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What does 30% reduction in SIDS rate mean?

Date: Sun, 30 Jun 1996 19:33:24 -0700
From: Ellen Siska
Subject: Re: What does 30% reduction in SIDS rate mean?

"Edward (Ned) Balzer" wrote in part:
==========beginning of quotation==========
Hi everyone,

Although I was at the Int'l conference, I missed the session in which some numbers were released (by the NIH?) suggesting a 30% reduction in the SIDS rate over the past several years. I was wondering if anyone who attended or has read the original paper can comment on the meaning of this number?

How good are these data? Are these numbers in dispute, and if so, why? Did the presenters qualify their statements in any way?
=========End of quotation============

Hi Ned and everyone,

It may interest everyone to know that the information printed in all of the national newspapers and covered on television was a direct result of a press release sent out by NICHD (National Institute of Child Health and Human Development). I picked up a copy of the release at the NICHD table at the International Conference. It was embargoed for release at 9:00 a.m. on Monday, June 24, 1996. The contact person listed on the release was Ruth Dubois, NICHD Coordinator of the Back to Sleep campaign, who can be reached via email at duboisr@hd03.nichd.nih.gov

Here is what it said, typed verbatim:

========================================
SIDS Death Rate Declines by 30 Percent

The death rate from sudden infant death syndrome (SIDS) in the United States declined by 30 percent in the 24-month period between October 1993 and October 1995, announced Dr. Duane Alexander, director of the National Institute of Child Health and Human Development (NICHD) today at the Fourth SIDS International Conference in Bethesda, Maryland.

"The data reported at this meeting today, even though based on provisional statistics, clearly document the first significant decrease ever in SIDS deaths in the United States," Dr. Alexander said. "The reduction in SIDS amounts to approximately 30 percent since the announcement of the American Academy of Pediatrics recommendation in 1992 and the beginning of the "Back to Sleep" campaign in 1994, which have changed the percentage of babies being placed on their stomach to sleep from over 70 percent to less than 30 percent. This represents a saving of over 1,500 infant lives a year and is the major factor responsible for the decline in our post neonatal infant mortality rate in 1994 and 1995."

Prior to this campaign 5,000 to 6,000 U.S. infants died of SIDS each year, making it the leading cause of death among infants one month to one year of age. Although its exact causes remain unclear, studies both here and abroad have implicated prone sleeping as a prime risk factor.

While the statistically significant decline in the rate of SIDS deaths is encouraging, Dr. Alexander emphasized that much remains to be done. "These findings demonstrate the importance of placing infants on the back or side to sleep, and suggest that if an intensified "Back to Sleep" campaign can reach the goal of over 90 percent of infants sleeping on their backs or sides, an even greater reduction in SIDS deaths will be achieved."

The Back to Sleep campaign is sponsored by a coalition of Federal agencies, including the NICHD, and by the American Academy of Pediatrics, the SIDS Alliance, and the Association of SIDS Program Professionals (ASPP).

The NICHD is part of the National Institutes of Health, the biomedical research arm of the Federal government. Since its inception in 1962, the Institute has become a world leader in promoting research on reproductive biology, including fertility regulation, and population issues; development before and after birth; maternal, child, and family health; and medical rehabilitation.
================End of Release=========

While I'm glad to see a reduction in the SIDS numbers, what concerns me is that I believe this information is being interpreted by many as the "cure" for SIDS, and that it may lead people to believe that "the only babies who die of SIDS are those who are placed on their tummies to sleep." This, of course, is not true.

I am also disappointed that the conference itself received very little national news coverage.

Since this is my first posting since returning from the International Conference, I'd just like to add that I feel privileged to have been able to meet so many great friends from this list. I won't name all of you because I would feel badly if I inadvertently left anyone out :) I also extend my thanks to Chuck and Deb Mihalko, who gave me the opportunity to present on "The Circle of Support" at their Internet seminar, and who kindly remembered my son, Edward, on the occasion of his fifth birthday, as well as ALL of our babies, with a "Celebration of Life" birthday cake at the Meet and Greet. I also agree with Nancy Eckert that Debbie Gemmill's contributions to the Memorial Service were apparent, and it was a beautiful and very moving remembrance.

Looking forward to some discussion on this press release . . .

Ellen Siska
York, PA

Date: Sun, 30 Jun 1996 21:15:50 -0700
From: Debbie Gemmill
Subject: SIDS News

I was in Washington DC at the International SIDS Conference when the news broke about the 30% reduction of SIDS rates.

It's hard not to be happy about such good news. If any baby lives because someone told his or her parents to put them to sleep on their back, what a celebration!

What does this mean really? Well, a lot of people will think that we have found the answer to SIDS. This is what I found upon my return to my own neighborhood, a community of educated, aware, interested human beings. They greeted my return with hugs of congratulations, as if I were there when the cure for SIDS had been discovered.

It's pretty hard to ignore a 30% reduction rate. The Back to Sleep campaign has clearly made a difference. But is it the complete answer?

Barry Brokaw, a SIDS father and a prominent legal advocate for SIDS families, in his closing remarks at the International SIDS Conference, questioned the impact of Back to Sleep on SIDS families. He wonders how parents who have already lost children to SIDS, parents who have already done all the right things, are doing with all this new information. At the conference he shared comments from a mother whose baby was back sleeping---and died. We must continue to encourage SIDS research, but we must also be sensitive and astute.

With love and concern,

Debbie Gemmill

Date: Sun, 30 Jun 1996 20:33:17 -0700
From: Nancy Eckert
Subject: Re: What does 30% reduction in SIDS rate mean?

I, too, am concerned that the general public will interpret this "reduction in SIDS" information in the most simplistic terms possible: That surely, when a baby dies of SIDS, it's because the parents "neglectfully" put their child on its stomach. As was discussed at the conference last week, if the prone sleeping position was THE reason, why doesn't every baby who ever slept on its stomach die of SIDS? Certainly the decrease is encouraging, but it's NOT the complete answer and we have to be careful when dealing with new SIDS parents. Until there is irrefutable evidence of the cause, I think it's important to keep in mind that all these things...sleep position, smoking and everything else...are still just risk factors and that babies die of SIDS without any of the risk factors evident and, conversely, babies exposed to one or more of the risk factors mostly DON'T die of SIDS. All the pieces of this puzzle have not yet been put together to form the complete picture...

Nancy Eckert

Date: Mon, 1 Jul 1996 07:09:24 -0700
From: "Edward O'Hagan"
Subject: Re: What does 30% reduction in SIDS rate mean?

It can be stated with absolute certainty that to-morrow it will either rain or it will not rain .The statement is true but it tells us absolutely nothing about to-morrow...But keeping an umbrella handy at all times is obviously a good idea. Similarly, it is true that back -to -sleep advocacy is strongly supported by statistical data which indicates that the prone position results in greater numbers of SIDS cases than does the supine position .The wise parent will then lay the child in the supine position. But what about the grieving ,guilt -ridden parent who learned about the benefits of back-to-sleep too late? Additionally, consider her increased guilt and anxiety when she hears that the SIDS statistics are reduced by 30% ,probably as a result of the back -to-sleep program. Let's see if she should (1) feel guilty at all (2)see any significance in the 30% reduction. Since SIDS infants have been found dead in positions other than the prone, it may be postulated that the back -to -sleep position does not prevent SIDS. That being the case , the best that can be said about back- to -sleep, and the most inclusive W.R.T. the variety of sleeping positions, is that back to sleep may be effective

Date: Mon, 1 Jul 1996 08:21:21 -0700
From: Lewis P. Lipsitt, Ph.D.
Subject: Re: What does 30% reduction in SIDS rate mean?

