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LETTERS

LETTERS To the Editor: Dr. John Scanlon spoke at a recent meeting sponsored by BIRTH protesting the barbarism of surgery without anesthesia for newborn babies and has written on the subject ( I ) . Ten years ago our prematurely born son, Edward, was shunted for hydrocephalus while paralyzed with curare. Although he could not move, cry, or react in any way, he could see, hear, and feel as large incisions were cut in his scalp, neck, and abdomen; as a hole was drilled in his skull; as a tube was inserted into the center of his brain, then pushed down under the skin of his neck, chest, and abdomen and implanted deep in his abdominal cavity. It is a source of great anguish to me that my husband and I signed a form allowing such an operation to take place, but we were told Edward might die or become brain damaged without the operation and that anesthesia might kill him. “Besides,” the doctors assured us, “these babies don’t really feel pain.” I suspected then, and now know, that this is just not true. To this day, our severely retarded son will allow no one to touch his head, neck, or abdomen. Even heavily tranquilized, he reacts to the simplest medical procedures or the mere sight of the hospital with violent trembling, profuse sweating, screaming, struggling, and vomiting. I can’t help feeling that on some level he still remembers the hideous pain inflicted on him during his unanesthetized surgery and throughout the course of his neonatal intensive care. Shortly after Edward came home from the hospital, I began work on a book for parents of premature babies. Several doctors and nurses I interviewed admitted that surgery without painkillers was sometimes necessary for those babies “too weak to survive anesthesia.” However, the majority of parents I interviewed seemed unaware of this practice. AIthough I now regret it, I decided against mentioning surgery without anesthesia in my book. At the time, I was unable to document its occurrence or determine its extent, and I was concerned about upsetting parents, perhaps needlessly. In any event, what could parents do with this information? One mother I spoke with who realized anesthesia would not be used for her daughter’s surgery refused to sign the consent form. The operation was performed anyway and the mother was reported to local authorities as an abusive parent. Since the publication of my book in 1983, I have learned that premature infants are commonly subjected to major surgery and other excruciating procedures without any pain relief whatsoever, and that the reasons used to justify these practices are of dubious validity. Other parents are also finding out what was done to their children and they are outraged. At the 1985 national conference of Parents of Premature and High-Risk Infants, I joined a group of mothers and fathers who were discussing their children’s painful NICU care: major surgery, chest tube insertions, cutdowns (all performed without painkillers); gangrene and amputations from infiltrated IVs; bones broken during chest physiotherapy; skin pulled off with adhesive tape; burns from the monitors; 24hour-a-day bombardment with bright light and loud noise; and numerous iatrogenic afflictions from improperly evaluated therapies. “If this were going on in any other setting,” one mother exclaimed, “it would be called torture!” Another parent noted the similarity between the aversive behavior of some NICU babies and the psychologic problems of adult torture victims. Another added that if these procedures were carried out on kittens and puppies instead of human babies, antivivisectionists would close down the nurseries. None of us believed that we had been adequately informed about the immediate or long-term suffering our children would endure. Most of us doubted that we would consent to such medical ordeals to save our own lives. In the past two decades, a great deal has been written about parents as abusers of their premature babies. The time has now come for a long, hard look at the medical abuse of newborns, especially of those babies unfortunate enough to be born prematurely. Helen Harrison I144 Sterling Avenue Berkeley, California REFERENCE Scanlon JW. Barbarism. Perinutd Press 1985:9: 103. To the Editor: Imagine that your baby needs major surgery. You admit him to a major teaching facility with a solid reputation. Feeling foolish for even asking, you question several doctors about anesthesia. The surgical resident who brings you consent forms promises your baby will be put to sleep, and you sign. Imagine finding out later that your son was cut open with no anesthesia at all. This is not a cut-and-slice horror movie. This is my life; the hospital is Children’s Hospital National http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Birth Wiley

LETTERS

Harrison, Helen
Birth , Volume 13 (2) – Jun 1, 1986
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Publisher
Wiley
Copyright
Copyright © 1986 Wiley Subscription Services, Inc., A Wiley Company
ISSN
0730-7659
eISSN
1523-536X
DOI
10.1111/j.1523-536X.1986.tb01023.x
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Abstract

