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Synopses & Reviews
Andrea Alecson was resuscitated into life having been oxygen deprived in the womb for a length of time no one seems able to determine. She was full-term, weighing 7 pounds 11 ounces: a perfectly formed and exquisitely featured infant with massive irreversible brain damage. With the birth of Andrea, Deborah Alecson experienced two strong emotions: the desire and need to nurture her baby, and the hope that she would die. This was Deborah's initiation into motherhood: a time of intense vulnerability. She had just survived the emergency Caesarean section that pulled her daughter blue from her body, too late, too deprived of oxygen for too long. Lost Lullaby told in a mother's voice, is the story of Andrea's two months in a neonatal intensive care unit and of the greater issues that her fragile life exposed: dilemmas of medical technology, family rights, and the ambiguity of the law. While experiencing anguish over their child's condition and the uncertainty of her future, the Alecsons were further traumatized by the fight to obtain power over that child's destiny. It was their wish that nature, not technology, be Andrea's guide. They viewed her as already dying and wanted that process to be respected. This fight was one of many waged throughout this country that have pitted family members of injured loved ones against legally restrained hospital personnel. Lost Lullaby also describes the securing of a lawyer to sue the hospital, midwife, and obstetrician for alleged malpractice. Ms. Alecson was to learn that a lawsuit posed yet another moral dilemma: Andrea being kept alive meant a potentially huge monetary award, while Andrea's death would mean a negligible one. During those two months, Ms. Alecson spoke with lawyers, doctors, and ethicists to understand the legal, medical, ethical implications of her plight. In telling Andrea's story, she recounts those discussions and describes some legal cases that had a direct bearing on the Alecsons' situation. Lost Lu
"By describing her family's encounters with the hypocrisy and cruelty surrounding the care of imperiled newborns, Alecson adds a powerful voice to those calling for a restoration of the rights of parents as decision-makers and for compassionate restraints on the use of neonatal life support technology."—Helen Harrison, author of The Premature Baby Book
"A searing account of a mother's encounter with a new, frightening, and misguided victim of American medicine: The prolongation of the life of a severely brain-damaged newborn infant is a good that trumps all other considerations. This gripping story should remind us all of C. S. Lewis's chilling insight: "Man's power over Nature is really the power of some men over other men, with Nature as their instrument."—William A. Silverman, M.D., Columbia University
"With disarming honesty, wry wit, and extraordinary precision, Deborah Alecson reveals that surreal, shadowy place known only to parents who have delivered a sick baby. Lost Lullaby is an act of faith, and one can see its creator growing wiser as her story unfolds—to give the reader not only indispensable information but also solace and strength."—Roberta Silman, author of Blood Relations, Beginning the World Again, and other novels
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.
About the Author
Deborah Golden Alecson is a freelance writer and poet who lives with her husband and son in Hartsdale, New York.
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