Lost Lullaby: Deborah Alecson 1995

By Deborah Golden Alecson
Published by University of California Press, 1995
ISBN 0520088700, 9780520088702 207 pages

From Google Books. "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.
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 Neonatal ICU, 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."
This is an important book -- a must read. It is difficult and painful because it looks at issues that are usually glossed over. Can be obtained from abebooks.com DJE

Heartsounds by Martha Lear (1980)

A moving account of a medical drama and a medical failure records the observations of surgeon Harold Lear, who, stricken by a series of coronaries, endured open-heart surgery and mysterious postsurgical complications before dying. Poignant and moving. A heard book to read, but an important one.

Abebooks.com carries this title starting at one dollar plus shipping.

Lost Lullaby: Deborah Alecson 1995

From UC Press Material:
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.

Can be purchased inexpensively at AbeBooks

Wrongful Death: A Medical Tragedy by Sandra Gilbert (1995)

This is an angry, chaotic story of a man who died, written by his wife, an author and a poet. At times, hard to read, but all the more important, because it documents the disconnects between patients and their families and doctors.
On February 10, 1991, Elliot Gilbert, a sixty-year-old professor of English, checked into a major medical center for routine prostate surgery. Twenty-four hours later, he was pronounced dead in the recovery room. No one from the hospital has ever told his family how or why he died. In Wrongful Death his widow has produced a searingly frank account of one family's experience with a kind of medical disaster that occurs surprisingly often but is all-too-rarely discussed in a political arena dominated by concerns about the escalating costs of malpractice insurance. As her story unfolds, Sandra Gilbert describes the numbing shock into which she and her children were plunged by her husband's inexplicable death as well as the stages of grief they endured as they struggled to come to terms with their loss. But her major focus is on the process of discovery through which, with the help of friends and lawyers, they began to learn something about what had happened to Elliot. What are the implications of such a medical tragedy for the deceased and for his survivors? How does it feel to confront the possibility that a loved one has suffered what the law calls a "wrongful death"? As she examines the bewildering complexity of the legal, social, and medical questions surrounding "adverse events" like the one that killed her husband, Gilbert shows how vulnerable we all are to the power of the health-care establishment.
This book can be bought for $1.00 plus shipping from ABE Books.