To the Editor: Dr. John Scanlon spoke at a recent meeting sponsored by BIRTH protesting the barbarism of surgery without anesthesia for newborn babies and has written on the subject ( I ) . Ten years ago our prematurely born son, Edward, was shunted for hydrocephalus while paralyzed with curare. Although he could not move, cry, or react in any way, he could see, hear, and feel as large incisions were cut in his scalp, neck, and abdomen; as a hole was drilled in his skull; as a tube was inserted into the center of his brain, then pushed down under the skin of his neck, chest, and abdomen and implanted deep in his abdominal cavity. It is a source of great anguish to me that my husband and I signed a form allowing such an operation to take place, but we were told Edward might die or become brain damaged without the operation and that anesthesia might kill him. “Besides,” the doctors assured us, “these babies don’t really feel pain.” I suspected then, and now know, that this is just not true. To this day, our severely retarded son will allow no one to touch his head, neck, or abdomen. Even heavily tranquilized, he reacts to the simplest medical procedures or the mere sight of the hospital with violent trembling, profuse sweating, screaming, struggling, and vomiting. I can’t help feeling that on some level he still remembers the hideous pain inflicted on him during his unanesthetized surgery and throughout the course of his neonatal intensive care. Shortly after Edward came home from the hospital, I began work on a book for parents of premature babies. Several doctors and nurses I interviewed admitted that surgery without painkillers was sometimes necessary for those babies “too weak to survive anesthesia.” However, the majority of parents I interviewed seemed unaware of this practice. AIthough I now regret it, I decided against mentioning surgery without anesthesia in my book. At the time, I was unable to document its occurrence or determine its extent, and I was concerned about upsetting parents, perhaps needlessly. In any event, what could parents do with this information? One mother I spoke with who realized anesthesia would not be used for her daughter’s surgery refused to sign the consent form. The operation was performed anyway and the mother was reported to local authorities as an abusive parent. Since the publication of my book in 1983, I have learned that premature infants are commonly subjected to major surgery and other excruciating procedures without any pain relief whatsoever, and that the reasons used to justify these practices are of dubious validity. Other parents are also finding out what was done to their children and they are outraged. At the 1985 national conference of Parents of Premature and High-Risk Infants, I joined a group of mothers and fathers who were discussing their children’s painful NICU care: major surgery, chest tube insertions, cutdowns (all performed without painkillers); gangrene and amputations from infiltrated IVs; bones broken during chest physiotherapy; skin pulled off with adhesive tape; burns from the monitors; 24hour-a-day bombardment with bright light and loud noise; and numerous iatrogenic afflictions from improperly evaluated therapies. “If this were going on in any other setting,” one mother exclaimed, “it would be called torture!” Another parent noted the similarity between the aversive behavior of some NICU babies and the psychologic problems of adult torture victims. Another added that if these procedures were carried out on kittens and puppies instead of human babies, antivivisectionists would close down the nurseries. None of us believed that we had been adequately informed about the immediate or long-term suffering our children would endure. Most of us doubted that we would consent to such medical ordeals to save our own lives. In the past two decades, a great deal has been written about parents as abusers of their premature babies. The time has now come for a long, hard look at the medical abuse of newborns, especially of those babies unfortunate enough to be born prematurely. Helen Harrison I144 Sterling Avenue Berkeley, California REFERENCE Scanlon JW. Barbarism. Perinutd Press 1985:9: 103. To the Editor: Imagine that your baby needs major surgery. You admit him to a major teaching facility with a solid reputation. Feeling foolish for even asking, you question several doctors about anesthesia. The surgical resident who brings you consent forms promises your baby will be put to sleep, and you sign. Imagine finding out later that your son was cut open with no anesthesia at all. This is not a cut-and-slice horror movie. This is my life; the hospital is Children’s Hospital National

Journal

Birth – Wiley

Published: Jun 1, 1986

References

  • Barbarism
    Scanlon, Scanlon