, he would promise not to talk.
As Murphy worked on her dissertation, David spent his time watching television and, later, doing his homework. (He had tutors, and attended an elementary school class in Conroe by telephone hookup.) He showed a flair for math, but rarely read for pleasure, a fact that disappointed Murphy. She'd hoped that books would provide him an escape from the bubble.
Instead, over the years, his sense of hopelessness increased. "Even though David was only five," wrote Murphy, "he recognized his difference and dreaded what the future held -- limited choices, feelings of alienation and an increased need to be polite and compliant so as not to reveal his anger."
Most of the time, David lived deep within himself. "He was always used to being very polite," she remembered. It took her a long time to tell when he was saying what he meant, and when he was saying what she wanted him to say. "That is, I guess, one of the things that kept me uncomfortable," she admitted. "I sensed he was being excruciatingly polite sometimes when he didn't really want to be. Most kids that age don't have that kind of façade. They don't bother."
Sometimes, though, David revealed his inner turmoil -- though at great cost to himself and the people who cared for him. Given the news that Dr. Wilson had a heart attack and was in intensive care, he smeared excrement all over the inside of the bubble; hospital workers spent three days cleaning the mess. Murphy theorized that David's reaction betrayed his deep fear of abandonment: Wilson's heart attack was one more piece of evidence that people would leave him, and that he was powerless to follow.
Other fears manifested themselves in recurring dreams. In one, David was attacked by thousands of spiders. In another -- which disturbed him even more -- the King of Germs dispatched thousands of his wives to invade the bubble. David was able to kill the wives, but the king simply married more to send after him.
"I don't know if it's a bad dream or if they're really pouncing on me," he told Murphy. "Maybe I'm crazy. Maybe I'm losing my mind."
Murphy tried to turn the dreams into games and think of ways he could kill his dream world enemies. Though he learned to cope with the nightmares, she says the fear of insanity plagued him from then on.
In 1977, NASA developed for David what was known as the Mobile Biologistical Isolation System. Basically, it was a $50,000 space suit that would allow David to venture outside the bubble. That July, Murphy joined the crowd in David's room: David's parents, NASA engineers and hospital staff, all gathered to see his first adventure in the suit. A camera crew was on hand to record the event.
To get into the suit, David had to crawl through an eight-foot tunnel that connected the suit to the bubble. Every movement was scheduled, but as the countdown began, Murphy says David asked her to hold him with the gloves that extended into the bubble. He wanted to be as far from the space suit as possible.
"I don't believe this," he said. "Mary, can you believe this? Look at that thing at the end of the tunnel. Now that's what I'm afraid of. Germs could be in there."
When the time came for David to crawl into the tunnel, he balked, and said he needed a few more minutes. After those minutes passed, he repeated his request -- and after those minutes, asked yet again for a few more. Finally, after the camera crew left the room, David entered the tunnel, pathetic and trembling. At one point, he got his head stuck in the suit and let out a bloodcurdling scream.
But once in the suit, he discovered it wasn't so bad. He held his gloved hands in front of his faceplate, grinned from ear to ear and said, "I like it." Never before had he taken more than six steps in any direction. But with his mobile support system, he was able that day to travel about 30 feet down the hallway, where he got a cup of ice and handed it to a nurse. It was the first time he'd ever given something to another person.
Though David seemed excited by the excursion, he voiced reservations about the suit before each of his six subsequent outings. When he outgrew the suit, it was replaced -- but he never wore the replacement.
Years later, when David saw a videotape of the made-for-TV movie loosely based on his life, he was most amused by the movie's treatment of the space suit. In The Boy in the Plastic Bubble, John Travolta played a 17-year-old boy who'd lived his entire life in sterile isolation. David laughed at the idea that his character could simply wear the space suit back into the isolator without contaminating the bubble.
In the grand tradition of made-for-TV movies, The Boy in the Plastic Bubble ended on an upbeat note: Travolta, without consulting anyone, simply decided to walk out of the bubble, join his buxom girlfriend on horseback and ride off into the sunset -- presumably to a good time and a certain death.
Certainly, the movie was a long way from realism. But unlike the press, Hollywood at least recognized that David's situation could not and should not go on indefinitely.
Newspapers and TV revealed no such shreds of grimness. In September 1977, the Houston Post reported cheerfully that "a sixth birthday is extra special for most boys and David's will be no exception." The article maintained that David "continues to thrive and develop at above-average rates." To the outside world, David was just a happy, healthy child, miraculously unscathed by the sterility of his life.
Reality was less pleasant. "The summer before David's eighth birthday marked the beginning of the end," Murphy wrote. "Painfully aware of being different and not belonging to a peer group, he inevitably concluded, 'Let's face it -- what do I have in common with kids my own age? Nothing.' "
His explosive rages grew more frequent. After exhausting himself, he'd be aghast at his behavior, afraid that people would leave him and not return.
Murphy was disturbed by David's preoccupation with death and fascination with fire. He drew giant flames to burn down the hospital or his home. He'd then pretend to extinguish the flames by urinating on his drawing.
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.
The transplant seemed to go well, and for a few months, doctors dared to hope that David might leave the bubble. But by December, it was clear that something was very wrong. In early February, David was plagued with diarrhea, fever and vomiting so severe that he had to be removed from the bubble to be given intensive treatment. He died 15 days later, on February 22.
