Heart-Wrenching Lecture at Academy Revisits the Miraculous Yet Tragic Life of the ???Boy in the Bubble???

NEW YORK CITY, Feb. 27???For the parents, it sounded like a miracle. Their baby boy was about to be born with a fatal immune system disease that could kill him before his first birthday, but Texas doctors said they could keep him alive inside a sterile plastic bubble until a cure could be found. The plan worked, but nobody expected that David Joseph Vetter would spend nearly all of his 12 years of life sealed alone within the bubble, because a cure tragically would not surface, said independent scholar James Jones, PhD, in a gripping lecture at the Academy on Feb. 25.

???The Boy in the Bubble,??? as David became known to the world in the ???70s, was unable to ever hug or kiss a loved one without a plastic barrier, feel a breeze on his face, or otherwise experience sensations of the outside environment. Jones explained that while David captured hearts worldwide and was portrayed in the media as a happy child, he suffered from gradual mental decline and despair over an intensely restricted life that some argue was not worth living. Jones, whose was delivering the Academy???s annual John K. Lattimer Lecture, told the 40-person audience how the decision came to be made to house David in a bubble, and described the factors that kept him there, the people who made critical decisions about his life, and what the boy???s existence was truly like.

???David lived all but the last few weeks of his life without ever having human contact,??? Jones said in his lecture, entitled ???The Agony of Hope: David Vetter, the Boy in the Bubble.??? ???There was always a membrane between them. He would never smell his mother???s hair; he would never feel the warmth of her touch.???

While doctors demonstrated great medical ingenuity in saving David, neither they nor his parents talked much about would happen if a cure wasn???t found, and how long David could or should live in the bubble, said Jones, who is writing a book about David. His miraculous yet sad life story raises the difficult ethical question of whether a life should always be saved just because it can be.

David was born on Sept. 21, 1971, in Houston with Severe Combined Immune Deficiency (SCID), a genetic disorder that left his body with no immune system to fight infection or disease. The Vetter???s first son had died of the disease at six months of age. Doctors told the parents, Carol Ann and David Vetter, that if they were to conceive another baby boy he would have a 50 percent chance of being born with this condition, but that the baby could be saved by being placed in a sterile isolator immediately after birth. They decided to become pregnant???Carol Ann was Italian and deeply religious and David sorely wanted a son to carry on the family name. ???They had buried a child, and sunshine was offered to them: technology could step up and make it right,??? Jones said.

Seconds after being delivered by Caesarean section at Texas Children???s Hospital, David was placed inside the isolator, a plastic bubble that would safeguard him from germs and viruses until either his immune system matured (as doctors believed might occur) or a cure was found. Everything that went into the bubble had to be sterilized, including diapers, clothing, food, and toys. The walls of the bubble were fitted with heavy-duty rubber gloves so that his parents and doctors could care for David and hug him as best they could. On the projector screen at the lecture, Jones showed heartrending images of David as an infant, naked and smiling inside his sterile bubble, lying on white bedding with teddy bears suspended above him. His parents were standing outside the plastic enclosure, as would be the case for David???s entire life.

Jones gave the audience background about David???s main three-doctor team and his parents, to instill a sense of who they are in order to comprehend how they reached their decision. As Catholics, he said, David???s parents may have been especially swayed by Dr. Raphael Wilson, a specialist in germ-free environments as well as a Catholic brother in the Order of the Holy Cross. When working in Ohm, Germany, Wilson had helped to create a germ-free isolator environment for German twins born immunocompromised. He then worked for legendary cardiologist Dr. Michael DeBakey at Baylor College of Medicine to construct germ-free environments for heart transplant patients.

