Correspondence between the SIDS Alliance national office and the authors of The Death of Innocents

Attached is the correspondence between the SIDS Alliance national office and the authors of The Death of Innocents. In light of the recent postings, we thought this might be of interest.

Rather than taking to task SIDS parents for expressing their legitimate concerns over recent media reports, authors Firstman and Talan should direct their contempt toward their fellow reports for "inaccurately" portraying the contents of their book. Firstman and Talan are not neophytes to the media--but are part of it! As writers and reporters for Newsday, they more than most, should know the extent to which their colleagues might twist, misrepresent, and sensationalize this issue. If nothing else, this "misrepresentation" shouldn't help create added interest in their book.

One key factor glaringly omitted from The Death of Innocents, is recognition of the role played by the SIDS Community in advocating for mandatory autopsies and thorough, standardized death scene investigations for all sudden and unexplained infant deaths, the handful of cases, such as those cited by Firstman and Talan, would not "fall through the cracks."

Their e-mailed responses to Dana appear to be far more geared towards generating additional book sales than a sincere, concerned effort to set the record straight.

Judith S. Jacobson
Executive Vice President
SIDS Alliance

September 15, 1997

Phipps Cohe
National Public Affairs Director
SIDS Alliance

Dear Phipps:

We have followed the comments you've made in the last week to reporters writing stories about the publication of our book, The Death Innocents. Whereas your remarks were reasonable and on-target in the first few days, we are concerned by what we detected to be an increasing note of frustration and anger as the week wore on. We understand your position and are not surprised that you are dismayed by what you perceive to be the book's contents. We also recognize that you were unprepared for it and had to react quickly. However, we feel it is vital that you read the entire book before making any judgments beyond the obviously correct statement that homicides make up a very small percentage of reported SIDS cases, and that parents should not be routinely suspected. When you read the book, you will see that we ourselves make that point emphatically, and that we are very sensitive to SIDS parents. In particular, there is a two-page Afterword at the end of the book that addresses this issue.

We urge you to be responsible in commenting on the work of Dr. Thomas Truman. A story in the Boston Herald quotes you as attacking his work in such a way that makes clear that you have no understanding of his research. He did not focus on SIDS cases in his study, but on so-called "near-misses." Your statement that these "near-SIDS" cases should not be mixed in with actual SIDS cases is absolutely correct. Unfortunately, your comments, if quoted accurately, imply that Dr. Truman's study does mix the two together. It doesn't. His 56 suspicious cases were those of babies who were admitted to Mass General after repeated reports of life-threatening episodes that were witnessed by only one person and were never medically substantiated. As we explain in the book, a number of the cases were what Dr. Truman considered "grossly" suggestive of the well documented pattern of Munchausen by proxy syndrome. As it turned out, his sampling included three infants who went on to die, with the cause attributed to SIDS; each had a case history that he considered suggestive of Munchausen-by-proxy behavior. We suspect your quotes may have come in response to the reporter's misrepresentation of Dr. Truman's findings (We've unfortunately seen much poor reporting in the past week). Again, to avoid uninformed comments, we'd urge you to read the book. It's clear to us and many other people that Dr. Truman has very responsibly--and very courageously--tried to determine how commonly infant abuse may have occurred in the experience of one major institution, and how well doctors at this institution responded to it. As he has said repeatedly,. he has no hard proof in any of these cases: He is not a detective, and all he saw were medical records. His point was that there were enough red flags in these cases to warrant further exploration by people who are expert in ferreting out cases of child abuse. Obviously this is extremely treacherous territory for all kinds of reasons, but after many interviews with Dr. Truman over the course of a year, we concluded that he is a cautious and credible man whose only interest in this is the welfare of babies. We assume you share that interest.

