Doron Weber's memoir Immortal Bird begins with a simple moment of parental unease: during a stroll up a Brooklyn avenue, Weber senses that his 12-year-old son, Damon, is overdue for a growth spurt. Weber cannot help being extra-vigilant about his firstborn, a "blue baby" whose heart lacked a second ventricle, requiring two open-heart surgeries by the age of four. The second operation, a variation on the Fontan procedure, re-routed Damon's under-oxygenated blood past the missing pump area directly to his lungs where it could pick up oxygen and discharge carbon dioxide. With more oxygen-rich blood, Damon flourished for eight years, but unfortunately his father's worry proves significant: he has also developed protein-losing enteropathy (PLE), a rare and insidious post-surgical condition in pediatric Fontan patients which causes vital protein molecules to leak out of the digestive system. With no fail-safe treatment, the PLE diagnosis forces Doron and Shealagh Weber into a morass of medical decision-making while their son strives to lead the life of a typical teenager.
Weber, a program director for the Alfred P. Sloan Foundation, intersperses family vignettes with doctor appointments and short, well-parsed explanations as he investigates Damon's options. Weber's fearless questioning of experts is a primer of parent advocacy that demonstrates the awful responsibility of managing the care of a child who suffers from a poorly understood life-threatening disease. Even as the urgency of Damon's PLE intensifies, Weber finds moments of family joy and admires his son's determination to keep the hospital part of his life in the background. Excerpts from Damon's blog bring the teenager's witty and tough-tender voice into the memoir, including notes on filming his cameo on Deadwood and musings on how his health challenges might limit his goals for high school.
Immortal Bird's momentum and the author's prose style peak in the last third of the memoir, as the Webers make a brave and wise decision only to end up battling an overstretched hospital and a villainously cavalier doctor. In the dramatic and unforgettable debacle that ensues, Damon and his parents achieve moments of devastating grace. By writing Immortal Bird, Weber has transformed his family's experience of medical strife into a work of art that teaches us how to advocate, how to love and how to transcend the unthinkable. --Holloway McCandless
Shelf Talker: Immortal Bird is at once the compelling narrative of a father's quest to save his son; a memoir of family grace; and a profile of a teenager whose wit and stoicism transcend his illness.