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.
Synopsis
"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
Publishers Weekly
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.)