Though you may feel that cases such as the ones we write about "sensationalize" the issue, we ask you not to imply that we sensationalize the issue in our book. If you read it, you will see that this is not the case. Many people who have read the book--from the reviewer for The New York Times (enclosed) to Pediatrics editor Jerold Lucey and other physicians--believe we tell the story exactly right, that we balance the feelings of SIDS parents against the need to protect babies from abuse, and that it is a book with some important lessens about the process of medical science. (In a review in next month's issue of Pediatrics, Dr. Lucey urges all pediatricians to read it.) He and many other physicians, including Molly Dapena and Bruce Beckwith, recognize that it tackles many important scientific, medical and legal issues, and that it may well help save countless babies from being murdered or abused by their parents.

We know that the book gives you a lot to deal with as the SIDS Alliance's public affairs director. We know it will be painful for some of the people you represent. This is unfortunate. But that is the reality of the situation. Your work and that of SIDS workers everywhere is extremely important. But it doesn't mean that the work of those who focus on child abuse is any less relevant, vital or reputable. As we say in our Afterward, it is a balancing act for all of us.

In the hopes that you gain a full understanding of the book we have written, we have asked our publisher to overnight a copy to you. We would be glad to speak to you about the issues we raise in this letter at any time.

Sincerely,

Jamie Talan and Richard Firstman

September 25, 1997

Dear Mr. Firstman and Ms. Talan:

Phipps Cohe has passed along to me your letter of September 15, 1997 in which you express concern over recent statements made to the media by the SIDS Alliance. As I am sure you can imagine, we have been barraged by media to reply to allegations linking Sudden Infant Death Syndrome with child abuse. We have responded to these inquires both as advocates for SIDS families and as a reliable source of current medical knowledge about SIDS in our usual thorough and responsible fashion.

You are correct in your assessment that we were dismayed by what was being presented as the contents of your book. Certainly, if you had provided the SIDS Alliance with an advance copy of the book to review, we would have been able to address specific copy blocks rather than respond to reporters' interpretations of these issues. I would like to believe that it was merely an oversight to not send us an advance copy. However, the often repeated journalists' astonishment and consternation with the SIDS Alliance's ability to generate a groundswell of public concern for accurate and balanced reporting of SIDS issues -- such as with Eye to Eye with Connie Chung --leads me to believe that this may have been a deliberate omission.

As I am sure you are aware, SIDS Awareness month is celebrated each year in October. This is a time of public acknowledgment of the SIDS tragedy; an opportunity to present the latest medical facts about SIDS prior to the onset of the colder, higher SIDS incidence months; and a period of increased SIDS education and fund raising initiatives throughout the country. Is it purely a coincidence that your book's release coincides with SIDS Awareness Month? I can only speculate on the impact the current media reports based on your book will have on local awareness and fund raising efforts. Under the circumstances, your stated concern for the feelings of SIDS parents rings somewhat hollow.

The SIDS Alliance comments concerning Thomas Truman 's claims are no different than any other statements made by the Alliance about unpublished "results." To paraphrase the movie Jerry McGuire, "Show us the data." Without a published study that has been scientifically scrutinized for assumptions, methodology and data analysis, Truman's assertions remain mere allegations, or worse, reporters' interpretations of allegations. Based upon your letter, we understand that 3 of the 155 cases reviewed by Truman went on to die and were classified as SIDS. This is certainly a far cry from the more than 1/3 " of SIDS cases that the media has reported Dr. Truman linking with child abuse. The timeframe from which Dr. Truman's data was collected is also vital to interpret his contentions -- the definition of SIDS and the standardized practice of autopsies and death scene investigation have changed radically over the past two decades. In addition, while he ultimately settled on 155 cases of "near-miss" events, 56 of which he claimed may have been abuse-induced, what was the total population of babies admitted to the hospital for "near miss" episodes during the period he was studying? I am sure that it was substantially higher than 155, placing even less statistical significance on the number of infants incorrectly signed out as SIDS.

