Abuse vs. SIDS

9/12/97

Warning! The following may be upsetting to you - it was to me.

I have had 3 people bring to my attention an article that appeared in a recent news report. I am so upset. Reports like this make the news, and it seems that it brings anyone who had a baby die of SIDS under suspicion. We loved our baby so much, and it really hurts when reports like this make the news. Our baby was at a sitters when he died. Should we now look at the sitter with suspicion? Does this mean that if there is not a medical cause that it must be foul play? I am so upset!

Did anyone else see this?

It was on the front page of the Boston Globe on Tuesday. Aviva and Nathaniel see the specialist at Mass General (one of 2) that the authors accuse of ignoring child abuse (Dr. Daniel Shannon). Tuesday afternoon I got a phone call from someone at a local TV channel and they asked me to be a participant on a talk show that evening about this.

It turns out that the authors of the book keep referring to "near-SIDS" a lot. I said that it doesn't exist. They seem to be confusing SIDS and apnea (and seem to use the terms interchangeably). I said, on the TV show, that I cringed when I read the morning paper, with headlines like SIDS is actually child abuse, etc. I said that SIDS parents did not need a new witch hunt started, because of misleading articles like this.

The man who made the report (Dr. Trueman), says that while he worked at Mass General, there "were several cases" where the parents repeatedly brought in more than one child, some of them covered with bruises, and said they stopped breathing. The 2 doctors refused to think that it might be child abuse and report the parents, and some of these children later died. He says that Drs. Shannon and Kelly believe in the possibility of more than one SIDS death in the family, and refused to believe that these might be cases of child abuse.

I was very upset to see Near-SIDS equated with SIDS, and I certainly think all of us would realize that these are different things, but no one reading the article would know that.

I think that all the suspected child abuse cases that they talk about involve multiple deaths in a family. I certainly don't believe that 1/3 of SIDS cases are child abuse, while I believe child abuse might rarely be called SIDS, I personally would be surprised if it was more than 1-2%. That's all we all need is to see these kind of statistics, to ruin the day for all of us!

It was interesting being on the TV show. No one involved with the show (the other participants) believed these statistics, and they all complained about confusing SIDS and apnea.

It really is horrible when I have to wake up in the morning, to headlines and articles like this, and know that the whole day is going to be defending myself.

Dana

Dana (Dana.Siegel@zhora.com)
mother to David (4/30/89-5/20/91), Aviva (2/5/92) and Nathaniel (2/28/97)

From: "Dana B. Siegel" <dana.siegel@zhora.com>
Date: 9/29/97
Subject: The book THE DEATH OF INNOCENTS

I just got this e-mail, from the people who wrote this book. I think they
seem to have a decent job of explaining what their book is about. Too bad
that the media seems to put the most sensational things in the headlines.

Dana

From: Jtalan3K@aol.com

Date: Sat, 27 Sep 1997
To: Dana.Siegel@zhora.com
Subject: THE DEATH OF INNOCENTS

Dear Ms. Siegel,

We are the authors of the book "The Death of Innocents,'' the subject of your posting of 9/12. We understand and appreciate that the issues we raise in the book are painful for you and other SIDS parents. But it's important that you be informed about what is and what is not in the book. Your posting, unfortunately, contained a number of errors and misrepresentations that need to be corrected. These are obviously the result of your not having read the book.

We agree with you that near-SIDS probably doesn't exist, and that, in any event, it should not be associated with actual SIDS. This comes through clearly in the book. In fact, we write at some length about the myth of near-SIDS and how it has clouded perceptions about SIDS for many years. If you read the book, you will also learn how all this started.

You say we confuse SIDS with apnea, that we use the terms interchangeably. This is a profound misrepresentation of our book. That apnea has nothing to do with SIDS is one of the fundamental principles of the book. We devote some 200 pages to examining how the apnea theory misled doctors, parents and others into believing apnea and SIDS were one and the same--and how it has preyed upon SIDS parents by misleading them into believing that their next babies are at greater risk (they're not) and that home apnea monitors can save them (they can't). That theory has been thoroughly discredited, though your Dr. Shannon at Massachusetts General Hospital hasn't seemed to notice this. In a statement put out in the wake of the controversy surrounding our book, MGH referred to "apnea and other SIDS-associated conditions.''

The point of our book is not to suggest that SIDS is frequently child abuse. Certainly, neither we nor any credible medical authorities think that one-third of SIDS cases are murders. This is a notion you seem to have inferred from the work of Dr. Thomas Truman. Again, you are uninformed about what it is he found, or even what he was looking for. His study was not of SIDS, but of supposed near-misses. He wanted to see how many of these cases through the years at MGH might have been Munchausen by proxy, and he wanted to see how well the doctors at MGH responded to it. Unfortunately, some press accounts triggered by the publication of our book have been misleading, confusing Truman's study with SIDS. As readers of our book come to understand, these are all related pieces of a large and complicated puzzle.

