THE LONG DYING OF BABY ANDREW

When the Stinsons' baby was born nearly four months early--a fragile 1 lb. 12 oz.--the prognosis was grim and the couple was resigned. But a pediatrician intubated the tiny boy, allowing respiration, and so opened up a series of medical/legal/moral dilemmas which the Stinsons first aired in the Atlantic Monthly in 1979. This unsettling book is an expanded version of that article: an account of their experiences, a partial indictment of research hospital organization, and a thoughtful rendering of the ethical questions which neonatal unit procedures raise. Prepared for the worst, the Stinsons were astonished by the doctors' prediction of survival and subsequent normal development. The family's hopes seesawed. Philosophically opposed to the hospital's ""heroic measures,"" they painfully endured strains on their family life and threats to their economic stability. The city hospital staff, as depicted here, grossly overestimated the boy's chances, misrepresented his condition, and consistently failed to understand either the couple's moral position or the financial burden and emotional acrobatics which Andrew's struggle thrust upon them. Instead they saw the Stinsons as hostile, argumentative, and uninterested, and they forced what should have been ""a simple private sorrow"" through a bureaucratic crucible. Through it all Andrew suffered offstage, with few opportunities for attachment and a heartbreaking history of small gains and major setbacks. Using their journal entries and excerpts from Andrew's hospital record, the Stinsons work hard to illuminate their particular case and the issues of more general concern, including doctor/layman jurisdictions, financial accountability, and the ultimate question: When is intervention truly human, when a mere research exercise?. A courageous, intelligently assembled offering, often disquieting and always absorbing.