Child Magazine Article on SIDS Draws Attention

Your Feedback is Needed

Recently an article appeared in Child Magazine that caused various reactions from members of the SIDS community. After you have the opportunity to read the article you may want to forward your comments to the Editors of the magazine. Ellen Siska from the PA SIDS Alliance provided the information on how to contact the magazine editors. The mailing address is Child Magazine, 110 Fifth Avenue, New York, NY 10011 and the E-mail address is childmag@aol.com. They request that you include a daytime phone number. Remember to ask them to visit the SIDS Information Web Site at http://sids-network.org.

The following are letters that were written to the editors of Child Magazine by Dr. Keens of the University of Southern California School of Medicine Childrens Hospital Los Angeles, and John L. Carroll, M.D.of The Johns Hopkins Children's Center.

To the Editors of Child Magazine:

A recent article in your magazine on sudden infant death syndrome (SIDS) was misleading, conveyed incorrect information, may have provided a false sense of security for some parents, and increased guilt feelings in parents who have experienced the tragic death of their baby. I would like to emphasize a few points, in hopes that your magazine will consider running an article which is more scientifically correct.

First, SIDS is the most common cause of death in infants between the ages of 1-month and 1-year. It is far more common than lung disease, heart disease, cancer, or injuries in this age range. The incidence in the U.S. at the moment is about one out of every 1,000 babies who are born. Thus, SIDS is actually quite common. SIDS accounts for approximately 7,000 infant deaths per year in the U.S. Put another way, every hour of the day or night, one baby dies from SIDS somewhere in the U.S. SIDS is an important health problem which robs our nation of its future.

Second, your article suggests that parents should try to relax and not worry about SIDS. It probably will not happen to them. Statistically, the odds are in favor of parents for any given child. However, several thousand babies do die each year from SIDS. I would have preferred to see your article a bit more sensitively address your readers who might be SIDS parents.

Third, based on current information, SIDS can not be prevented. Those parents who have experienced the death of their babies did not cause their babies to die, even if they slept on their stomachs. Based on current information, there is nothing they could have done to prevent the death. To imply that the "prevention" strategies mentioned in the article will "prevent" SIDS is incorrect. Many parents have done all of those things, and more, yet their babies still died.

Finally, we do not yet know the cause of SIDS, despite many years of intense research. If SIDS were as simple to solve as the six steps suggested in your article, we would have seen it disappear by now. Many of us would endorse back sleeping, avoiding cigarette smoking, breast-feeding when possible, not over-heating babies, etc. However, there is yet no convincing evidence that every SIDS death could be "prevented" by these techniques.

In summary, I think your article was naive and a bit too simplistic. This approach may worsen the guilt experienced by some parents whose babies have died. I would recommend that your magazine perform a bit more research and consult with more experts in the field before writing such articles in the future.

Thomas G. Keens, M.D.
Professor of Pediatrics
University of Southern California School of Medicine
Childrens Hospital Los Angeles

To the editors of Child Magazine:

I have just read with interest your recent article on Sudden Infant Death Syndrome (SIDS) that appeared in the June/July 1996 issue. First I would like to applaud your publication's efforts to bring this very important subject to the attention of your readership. SIDS is an extremely important public health problem around the world.

SIDS affects many people. In the USA alone over 5000 infants/year die with a diagnosis of SIDS. Just taking into account immediate family would suggest that 30-40,000 people/year are directly affected by the tragic death of an apparently healthy infant. The statement made on page 27 that SIDS is "extremely rare" seems therefore to be misleading. The sudden unexpected death of 1 in 600 healthy infants does not strike me as "extremely rare". In fact, this averages out to about 16 babies/day in the US alone. Or, looking at the weekly death rate, about 115 babies die of SIDS/week, every week of the year, year-after-year, in the US. I wouldn't think this qualifies as "extremely rare".

Later on the same page we are told that "...the American public was reluctant to embrace..." the new advice favoring the non-prone sleeping position for infants. I think this is also potentially misleading, placing undue blame on the 'public'. In fact, the American medical establishment was years behind other countries in making non-prone infant sleep position recommendations and American doctors were very reluctant to embrace the new recommendations when they did come out in 1992.

Titling a section (page 28) "Six Steps to SIDS Prevention" implies to many people that SIDS *will be* prevented by following the proper procedures. It should be remembered that many families have done all 6 things recommended and their baby still died. For the 10's of thousands of parents and grandparents of SIDS victims, the implication that they 'failed' or did something wrong inflicts unnecessary pain and guilt and is simply unjustified.

Again, I would like to emphasize that the article by Stephanie Wood contains a great deal of accurate and extremely important information and you deserve credit for publishing an article on such an important subject. However, I would also urge you to correct the misleading impressions that SIDS is 'extremely rare' and that parents of SIDS victims are somehow to blame for the deaths of their children. It is critically important to employ the term "risk-reduction" while emphasizing that such measures do *not* provide any guarantees. Prevention is a difficult term to use because it means so many different things to different people. It is crucial to get out the message that *some* SIDS deaths can be prevented (avoided) by risk-reduction measures but that some will occur in spite of taking all precautions. SIDS families don't need any more guilt.

I hope you will publish something to balance or offset these misleading impressions. Thank you for your attention.

Sincerely,

John L. Carroll, M.D.
Director, The Johns Hopkins Pediatric Sleep/Breathing Disorders Program
Director, The Johns Hopkins SIDS, Infant Monitoring Program
Associate Professor Of Pediatrics
The Johns Hopkins Children's Center
Baltimore, Maryland

Some question and concerns that come to mind included:

1) Were sources of additional information were sited in the article?

2) Maybe the rate of SIDS is low, but if adults were dropping dead of unknown causes at the rate of about one every hour in the US, more would be done. Does the tone of the article play down the importance of SIDS research?

3) The threat of SIDS may be a "hazy memory" for those who "make it through" but there is a constant and lasting effect on those of us who have been devastated by SIDS. Does the article make any attempt to address this issue?

These are a few of the points we feel are necessary to include in an article about SIDS. When an article is written for the general public, we feel that both points of view should be addressed. The public too often harshly judges SIDS parents as things stand now.

Deb and Chuck Mihalko, Co-founders
SIDS Network

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