We are careful to say, very emphatically, that only under a limited number of circumstances should foul play even be considered in SIDS cases. Multiple deaths in a family is the major one. The single, classic SIDS should be handled with compassion, parents held utterly blameless. There is no doubt that homicides account for a small percentage of SIDS cases. How small, no one knows, but the range of estimates is 2 to 10 percent, with 5 percent the most frequently cited figure. Again, we understand how painful this issue is for SIDS parents, but this discomfort must be weighed against the lives of babies who are at risk of being murdered by their parents. We have heard from many SIDS parents who realize the importance of the issues we raise. Perhaps you saw the quote in the Boston Globe from the police chief in Wellesley who is a SIDS parent himself. Like all SIDS parents, he cringes when he hears about this, but says, "in my heart of hearts, I know we owe it to the kids to investigate these cases. If we don't, shame on us.'' Mary Dore wrote to us to say what a responsible, important and ''courageous'' book we have written. Mary Dore is the founder of the SIDS movement. She lost her baby daughter in 1961.

We hope you will correct the erroneous impressions you've created by posting this response. In addition, we ask any SIDS parents who are confused by the media accounts to e-mail us and we will try to clarify the false information and impressions that seem to be spreading.

We are so sorry that your baby died of SIDS. Our hope in writing this book is to somehow get the infanticide statistics out of the SIDS statistics. We know you share in this wish. Please take the time to read our book so that you can better inform others.

Sincerely,
Jamie Talan and Richard Firstman
E-MAIL address: JTalan3K@aol.com

p.s. We would be happy to answer any questions your website visitors have about our book -- and the issues in general.

Date: Sat, 27 Sep 1997
From: Lee Tanenbaum <lth1@dhr.state.ga.us>
Subject: Re: Media Alert -Reply

I agree that the current spate of publicity is quite upsetting. However, I think we should try to use this as an opportunity to educate. I think part of the problem is that indeed in some localities infant deaths are termed SIDS without autopsy, proper death scene investigation, and review of the clinical history. We need to make sure that professionals realize the importance of conducting a thorough death scene investigation and in a way that is compassionate to parents. I've heard stories of law enforcement being called out to conduct an investigation for an infant death and not going because it was a "SIDS" death. We all know that not all sudden and unexplained infant deaths are SIDS, although about 85% turn out to be after autopsy, death scene investigation, and review of the history. My understanding of the research is that only 1-3% turn out to be abuse. But the point is that death scene investigation- not crime scene investigation- is vital to the diagnosis of SIDS. I think parents and professionals who work in the area of SIDS agree that every sudden and unexpected infant death (SUID) is not to be assumed to be SIDS. If the CDC Guidelines for death scene investigation of sudden and unexpected infant deaths were the norm, I believe that we would have less of the media hype that we are experiencing right now.

Lee Tanenbaum
Georgia SIDS Information & Counseling program

Subj: Recent Media Coverage in Chicago
Date: 97-10-21 06:57:35 EDT
From: MOMNLM@aol.com

The following is a letter to the editor of the Chicago Tribune. I have been working with this Dr. for about 2.5 years on the course he refers to. I have his permission to reprint this editorial.

Nancy Maruyama RN

Chicago Tribune 10-7-97

As a pediatric emergency physician I have followed with interest your series of articles of SIDS. I want to note that while it is reasonable for physicians and coroners to be concerned about abuse in families where there are multiple deaths, it is vitally important to recognize that SIDS is a real medical entity for which parents are guiltless.

Parents who lose a baby to SIDS spend a lifetime coping with the event; one of the most crucial aspects of their recovery is the realization that they are not at fault.

For the last 2 years I have been working with parents from the Illinois SIDS Alliance in developing a course designed to help emergency physicians tell parents that their child has died. One of the key teaching points is reassurance from the physician that the parents are blameless. It is devastating to families for any member of the medical staff to imply that they are in any way responsible for the baby's death. This happens all too frequently, causing years of unnecessary pain.

It is important that the medical staff of emergency departments approach each unexplained infant death as an unavoidable tragedy until evidence proves the contrary. Our primary role is to provide comfort to the survivors of a dead infant and to facilitate the long process of healing. To imply guilt where none exist needlessly compounds tragedy.

William Ahrens, MD
Assistant Professor
Emergency Medicine and Pediatrics
University of Illinois at Chicago

Selected news articles from the Boston Globe: