Baby at Risk. The Uncertain Legacies of Medical Miracles for Babies, Families, and Society

Baby at Risk explores the growing phenomenon of "miracle" births and infants born with major medical problems that threaten or impair their health for life. The book examines the new assisted-reproduction technologies that are producing their share of miracle babies---but also a burgeoning population of imperiled newborns. Then there are the neonatal intensive care rescues that keep extremely premature and critically ill babies alive---some to live healthy lives, but others to face a bleak lifetime during which their families must care for them. Baby at Risk asks some very hard questions: whether some high-tech rescues serve the best interests of babies, their families, and the wider social good---or are they just satisfying the contemporary and ever-increasing Western passion for using expensive technologies? And, who are the key people who should be making decisions about imperiled newborns? Like the Terry Schiavo debate, these issues affect not only the patients, their families, and health workers, but also the government, media, and society at large. Through extensive interviews with parents and medical and nursing staff, and an exploration of ethical principles that guide deliberations about medical decisions, Baby at Risk examines the dilemmas that at-risk babies raise, considers the responses of those who care for and about babies, and proposes strategies for more effective and balanced decision-making in the uncertain world of imperiled newborns.

Dr. Guyer discusses long-term outcomes, children with impairments, and the ethics of offering, or not offering, palliative care as an option for marginally viable infants. Guyer gets up close and personal, and interviews key players who are asking moral questions around neonatal medicine.

The author of "Baby at Risk" says not enough time is spent talking about this issue and poses some tough questions for the reader: "What does it mean to ask a baby to suffer? What does it mean to ask the family, the parents and the siblings and the grandparents and anybody else who cares about the baby to suffer as this baby is suffering?" Guyer says parents must decide - often in the first hours or days of a baby's life - what makes sense for their child and for themselves, and then accept the consequences.

In a well written review of medical ethics since the inception of neonatal intensive care, Ruth Levy Guyer writes a compelling book. She conveys the sorrow, anger and frustration of families attempting to cope with children left with disabilities following NICU stays by utilizing interview with parents, doctors and nursing staff .The thought provoking focus of this book was on poor outcomes and gave me pause to do a lot of soul searching about my own practice and interactions with families. I think that is exactly what Dr. Guyer intended and hoped to accomplish. "

Baby at Risk is a narrative of the perils and promises of neonatal intensive care. The goal is to give a more balanced account of the "successes" of neonatology. The thesis is that with a more nuanced appreciation of the miracles and the complications, parents and physicians would make better collaborative decisions for premature infants and other children born with serious health problems that compromise the transition from fetus to infant. "

Through interviews with parents and medical personnel, Guyer investigates how high-tech pregnancies and medical interventions affect the lives of babies born at risk, their families, and society at large. "

The trials of these infants, though, do not stop at the nursery s door. How these children affect both their families and society is the subject of Ruth Levy Guyer s Baby at Risk. Guyer (a science writer who teaches bioethics at Haverford College) uses conversations with neonatal professionals, parents of prematurely born infants, and medical ethicists to present what she hopes is a realistic picture of the survivors of neonatal intensive care. "

Bioethics professor, science writer and National Public Radio commentator Ruth Levy Guyer dares to say what some may find unthinkable that the technology of modern neonatal intensive care units (NICUs) is hazardous to the long-term well-being of some newborns, who would be better off allowed to die a natural death Guyer by no means advocates shutting the doors of NICUs; she is well aware of the miracles achieved by caring doctors and nurses According to Guyer, there are no national guidelines about when and when not to take aggressive measures to maintain a newborn s life. "

Guyer says the NICU can also be a curse. A baby may be saved only to face a life of prolonged suffering. The author of Baby at Risk says not enough time is spent talking about this issue and poses some tough questions for the reader: 'What does it mean to ask a baby to suffer? What does it mean to ask the family, the parents and the siblings and the grandparents and anybody else who cares about the baby to suffer as this baby is suffering?' "

Baby at Risk: The Uncertain Legacies of Medical Miracles for Babies, Families, and Society by Ruth Levy Guyer, an NPR commentator and bioethicist, investigates the effects of high-tech pregnancies and medical interventions. "

Ruth Levy Guyer s illuminating and compelling account of neonatal medicine interweaves the stories of infants, parents, and clinicians and shows how neonatal medicine wields a double-edged sword with the power to heal, but where prognosis may be uncertain and survival may come at a dear cost in many ways. "