waiting with gabriel - a story of cherishing a babys brief life

This book exemplifies bittersweet wisdom. Initially I wanted to read it because I have an overall interest in medical ethics, and also because I am acquainted with the physician who was the family's pediatric cardiologist.Halfway through her third pregnancy, author Amy Kuebelbeck and her husband Mark Neuzil learn that the child Amy is carrying, a boy they name Gabriel, has hypoplastic left heart syndrome (HLHS). A child with HLHS is essentially missing the heart's strongest pumping chamber; in a best-case scenario, he or she survives a series of three palliative surgeries which result in adequate but never normal cardiac function. Offered three options (the three surgeries, an unlikely infant heart transplant, or comfort care), Amy and Mark research HLHS and elect to keep their intuitive first choice, comfort care. Determined that Gabriel's entire lifespan be as full and loving as possible, Amy, Mark, and their two preschool children prepare for Gabriel's birth, brief life, and death.Though any book about anticipated newborn death risks being melancholy, even maudlin, "Waiting with Gabriel" is suffused with honesty and light, even good humor: while Amy is still pregnant, she and Mark "take" Gabriel on family outings: to play on swings, to a baseball game, and to a chorus concert.Readers confronting their own prenatal diagnoses should be warned that this book's pages are tinged, albeit slightly, with antiabortion sentiments. A (presumably liberal) Catholic, Amy does not write that "no one should abort a child with a fatal medical condition unless the mother is at risk," but this is certainly implied in her subtext. Having been criticized for refusing aggressive medical treatment for Gabriel, I would have expected her to be more understanding.My only serious complaint about this book is that since Amy and Mark are "atypical" parents in many positive ways, "average" parents may find it difficult to relate to them. At the time she was pregnant with Gabriel, Amy was an Associated Press reporter who probably had access to more sources of medical information than anyone outside the health professions. Mark was a college professor. They were financially secure and had a loving, talented network of family and friends to help them through their journey, including a grandfather who built Gabriel's custom casket and a friend who wrote a song for Gabriel's funeral. How many parents have this kind of knowledge and support?Rest in peace and love, Gabriel. Your life had (and still has) meaning.