I am new to this network, and have also recently attended the conference in Bethesda. I published on SIDS, commenting on interesting parallels between SIDS and failure-to-thrive, in the 1970s. I have been especially concerned in my research as a behavior scientist and psycho- biologist in the facts that

  1. babies are essentially "immune" to crib death for the first two or so months of life, and are safe again after four or five months of age,
  2. the 2-5 month period is one in which there are very significant brain changes, including lots of myelin- tissue growth and dendrite proliferation, and a passing of the torch from sub-cortical structures and reflex control of behavior to cortically mediated behavior,
  3. many risk factors have been documented as precursors of SIDS, most of them accounting for a rather small amount of the variance in predicting SIDS, but none of these in any way documented as a "cause" of SIDS,
  4. an enormous amount of attention has been paid to apnea as a precursor of SIDS, with little or no convincing evidence to date that an apneic condition is the primary antecedent of SIDS,
  5. monitor research has not thus far demonstrated that the use of monitors, at least with the technology and machine-human monitoring available thus far, has been effective in reducing the incidence of SIDS,
  6. respiratory occlusion, of diverse origins, seems to be a significant etiological factor in the demise of a substantial number of infants whose deaths are attributed to SIDS, and this may be why the prone position, soft blankets, heat, and the "sniffles" are risk conditions appearing in so many studies, and
  7. little research has been carried out on the defensive, self-protective behavior characteristic of babies who do not succumb even, as suggested by Nancy Eckert, when the usually cited risk factors (maternal smoking, supine sleep position, and so on) are present. and so on) are present.

Nancy Eckert, Barry Brokaw, Debbie Gemmill and others are correct when they argue that the risk factors are not what "cause" SIDS. Rather, the psycho biological processes of development and survival, including the normal course of learning how to react when confronted with respiratory occlusion (breathing diminution or hypoxia), must be involved. These processes and mechanisms of normal and abnormal functioning must receive vigorous research support in order to truly understand how SIDS occurs.

Even if it is so that supine-sleeping reduces the risk of SIDS, it is important to realize that prone sleeping is not the "cause" of crib death, any more than being the _parent_ of a SIDS child is the cause of his or her tragic death. I do hope that SIDS parents will not presume that the apparent reduction in SIDS cases following the move to back-sleeping means that they did something wrong.

Best wishes.

Lewis P. Lipsitt, Ph.D.
Professor Emeritus, Psychology and Medical Science
Brown University, RI

Date: Mon, 1 Jul 1996 08:38:24 -0700
From: John L. Carroll, MD
Subject: Re: What does 30% reduction in SIDS rate mean?

On Mon, 1 Jul 1996, Lewis P. Lipsitt wrote:

I am new to this network, and have also recently attended the conference in Bethesda. I published on SIDS, commenting on interesting parallels between SIDS and failure-to-thrive, in the 1970s. I have been especially concerned in my research as a behavior scientist and psycho-biologist in the facts that (1)babies are essentially "immune" to crib death for the first two or so months of life, and are safe again after four or five months of age...

Dr. Lipsitt,

Hello and welcome to the discussion. I would have to disagree with point #1 in your recent posting. SIDS does occur within the first 2 months of life, although you are certainly correct that it is more likely to occur between 2-5 months of age. Also, to say that infants are "safe again after 4-5 months of age" is overstating the case a bit. The vulnerabilities that lead to SIDS are probably developmental and the time course of their maturation likely varies between individuals. Some infants apparently do remain vulnerable after 6 months of age and infants 7,8,9 months... up to a year of age die of SIDS. Recently this was discussed in this forum.

Best regards,
John L. Carroll, MD
The Johns Hopkins Children's Center
Baltimore

Date: Mon, 1 Jul 1996 08:51:48 -0700
From: "Lewis P. Lipsitt"
Subject: Re: What does 30% reduction in SIDS rate mean?

Just a quick reply to Dr. Carroll's quick reply: Yes, some babies do indeed die in the first 2 months of life and are regarded as SIDS, and a small number also die after 5 months and are thought to be SIDS.

My point is simply that there is a striking rise in "risk and incidence of SIDS" at _about_ 2 months, and the risk subsides appreciably after five months. Some of the variation is quite possibly due to different levels of maturity (due to premature birth) at birth and in subsequent months. Many epidemiological studies have shown the peak to be at 2-4 months. Some studies indicate that 95% of SIDS deaths occur between 2 and 5 months. We need to look to the processes rather than argue over the precise age distribution.

Lew Lipsitt

Date: Thu, 4 Jul 1996 00:29:49 -0700
From: Tom Keens
Subject: BACK TO SLEEP AND 30% REDUCTION IN SIDS.

