14 of 14 people found the following review helpful:
5.0 out of 5 stars
An Incredible Book, March 6, 2001
This book was <<an epistemological adventure--how do we know what we know?--as well as a study of crippling ambition, a detective story, a courtroom drama, and a showcase for superb research and organization>> according to Frederick Busch, who reviewed it for The New York Times.
The quote above just about says it all. The book read like fiction and was carefully detailed. All of the medical terminology was easily understood and thoroughly explained. The authors stated that the theme of the book is "the emotionally-charged intersection of SIDS and infanticide."
Almost all of what we have known of Sudden Infant Death Syndrome (SIDS) for the last 20 years was based on work done by Dr. Alfred Steinschneider in upstate New York. His findings were based primarily on two children (Molly and Noah Hoyt) who died while under his care in the early 1970s, following the deaths of three of their siblings in previous years. Steinschneider thus "determined/concluded" that SIDS was familial and caused by apnea (pauses in breathing while sleeping). To combat these deaths, he pushed the use of home monitors for babies who were considered "at risk". His landmark paper in 1972 in The Journal of Pediatrics shaped medical thinking for the next 20 years. Yet he had used only a tiny sample and had no control group. This article and subsequent ones cleared peer review committees despite obvious flaws. He arranged facts to fit his theory over the next years. His fundamental deception/fabrication was that apnea episodes were documented in the hospital for the two children who died --but there was NO documentation!! In fact, Steinschneider had repeatedly ignored concerns of the pediatric nursing staff about the mother, Waneta Hoyt.
I found it incredible that a hypothesis was presented and accepted by the medical community based on only 5 cases and 2 deaths! I think this shows how desperate people were for a quick way to predict and prevent SIDS. Because of the prevalence and acceptance of this theory, Munchausen Syndrome by Prozy (when a parent, usually a mother, harms or kills a child, usually to get attention) was rarely considered when a very young child died.
In the next 20 years, the monitor business became a multi-million dollar business and many people got rich from it. Steinschneider himself never owned stock in any monitor company, but his research was underwritten by one of them, Healthdyne, whose fortunes then became dependent on the doctor's continuing research findings about apnea. A vicious circle! Also, leading SIDS researchers conducted seminars, which were funded by Healthdyne grants, then gave out information on monitors to the participants.
What particularly disturbed me was the fact that Dr. David Southall, from England, had refuted Steinschneider's theories and proven them to be false with very extensive research of his own But until the 1986 Apnea Consensus Conference, no one appeared to listen to him. This conference was the first time that Steinschneider's theory was formally investigated or questioned by an official group of his peers.
In the early 90s, a coincidental series of events led a district attorney in upstate NY to begin investigating the deaths of the Hoyt children. This led to the 1994 arrest and conviction of Waneta Hoyt for the murder of all five of her children. The authors make it clear that not only was the mother on trial for murder, but that Steinschneider's theory was also on trial.
The trial's outcome demonstrated that the entire premise for SIDS for the last 20 years was false. In the words of several prominent pediatric forensic specialists: if there is one infant death in a family, it is probably SIDS. Two deaths should be considered suspicious. Three deaths are homicide.
What was especially shocking to me was the information in this book about Massachusetts General Hospital's SIDS program. Mass General had positioned itself as "the" place to bring babies thought to be "at risk" for SIDS. Yet the program, run by Drs. Kelly and Shannon, disciples of Steinschneider, was governed by a false, 20- year-old theory. The pediatric department had had a long history of ignoring suggestions of child abuse, some of it fatal, when a young doctor named Tom Truman arrived for a research fellowship in pediatric critical care. Truman secretly investigated all of the deaths of children who were "at risk" and found that in 155 deaths which occurred after multiple "events" (instances of unconsciousness, etc.), Munchausen Syndrome by Proxy was never considered, even in one family when the "events" stopped after the children were placed in foster care.
The authors said: "In the Shannon-Kelly team, some [abusive] mothers found the allies they needed. In their babies, the doctors found the data they needed. Locked in this symbiosis, Mass General appears to have become a Munchausen haven, while contaminating the research of SIDS with highly dubious data."
I would highly recommend this book not only for its interesting subject matter but because it was so well done. The meticulous and documented research was presented in a scholarly yet easily-understood manner.
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6 of 6 people found the following review helpful:
5.0 out of 5 stars
The perfect true crime book, April 26, 2004
I can't say enough how much I enjoyed this book. I came across a mention of the Hoyt family and this book while reading Michael Kelleher's "Murder Most Rare" (another really good read), and decided to order it. From page one, I was hooked.
It starts with a case of familial infanticide, then explores the earlier Hoyt case that was so important. The best part about the book is when the authors leave the Hoyt case and take us on a detailed tour of the history of SIDS and apnea. The very scientific and potentially dry discussion of research projects is told in a way that leaves you with the feeling that you really understand what is going on in the SIDS research arena, and you also feel like you know each player in this community. When the story turns back to the Hoyt case and its conclusion, the reader fully undertands the what, why, and how of the events. Without the exploration of the history of SIDS, the ending of the story would have much less impact. I didn't realize until I was finished just how personal the book had become for me. I went immediately online to Amazon and typed "Munchausen by Proxy" in the search bar.
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