Dr. Mary Ann South of New Mexico had performed extensive research into the separation of T and B cells from lymphocytes as distinct immunology lines, Jones said. South studied pediatric infectious diseases at Baylor in the lab of renowned Dr. Martha Yow, and was a devoted Baptist. ???Mary Ann South was looking at a clinical goldmine??? in David, Jones said. Dr. John Montgomery, a pediatrician and former linebacker from Alabama, also worked in Dr. Yow???s lab. Dr. Montgomery was deeply affected by the extent of suffering he saw in Korea when serving in the war, Jones said. Upon returning to Baylor after the war to work with children, he was most emotionally impacted by SCID patients. Nine of the SCID children he cared for, died. ???Each one of those patients tore his heart out,??? Jones said. ???He told me, ???I did not become a pediatrician to bury my children. I came to help them.??????

The other extremely influential person in David???s life was hospital psychologist Mary Murphy, who spent many hours directly outside of David???s isolator and became his dear friend and confidante, Jones said. While David tried to keep an upbeat personality at the hospital so that people would like him, he shared his true feelings with Murphy, Jones said. ???She was the person to whom he could really express his frustration,??? Jones said. ???When he was 7, he said to her, ???why am I so angry all the time???????

Jones showed slides of David as a dark-haired, handsome boy with big brown eyes and an infectious smile. Though his life was never normal, David did have the chance to do some normal things. He got an education, through tutors and by attending a local elementary school class by telephone hookup. He was able to live at his home for weeks at a time since the age of three, because a duplicate bubble had been set up at there. He even had some friends who would come to his house to ???hang out.??? As David grew, his bubbles were expanded to several progressively larger chambers to provide more living and play space, and room for supplies. In 1977, in attempt to give David some freedom to walk outside of his cocoon, NASA engineers created a spacesuit-type suit that was connected by hose to his bubble. David never really took to it, wearing it only five or six times. (David's space suit and one of his isolators are now part of the collection of the Smithsonian Institution in Washington, D.C.)

As David matured, he became increasingly despondent about his condition and began losing hope that he would ever permanently leave the bubble. A psychologist who evaluated David at age nine found that life in a bubble had taken a serious toll on David???s mental health. ???He was borderline psychotic,??? Jones said. By the time David turned 12, he was ???hanging by a thread??? and having uncontrollable crying episodes. As David???s original team of doctors left one by one, his sense of panic grew, Jones said, and the troubled boy did a number of things to articulate his rage, including smearing his own excrement on the inner walls of the bubble.

When the new team of doctors took over, they convinced David???s parents that their son should no longer live like this. They decided to perform a bone marrow transplant using a less-than-perfect match???a risk they deemed worthwhile to give David a shot at a normal life. David???s sister served as the unmatched donor for the October 1983 transplant. David survived for a few months in the bubble, but grew critically ill and had to be removed for intensive treatment. David Vetter died 22 years ago on Feb. 22, 1984, 15 days after leaving the bubble.

Jones, a leading historian of American social and intellectual history, said he grew intensely interested in David because he lived in Houston, four or five blocks from Texas Medical Center where David spent his life. ???We followed the story, we wished him well, we grieved when he died,??? Jones said. ???Our son, also named David, was only 4 or 5. When I thought about a child whose death could affect so many people, it got me to thinking about the child???s life.??? Jones is the author of Bad Blood: The Tuskegee Syphilis Experiment, a Tragedy of Race and Medicine and Alfred C. Kinsey: A Public/Private Life, and is working on a book about former President Bill Clinton.

The annual Lattimer Lecture is arranged by the Academy???s Historical Collections division and is supported by John Kingsley Lattimer, an urologist and World War II veteran who retains quite a historical collection of his own, including WC Fields??? top hat, George Washington???s sword, and the bloodstained collar that the Abraham Lincoln was wearing at Ford's Theater. Dr. Lattimer was present at the lecture. ???Thank you for the opportunity to speak in a lecture series that honors a great man,??? Jones said to Lattimer, who smiled graciously.

The New York Academy of Medicine is the country???s premier urban health policy and intervention center, and focuses on enhancing the health of people living in cities through research, education, advocacy, and prevention. It is home to the second largest medical collection open to the general public in the United States.

Posted on February 27, 2006

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