Lost Lullaby

by Deborah Golden Alecson, Bruce Jennings (Foreword by)

Overview

Lost Lullaby makes one think the unthinkable: how a loving parent can pray for the death of her child. It is Deborah Alecson's story of her daughter, Andrea, who was born after a full-term, uneventful pregnancy, weighing 7 pounds 11 ounces, perfectly formed and exquisitely featured. But an inexplicable accident at birth left her with massive and irreversible brain damage. On a vitality scale of one to ten, her initial reading was one. And so begins Deborah Alecson's heart-rending struggle to come to terms with two desperately conflicting and powerful emotions: her desire to nurture and love Andrea, and her desire to do everything in her power to bring about her death. Told in a mother's voice, with a simplicity and directness that heighten the intensity of the drama that unfolds, Lost Lullaby reaffirms the human dimension of what is too often an abstract and purely theoretical discussion. During the two months that Andrea spent in the Infant Intensive Care Unit, Ms. Alecson spoke with lawyers, doctors, and ethicists in an effort to understand the legal, medical and ethical implications of her plight. She recounts those discussions and describes legal cases that have a direct bearing on her own situation. Her battle-both in coming to the agonizing decision to let her child die and in convincing the medical and legal establishments to respect that decision-will engender empathy for the plight of many families, and an awareness of the need to use medical technology with restraint. It is a must-read for everyone who cares about how we make life-and-death decisions on these new medical, legal, and moral frontiers.

Product Details

ISBN-13:	9781623520700
Publisher:	Deborah Golden Alecson
Publication date:	10/15/2014
Pages:	222
Product dimensions:	6.00(w) x 9.00(h) x 0.51(d)

About the Author

Deborah Golden Alecson is a thanatologist and adjunct professor. She designed and teaches a course in medical humanities for the School of Liberal Arts at Excelsior College. She has taught "Ethics of Health Care," "Death, Dying and Bereavement," "Spirituality in Life Transitions," and "The Sociology of Health and Illness" for the Schools of Health Science and Nursing at Excelsior College. She has created a course in thanatology that she teaches for Williams College during their Winter Study semester. She writes a monthly newspaper column called "Musings on Mortality." She lectures on and writes about dying well in a death-phobic culture as well as other topics. Her website is: http://www.deborahgoldenalecson.com/

Director of Bioethics, Center for Humans & Nature

Editorial Reviews

Readers will at least respond to Alecson's plight in trying to arrange for the death of her severely brain-damaged infant daughter, if not to Alecson, for the tediously self-dramatizing, self-involved author, as her own mother is quoted here as observing, is given to ``obsessing.'' As a result, her book fails to make a worthy contribution to the right-to-die debate. Andrea was born in an unidentified Manhattan hospital under the care of a midwife and an obstetrician who performed an emergency cesarean section on the author. She and her husband, Lowell, a high school teacher, soon learned that their daughter, who suffered perinatal asphyxia, was hopelessly disabled. Although the couple signed a do-not-resuscitate order, they also requested that food and water be withheld from Andrea. Because the federal Baby Doe Regulations of 1983 established that providing nutrition is ``customary medical care,'' the hospital refused the parents' pleas. Then, two months after her birth, Andrea's heart stopped, causing the Alecsons' attorney to resign from their negligence suit as insufficiently remunerative; another attorney negotiated a settlement for an undisclosed sum. We're not told when these events occurred. (Mar.)

Publishers Weekly - Publisher's Weekly

Following an ideal pregnancy, freelance writer and poet Alecson encountered problems during the delivery of her daughter that caused the baby to suffer a loss of oxygen. Here, Alecson shares her personal struggle with the decision to allow her physically impaired infant to die peacefully. The author is refreshingly honest as she describes her thoughts during the difficult period following the birth. Readers will clearly feel Alecson's emotions: anticipation of a normal birth, anger and frustration at the inability to find answers to her questions, initial hope that her daughter will survive, and eventually fear that her daughter will live a painful, incomplete life. General information is given on the legal and medical problems that can arise during childbirth, and a brief supplemental section lists useful resources for families facing a similar ordeal. Though clearly biased in favor of the right to die, this poignant book is certainly thought-provoking. A worthwhile addition to any medical ethics collection.-Tina Neville, Univ. of South Florida at St. Petersburg Lib.

Library Journal