|Genre||Memoir (132 pp.)|
|Keywords||Abandonment, Abortion, Caregivers, Catastrophe, Childbirth, Communication, Death and Dying, Disability, Epilepsy, Euthanasia, Grief, Homicide, Human Worth, Illness and the Family, Institutionalization, Law and Medicine, Medical Ethics, Mother-Daughter Relationship, Pain, Parenthood, Rebellion, Suffering, Trauma|
|Summary|| This book chronicles a tortured parenthood during the birth and brief life of a severely brain-damaged female infant, Silvie. Doctors predict that the child will live only a few days but instead she survives for seven months. The story is told in first person by the mother, beginning with her arduous labor during a home delivery in the presence of an experienced midwife and the family physician. The baby does not cry when she is born and turns blue even with oxygen that the doctor administers. An ambulance is summoned; "a bigger, better oxygen machine" restores the baby's color and she is brought to a hospital neonatal intensive care unit where she is artificially ventilated and fed.|
In the hospital Silvie "fails" all the tests of normalcy. The doctors recommend removing artificial ventilation. "I feared, even more than I feared her death I think (and harder to admit), that they would remove the oxygen pump and the baby would live on and on and never be able to do anything at all" (14). Yet when the child does in fact breathe independently, "I took the fact that she could sustain her own breathing to mean that the baby wanted to live. It was all right to love her" (15). A few days later, however, the medical team concludes that there is nothing further they can do for the baby, that the parents should take the child home, where she will likely die within a couple of days. Upon being prodded, one physician suggests the parents give her an overdose of phenobarbital, which she is receiving for continual epileptic seizures.
At home, the parents feed Silvie by tube, medicate her, change her diapers, hold her, and learn from a friend how to swaddle her. The child never cries, does not focus her eyes on anything, rarely responds to sound or touch, and gains no weight. Whatever random responsiveness there seems to be gives the author a sense of motherhood: "I was able to survive because of my faith in these intermittent chance meetings, believing that Silvie did know when I was here and that I was holding her close in a way that meant love" (37). The parents brace themselves for Silvie's death. The husband's sister visits and councils them to actively put an end to Silvie's life, which they refuse to do. But they do not plan to take extra measures (CPR) if Silvie seems to be dying at home and when they articulate this to a social worker whom they consult to obtain respite care, it becomes clear that she would report them to Child Protective Services.
The husband quits his job as a residential counselor of emotionally disturbed teenagers to do part-time carpentry work -- he is too preoccupied to care about other people's problems. When a friend accidentally breaks the phenobarbital bottle, the parents together with the family physician decide to see how Silvie will get along without the drug. To their amazement, the baby appears slightly more alert and is able to suck from a bottle -- no more feeding tube required. But the husband reminds his wife, "The doctors warned us she might do this. This is the one and only thing she can ever learn. They said when this happened to other parents they started to believe that the baby was getting better" (59).
The parents live in limbo, attempt to live a "normal" life. When Silvie starts to lose weight at age 4 months, the doctor advises to resume tube feeding; they don't see the point, but when hospital physicians use the word, "murder," and threaten to "take over" Silvie's care, the parents relent. The baby lives but "it was the sameness of Silvie that drove you crazy . . . She slept and woke, but was awake that much different? She did not change, she did not change. Her sameness was a stone I wore, an emblem of failure, failed life" (96).
The final act for Silvie begins when the author's mother-in-law is dying of cancer in New York and a decision is made to leave the baby at home in California for several days in the care of a retired nurse. The nurse has been shown how to do the tube feeding, but while the parents are in New York she experiments with spoon feeding, then discontinues tube feeding for three days before the parents return. The parents see that Silvie has deteriorated in their absence and resume tube feeding. For the remaining couple of months the parents wait, investigate institutionalizing Silvie, and finally determine that "the way we loved Silvie meant we loved her enough to let her die" at home, with "a certain amount of fluid and nourishment for comfort, but a gradual withdrawal of excessive food. Replaced with a lot of touching and holding, stroking and whispering" (122). Silvie dies and the author is four months pregnant with the baby she and her husband have decided not to abort.
|Commentary|| This is a lyrical, well-written memoir about a nightmarish situation. The author describes well her oscillating emotions of guilt, hope, despair, resignation, and her frustration with institutional practices and legalities. The book is bound to arouse controversy. On the one hand, the situation seems hopeless and desperately sad. On the other hand, readers may question both soundness of judgment and motivation in decisions that were made by the parents. Should they have chosen home birth even though they lived an hour's drive from a hospital? And yet, there is no "proof" that the circumstances of the birth were the direct cause of the baby's brain damage. How much could this baby perceive? Was she capable of feeling pain, physical discomfort, emotional nurturing or withdrawal? The author writes, "Her senses seemed to exist, but separate from her body, without connection to her brain, which was necessary to process what the body saw, heard, felt, smelled, and tasted" (36). It seems unlikely that perception was more than reflex but since there is no reference to a medical report, the answers are uncertain.|
A curious situation arises when the parents leave Silvie in the care of a nurse while they travel to New York to be with their dying relative. The nurse takes it upon herself, apparently, to withdraw tube feeding and instead feeds Silvie with a spoon. It appears that the author did not instruct the nurse to go back to tube feeding; she sympathized with the nurse, who was hopeful that Silvie was making progress: "I listen, knowing that was the only way to survive with her. To give up hope made it impossible. You had to believe that what you did mattered" (113). Could Silvie suffer? If she did not suffer, then the (final later) decision to withdraw tube feeding and provide only minimal nourishment was motivated by the parents' sense of what was in their own emotional best interests more than what was in the best interests of the baby. But what were the best interests of the baby? Can one even discuss "best interests" for a baby that some would consider more of an organism than a human being? What qualifies as "human"? These and other questions lend themselves to discussion.
|Publisher||RDR Books/ Zenobia Press|
|Place Published||Berkeley, Calif.|
|Miscellaneous||The author is adjunct professor in the Writing and Literature Program at California College of the Arts.|
|Annotated by||Aull, Felice|
|Date of Entry||04/01/08|