Do not misinterpret what I am saying... every baby deserves a future. Few people are as fervent about this sentiment as SIDS families. We have never denied the existence of Munchausen syndrome by proxy, nor the rare and aberrant instances where parents have used SIDS to mask abuse. In fact, the SIDS Alliance has led the charge to require implementation of mandatory autopsy legislation and standardized, thorough death scene reviews. We have served side-by side with child protection advocates on infant Mortality Review Teams to ensure adequate investigations to confirm instances of SIDS, child abuse, or other causes of death. Unfortunately. these efforts are oddly overlooked in your book. I now because I have thoroughly read it, thanks to the consideration of a Washington Post reporter who received multiple advance copies.

I acknowledge that you have recognized the potential harm the book may cause SIDS parents and you do make the statement that the majority of SIDS cases are not child abuse. However, that caveat is glaringly omitted from the book's press materials and certainly has not surfaced in its promotion. I realize that sensitivity rarely makes good copy or good sales.

It is painful for the thousands of legitimate SIDS parents across this country to be continuously subjected by the media to disproportionate reports of the isolated cases that have somehow fallen through the cracks in the medical examiner system. If as much media attention was given to promoting the "Back to Sleep" campaign as has been given to sensationalizing aberrant behavior, the journalistic community could instead become instrumental in further decreasing the rate of babies dying from Sudden Infant Death Syndrome. Not only does media coverage such as this hurt SIDS parents, it also disrupts the scientific momentum in a way that is far more damaging than scientific theories which may or may not fully pan out.

Your attack on the apnea theory and the monitoring industry, while central to your book, is peripheral to the SIDS Alliance. Apnea was one of several theories being hypothesized and studied for its link to SIDS. When you begin with a medical mystery and a catch-all phrase to define it, particularly at a time when "normal" has yet to be determined, any disease becomes a process of elimination and any reasonable theory should be evaluated. As with many disease entities, some theories provide more productive results than others.

An indictment of the monitoring industry for providing technology to pursue scientific investigation is absurd, and the charge that it failed to prevent SIDS deaths is comparable to criticizing mammograms for failing to prevent breast cancer. These are diagnostic tools to detect potential problems, not preventions. Science and technology often go hand-in-hand; one can only imagine where cancer, heart disease, diabetes, cystic fibrosis, muscular dystrophy and other diseases would be without the involvement of business and industry; both in terms of innovation and funding. To hold monitoring to a higher standard than mammography or CAT scans is unfair.

Twenty-five to thirty years later, it appears that apnea accounts for only a small percentage of babies that die of SIDS. More than anything else, what the apnea theory did accomplish was to serve as a catalyst to create excitement in the medical community to pursue areas of SIDS research, and to establish the notion that SIDS babies were somehow not normal. It is now almost universally believed that most SIDS infants truly do have subtle defects that play a role in their breathing, heart rate, arousal and death. Over the past three decades SIDS research has focused not only on respiratory function but also on cardiovascular, metabolic, neurologic, physiologic, pathologic and environmental theories. To read your book, it is as if these other theories never existed nor were vigorously pursued.

Unfortunately, SIDS still remains a medical mystery; through research and education -- not sensational news reports -- we may be able to solve it. Programs such as Hannah Kinney's brainstem research at Harvard are expanding our knowledge of Sudden Infant Death Syndrome and may lead to an ultimate cure; the "Back to Sleep" campaign is alerting parents to lifesaving interventions that have already reduced the number of babies dying from SIDS. Based upon your stated concerns for SIDS families, I encourage you to consider dedicating a portion of the proceeds raised through the promotion and sale of your book toward the advancement of SIDS awareness and research efforts.

I would also like to invite you to participate in the SIDS Alliance National Conference to be held in Dallas, Texas on November 15-17. The issues that you raise in your book are of great interest to the SIDS community. As scientific journalists, your perspectives on the media's responsibility in reporting accurate and balanced SIDS information would be extremely useful to our constituency. I truly hope you will consider speaking at our conference.

Sincerely,

Judith S. Jacobson
Executive Vice President