The New York Times website has been featuring an embedded link to a kind of video report on a look back at the life and death of David Vetter –– the young man who died at the age of 12 in 1984 who was sometimes known as "the boy in the bubble." Of course, he was no young boy by the time he died and, in fact, his maturation to a very young man with intelligence, insight, and crippling depression and anxiety because of his life circumstances is what makes the story of his life, suffering, and death so poignant.
The NYT clip is interesting but the PBS American Experience documentary from 2006 is even more interesting, if you care to learn more. The latter is, as critics have noted, pretty heavy handed in its bio-ethics overlay on the unfolding of David Vetter's life. These are questions of style. The bio-ethics of every moment of David's parents' lives — before he was even conceived — are in your face almost immediately. His mother, in restrospect, acknowledges that a few weeks after the death of David's older brother from SCID, she borrowed from the certainty of the medical team to satisfy her desire to have as many children as God would give her. The telling, in retrospect, of the uncertainty of the medical team that they could do any more than keep David Vetter alive for some period of time when he might be matched with a perfect donor (as was medically necessary at the time) for his transplant is what David Vetter's mother was in fact drawing on. And that uncertainty, however unexplored before David's conception and birth, was fully exposed by the time he had lived in complete isolation from all direct human contact for close to twelve years, displaying increasingly disturbing signs of mental illness.
David's life and death presented a natural experiment for the study of Severe Combined Immunodeficiency (SCID), the realization that cancer could be transmitted as a virus (the ultimate cause of his death from the latent unidentified cancer causing virus found in his donor sister's cells), and the impetus to begin to screen for SCID at birth when it became clear that genetic knowledge had advanced to the point that perfect donor matches might no longer be strictly necessary but that any procedure needed to happen either in utero or within the first three months of life in order to make a difference.
Of course, this made me curious to look into the status of newborn screening for SCID. The CDC reports:
Although each state decides which disorders are included in the [NEWBORN] screening, the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) recommends states test for a core panel of 31 congenital disorders. SCID was added to the core Recommended Uniform Screening Panel (RUSP) in 2010.
Illustrating that we often don't find what we don't look for, the 72% of U.S. newborns currently screened for SCID have shown us that SCID's incidence is considerably higher than previously thought and that the disease burden is not evenly distributed in the population (beyond what has long been known about this as a disease of males) and is testing at a particularly higher rate of incidence in Hispanic populations and in some Native American populations.
Now, newborn screening is surprisingly controversial in some states, particularly proposals to expand screening to diseases or disorders that are genetically linked and that may require gene-related therapies to be overcome. "Don't ask, don't tell" may come to have a whole new meaning in this context.