Lost Lullaby by Deborah Golden Alecson, University of California Press, Berkeley & Los Angeles, 1995, xii & 207 pages, $24.
Andrea Alecson was resuscitated into life having been oxygen-deprived in the womb for a length of time no one seems able to determine. Andrea was a full-term, 7 pounds 11 ounces, perfectly formed and exquisitely featured infant with massive irreversible brain damage. The author Deborah Alecson experienced two strong emotions: the desire and need to nurture her baby, and the hope that she would die. Alecson was not concerned about whether Andrea would master trigonometry one day. She and her husband were concerned about whether she would ever open her eyes and become aware of herself as a human being, "..will she ever recognize me as her momma?"
Alecson effectively recounts her harrowing experience, complete with myriad meetings with lawyers, doctors, and ethicists to sort out the legal, medical, and ethical tangles of her plight. She takes us through her pregnancy and birth to Andrea’s death at age two months when her heart simply stopped. When her child finally dies, Alecson thanks God for it, at the same time marveling at ever being grateful for such a thing. But from Andrea’s birth to her death, the reader experiences along with Alecson the varying abilities and inabilities of medical professionals. She encounters apparent failure to admit to serious medical misjudgment and error, negligent doctors and midwives, but she also finds physicians who care most about their patients and help her through her ordeal, including the highly regarded ethicist Dr. Eric Cassell who takes her call immediately and offers truly helpful counsel (Alecson was by then quite used to the busy-office-he’ll-get-back-to-you usual).
The system in general is demoralizing. "I felt sick and angry at the way the system failed us. It seemed that money was the issue, not a baby’s lost life and her parents’ grief." But her reason for writing the book (aside from healing such deep wound) is because "the legal obstacles, both real and imagined, continue to traumatize families today... Even when allowing a baby to die is the most humane and medically appropriate alternative to keeping her alive, doctors, out of fear of legal retribution or social castigation, will choose to prolong life. Consequently, they are put in the position of being unable to do what they know to be in the best interest of their patients."
This book serves as a useful source book for anyone going through a similar loss or dilemma, not just for the window into Alecson’s life, but for the reference to further books Alecson found of particular benefit, and a list of resources for parents facing such a crisis, both of which follow the main body of Lost Lullaby.
The book is a must-read for anyone who cares about how we make life-and-death decisions on the medical, legal and moral frontiers.