Saturday, November 6, 2010
The review below just appeared in the Early Fall 2010 “Michigan Alumnus” magazine published by the University of Michigan (Go Blue!) Alumni Association of which I am a member. I graduated in May 1987 and am excited to return to Ann Arbor later this week as part of my participation in the Jewish Book Network’s fall of 2010 book festival.
This is the story of Henry Goldberg, a fearless child born with a genetic blood disease, and his pioneering parents, Laurie and Allen, who will push the limits of medical science attempting to save him. It’s also the story of others who fought for him: a team of leading specialists along the East Coast, in Detroit and in Minneapolis, and a devoted circle of family, friends, colleagues and teachers at home in the Washington, DC, area.
The hope for Henry is that a stem cell transplant from the umbilical cord of a sibling donor will wipe out the disease, Fanconi anemia. For that to happen, Laurie needs to give birth to a healthy child who doesn’t have the disease and whose human leukocyte antigen (HLA) is a perfect match for Henry. The probability of that happening in a natural pregnancy is a mere 18.75 percent.
Medical science offered the promise of greatly improving those odds, but not without creating ethical and political controversy. Through a process called preimplantation genetic diagnosis, which combines in vitro fertilization with genetic testing before embryo transfer, it is possible to screen for a healthy child who is a perfect HLA match for Henry. The only problem is that it has never been done before. Laurie, Allen and their medical team would be the first to attempt it.
What follows is a detailed account of their exhaustive efforts to make the process work. Nine times Laurie attempts it, and nine times it fails. Yet she balances this painful medicine with the everyday joys of motherhood.
Giving her narrative its great humanity and poignancy is her ability to fold the ordinary moments of her life into this mixture of extreme medicine, emotional chaos and tested faith. It’s her attention to the smallest detail—whether describing a meal or simply telling us that she and Henry used grapes for eyes when building a snowman—that reminds us how much of life is made up of such moments. Even in the face of imponderable tragedy, life is to be experienced.
And Henry does so fully and unflinchingly. “Bring it on” or “let’s get it over with,” he stoically tells his doctors before each poke or transfusion. Incredibly, Henry never sees himself as sick, which makes him loved all the more by his legion of devoted caretakers, friends and admirers. In his seven short years, Henry has two dates with his nurse, travels to Spain and Disney World, and meets President Clinton, Batman and Cal Ripkin Jr.
Although Henry succumbs to Fanconi anemia, he remains valiant until the end and, ultimately, his parents’ dogged efforts at preimplantation genetic diagnosis paves the way for other families. At one point in the story, following yet another medical emergency, Henry refers to himself as “the boy who lived.” In this, his mother’s loving tribute, he is very much alive.
By Steve Rosoff, MA ‘87