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

Overview

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 ...

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Overview

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.

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Editorial Reviews

From the Publisher
“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.”

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.

“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?'”

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.

“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.”
“Ruth Levy Guyer has written a beautiful, moving, passionate account of the agonies and the joys of families that have included infants with serious, often fatal, medical problems. Just after every couple contemplating an addition is assured of how unlikely such a tragedy will be, they should read this book and begin calmly thinking about the experiences of the sometimes heroic and often desperate families who have been cursed and blessed with the births Guyer describes so vividly and compassionately. The book has to find its way to the doctors and nurses who advise these families and care for these infants.”

“Medical miracles make the news. The everyday failures of medicine do not. We owe a debt to Ruth Levy Guyer, a courageous bioethicist, for sharing the true stories of medicine’s smallest patients and their families. If policy makers, families, and medical personnel read and understood this book, decisions could be based on hard realities, not medical rescue fantasies.”

“Baby At Risk is right on target: balanced and true-to-life, touching equally on the limits, victories, and questions of a moneymaking branch of medicine. And it captures as few works have––and few in the field will still even admit––that neonatology remains rife with tunnel vision and experimentation. Every NICU parent and professional should read it.”

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Product Details

  • ISBN-13: 9781933102269
  • Publisher: Capital Books, Incorporated
  • Publication date: 10/1/2006
  • Series: Capital Currents
  • Edition description: 1ST
  • Pages: 256
  • Sales rank: 1,439,685
  • Product dimensions: 6.20 (w) x 9.20 (h) x 0.90 (d)

Meet the Author

Ruth Levy Guyer is a respected science writer, bioethics professor at Haverford College, and a regular commentator on National Public Radio’s weekend edition of All Things Considered. She has taught and written about birth, pregnancy, new reproductive technologies, cloning, genetic engineering, and many other related medical, bioethical, and social justice issues involving babies and their families. Her articles and reviews have been published in a variety of publications, including Science Magazine, the American Journal of Public Health, the American Journal of Bioethics, The Washington Post, Wilson Quarterly, and the St. Louis Post Dispatch. Ruth lives with her husband in Bethesda, Maryland. They have two grown daughters.

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Table of Contents

—The Social Value of High-Tech Interventions: At Times Life-Saving, At-Times Profit-Making
—Assisted Reproduction and Heroic Rescues of At-risk Babies, from Fertility Clinics to Neonatal Intensive Care Units
—Case Histories of Babies and their Families, both Heart-Warming and Heart-Breaking
—Motivators of Doctors and Fertility Specialists: Desire to Help or Desire to Test Technological Prowess?
—Media-Hyping of New Genetic Technologies, New Reproductive Strategies, and “Miracle Baby” Births
—Case Studies and Interviews with Doctors, Nurses, Geneticists, and Genetic Counselors
—Strategies for More Effective and Ethical Decision-making

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Sort by: Showing all of 2 Customer Reviews
  • Anonymous

    Posted November 10, 2006

    Sobering, honest look at preemie survival

    As a former NICU parent and current nursing student, I highly endorse this book. Guyer looks beyond the media hype of the premature 'miracle baby' and shows readers reality - the disabled survivors, the families in crisis - what many families of preemie survivors face following the NICU. Historical and ethical issues as well as the impact on society are presented. Most importantly, Guyer takes readers into the lives of individual families who are dealing with the aftermath of preemie and neonatal care.

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  • Anonymous

    Posted June 23, 2006

    A balanced, compelling, informative history

    I sure wish I'd had this book before my son was born. We wouldn't have necessarily done anything different, but we would have known. Known the outcomes, the history of NICUs, the risks, and the attitudes that were so often hidden from us. Outstanding work -- should be read by anyone who's ever had anything to do with neonatology. Jeff Stimpson, author of 'Alex: The Fathering of a Preemie'

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