Tuesday, April 11, 2006
On the tube: The Boy in the Bubble
Last night, PBS aired a documentary about the life of David Vetter, "The Boy in the Bubble." David was born about the same time I was, and I remember seeing the images of him. The film on PBS provides the story that goes along with those indelible images, and it seems mostly like a story about the consequences of misplaced optimism. Before David was conceived, his parents had lost an earlier son to the same immune deficiency disease (SCID), and had received counseling from doctors about the possibility that another child would be born with the same disease. The doctors had expressed confidence that, if a subsequent child were born with SCID, they would be able to perform a bone marrow transplant that would restore the child's immune system.
The odds did not, however, support the doctors' optimism. Not the odds as calculated based on the state of medical knowledge at the time, anyway. The doctors' optimism was based on a belief that they would be able to figure something out, that the accelerating progress of medical knowledge would provide a solution to a problem that was not merely possible but likely to occur. It's probably an overstatement to call it hubris, but it has a similar flavor. David's birth and life turned into an experiment, an experiment for which nobody gave (or was capable of giving) informed consent. The boy in the bubble made a significant contribution to medicine, and to our awareness of the ethical issues involved in medicine.
I've never really held out hope that some day a cure will be found for multiple sclerosis. Even before I knew much about it, before I had significant symptoms, it just never really seemed like a possibility. Maybe that has something to do with David's life and death.
Link to PBS page about the documentary.