It turned out that the screens of Katherine's bone marrow had missed the presence of Epstein-Barr, the virus that produces mononucleosis. An autopsy revealed that David's body was riddled with tumors; he died of Burkitt's lymphoma. According to Dr. Shearer, the information gleaned from David's autopsy led to the discovery that viruses can cause cancer. Besides specific medical advances, David's case also changed the way that doctors approach genetic problems. "What David's story best illustrates is medicine's hopelessness in dealing with symptoms of disease," says Terry Sharrer, the curator of health sciences at the Smithsonian Institution in Washington, D.C. David's space suit and one of his isolators are now part of the Smithsonian's collection.
According to Sharrer, the Bubble Boy's life coincided with the birth of molecular medicine, which is aimed at fixing a genetic fault rather than combating its results. "David's case," he says, "ended a line of medical thinking that went back a thousand years."
During the last 15 days of David's life -- his first days outside a sterile field -- he spent many of his conscious hours watching TV. He was amazed by the inaccuracies in the saturation coverage of his life and imminent death. And he was especially irritated by a reporter who said his space suit had given him mobility.
"Mobility?" David asked Murphy rhetorically. "What mobility?"One last time, he made her promise that she'd write a factual account of his life and death.
She began the book about eight months later. She wrote in her spare time, snatched from the moments when she wasn't at work or caring for her ailing mother. Along the way, she obtained the written permission of both the Vetters and officials at Texas Children's Hospital and Baylor College of Medicine.
In 1995, Mary Murphy's book seemed on the verge of publication. In its spring catalog, WRS Publishing called it a "captivating inside story" and "provocative question-raiser." But as it turned out, some people close to David would rather not see the questions raised.
In February, Dr. Feigin wrote WRS that he'd been told that portions of the book were drawn from conversations between hospital employees and David or his parents. He warned that such usage might violate Texas laws providing for patients' privacy, and suggested that the publisher review the manuscript carefully.
Roughly a month later, WRS received another letter, this one from David's parents, who had divorced. His father, David Vetter Jr., is now the mayor of Splendora. His mother, Carol Ann Demaret, is married to Kent Demaret, who as a reporter covered the Bubble Boy story for People magazine.
After reading a draft of Murphy's book, Demaret drafted a letter blasting it. Over the course of 28 pages, he complained that the work was "not defensible on any grounds" and amounted "to an assault on a dead child." The letter suggests that Murphy manipulated David and that he would never have asked her to write such a book. It also complains that the words she attributes to David are much different from his way of speaking. "The supposed 'quotes' are not in the true 'voice' or spirit of David," the letter states. "They do, however, sound exactly like Murphy."
It is true that much of what Murphy says and writes about in her book cannot be corroborated, since the people who could confirm or refute her claims refuse to be interviewed. But many of the letter's objections simply do not pass muster. For instance, the family ridicules as a "hallucination" Murphy's contention that David was manipulative -- an observation previously published in a 1977 academic paper in Pediatric Research. Additionally, during his short life it was often reported that David had both an above-average intellect and vocabulary.
David's parents declined to be interviewed for this story. Contacted by phone, David Vetter Jr. said, "I don't have time to talk to you. I don't want to talk with you. Thank you for calling."
Carol Ann Demaret's phone was answered by her husband, who said in a friendly fashion that he doubted that she'd be interviewed. By mail, he later confirmed that.
During his phone conversation with the Press, Demaret described the book as "bad news." Asked about the relationship between Mary Murphy and David, he replied, "She visited him occasionally." Of all the charges leveled against Murphy, the most unlikely one is that she exaggerated her relationship with the boy. Even Team David members who disagree with her conclusions confirm that she and David were close. "In order for David's life to be most meaningful, his parents and we all tried to be upbeat about it even though we knew that things were wrong," said Mary Ann South, one of the original three doctors. "As I recall, [Murphy] picked up on a lot of developmental things about him that nobody wanted to face."
Facing unpleasant truths -- especially about well-meaning people -- is never easy. University of Houston history professor James H. Jones is the author of Bad Blood: The Tuskegee Syphilis Experiment, which documents a 40-year study in which more than 400 black men with syphilis were deliberately left untreated. In the foreword to Murphy's book, Jones stated that she shows how "good people err for the best of reasons."
"If David's life proved anything," wrote Jones, "it was that love, kindness and good intentions do not necessarily translate into sound decisions or produce the desired results."
Last fall, Mary Murphy began having nightmares. In the recurring dreams, she somehow disappointed her mother and could never reach a desired destination. She awoke with an overwhelming sense of sadness. Her psychiatrist told her the dreams were related to the book. "I made a promise," Murphy explained, "and I need to keep it."
Now 70, she is reshaping the manuscript and hopes to find another publisher. But she won't water down her thesis; she promised to tell David's story, no matter how sad.
In February 1984, she visited David the day he'd been removed from his bubble. He was conscious and calm, and seemed to realize he was dying. Wearing surgical gloves, she touched him for the first time outside the bubble, helping him to sit up and adjust his surgical mask. They held hands.
From his hospital bed, he asked that the miniblinds be raised; he wanted to see the view from his new room. But instead of the expected sunset, the window revealed only a brick wall. Murphy began to cry.
For once, their roles were reversed: David tried to comfort Murphy, reminding her of the wall in a children's book she used to read him. David had spent his whole life with barriers. This last one was hardly the worst.
According to the article his mother and Demaret wrote for People, Mary also held David's hand the night that he died. The story described Mary as David's "close friend."
"When she was leaving," Carol Ann recalled, "David said, 'Remember, I love you, Mary. Good-bye.' He had never said good-bye to Mary. It was always, 'I'll see you later.'
houstonpress.com originally published: April 10, 1997
posted by Raymond @ 7:14 PM
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