AVEENO BABY SUNBLOCK LOTION

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

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.

Bendigo Baby Health Centre
January 1995

Art Deco-esque facade in front of a 1940s water-fall influenced design of a suburban residence. Note the recessed steel-frame windows

The building was demolished in December 1995...to make way for flower beds...a major loss of an item of social significance. Its highly prominent location at a major intersection (and carved out of urban parkland) signalled at the time of construction the importance the authorities in Bendigo afforded the issue of neo-natal and post-natal care. It's demolition shows the lack of appreciation of the importance of maintaining sites related to social heritage issues.

Scan of a print.

© Dirk HR Spennemann 1995, All Rights Reserved

In the spring of 2005 I had the privilege of working with a program called Christian Appalachia Project. A group of college students got together and repaired houses that were in desperate need. The house where my team worked had a small family cemetery at the top of hill. I went to pay my respects and say a little prayer, but I wasn't prepared to see so many tombstones like this one. (Taken in Kentucky by Sean, a CAP participant, photo enhanced by me.)

Within forty-eight hours after birth, the heel of every baby in the United States has been pricked and the blood sent for compulsory screening to detect or rule out a large number of disorders. Newborn screening is expanding rapidly, fueled by the prospect of saving lives. Yet many lives are also changed by it in ways not yet recognized. Testing Baby is the first book to draw on parents' experiences with newborn screening in order to examine its far-reaching sociological consequences. Rachel Grob's cautionary tale also explores the powerful ways that parents' narratives have shaped this emotionally charged policy arena. Newborn screening occurs almost always without parents' consent and often without their knowledge or understanding, yet it has the power to alter such things as family dynamics at the household level, the context of parenting, the way we manage disease identity, and how parents' interests are understood and solicited in policy debates.