At the Fourth SIDS International Conference, Doctor Susan Beal from Adelaide, South Australia, made an analogy which might be applicable.

We often say that "Seat belts prevent deaths from automobile accidents". Clearly, deaths from automobile accidents have not been prevented, as people still die. (She probably should have said 'reduce the risk of death from automobile accidents'). I am sure there are statistics which show even greater than a 30% decrease in auto accident deaths from seat belt use.

However, the failure to use a seat belt is not the cause of deaths from auto accidents!

Seat belt use reduces auto accident deaths, why? Presumably they prevent passengers from being thrown from their cars. Thus, one can imply that being thrown from a car in an accident is a major cause of death. Seat belt use is a tool which may decrease these deaths. But, more important, it gave us some insight into the causes of death.

Like seat belts, back sleeping appears to be an effective tool which reduces the risks of SIDS in some countries. However, prone sleeping is not the cause of SIDS. Perhaps the greatest value to this reduction with back sleeping is that it is telling us something about SIDS. We have just not been smart enough to figure it out yet. Hopefully, this clue will propel our SIDS research efforts towards eventual understanding and 'cure'.

Thank you.

---Tom Keens
Childrens Hospital Los Angeles

Date: Thu, 4 Jul 1996 03:41:37 -0700
From: Jan Hoffman
Subject: 30% Reduction in SIDS Rates

Hi,

I'm not sure how anyone can make that claim. I question whether the SIDS rates have REALLY been reduced, or are there more babies, like Devin, who apparently died of SIDS, but whose autopsy results reflect the cause of death to be "undetermined"? These "undetermined" deaths are NOT included in the SIDS rates, and therefore are not even counted in the statistics, unless they have helped to give the public a "false impression" regarding the reduction in the SIDS rates.

When we finally received Devin's autopsy results, we made an appointment with the doctor to discuss them. The doctor told us that Devin's death was "essentially a SIDS death". The autopsy states the cause of death was due to "undetermined causes with SIDS characteristics present".

How many "undetermined" deaths were not included in the SIDS death statistics, and therefore helped to falsely bring the SIDS rates down?

My big question is: Isn't "undetermined" by definition, really SIDS??

Hugs, and much love,

Jan Hoffman, SIDS Grandparent

Date: Thu, 4 Jul 1996 15:42:57 -0700
From: Lee Tanenbaum
Subject: Re: 30% Reduction in SIDS Rates I have some of the same questions. Our statistics in Georgia seem to fluctuate from year to year. We actually saw a drop before the BTS campaign really geared up. We've had a 12 % decrease in SIDS deaths when we compare the 1985 - 89 and the 1990-94 periods. With our autopsy law, we had more than 90 % autopsies by 1993--this was not true in the 1980s, I'm told. A review of our 1993 SIDS death certificates and child fatality reviews showed that 10 % were not truly SIDS. I guess we also have deaths listed with diagnoses that might better be classified as SIDS upon review. I'm not sure that the statistics are changed based on these reviews. Anyway, I agree that until we are more consistent in diagnosing SIDS, it's very hard to make sense of the data.

I hope that we can look at the new death scene investigation protocols recommended by CDC and make sure that this is happening in Georgia. With consistent autopsy and death scene investigation protocols, maybe we can make more sense of the SIDS data.

Lee Tanenbaum
Georgia SIDS Information and Counseling Project

Date: Fri, 18 Apr 1997 13:06:39 -0700

In response to the question about the claim that the drop is SIDS is not real, but is due to different reporting practices:

The number of babies dying from SIDS has dropped over the past 5-7 years in the U.S., coincident with "Back to Sleep" campaigns. Other countries have shown drops in excess of 50% in SIDS numbers, also coincident with "Back to Sleep" campaigns. If this were simply due to people changing the diagnosis (that is, calling a SIDS baby something else), then the total infant mortality would stay the same, and the drop in SIDS would show up as an increase in other diagnoses. This is not the case. Where SIDS number have fallen, this has been accompanied by a similar decrease in the overall infant mortality. So, the statistics actually represent decreased numbers of babies dying, rather than a diagnostic shift.

I hope this helps. Thank you.
---Tom Keens
Childrens Hospital Los Angeles

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