Saving babies: Exposing sudden infant death in America

Every day in America at least 10 babies die suddenly and mysteriously.

Yet some of the more than 4,000 victims of sudden infant death each year could be saved if there was a simple national standard for infant death investigations, a seven-month review by Scripps Howard News Service has found.

In fact, we are getting further away from solving the mystery of Sudden Infant Death Syndrome because of sloppy procedures, manipulation of statistics, misguided efforts to protect the feelings of grieving parents, and deliberate attempts to make SIDS go away, at least on paper.

Professional bias

The Scripps review of 40,000 infant deaths going back to 1992 revealed that the quality of infant death investigations, the level of training for coroners, and the amount of oversight and review vary enormously across the country. In many cases, professional bias -- both for and against a diagnosis of SIDS -- trumps medical evidence.

Penny Callonas of Memphis finds her healing in writing "letters to Trace," the baby she lost to SIDS after only a few months of life. She often goes to the graveyard to visit. (SHNS photo by Karen Pulfer Focht / The Commercial Appeal)

As a result, the odds that an infant's death will be correctly diagnosed are often determined by geography rather than science. In other words, the same death might be called SIDS in one county and called something else just down the road.

"There's no rhyme or reason to what medical examiners are diagnosing as SIDS, suffocation, strangulation or undetermined," said Theresa Covington, director of the National Center for Child Death Review Policy and Practice at the University of Michigan. "The variability is across the country and within the states."

The confusion comes with a high price: the deaths of more babies who might have been saved through medical research.

The deeply muddled approach even has many experts questioning if a much-celebrated decline of SIDS deaths since the early 1990s was actually as significant as first believed.

"If we had a standard approach to investigating and classifying these deaths, our approach to prevention and research could be a lot clearer," said Dr. James Kemp, a leading SIDS researcher at St. Louis University. "The whole reason for keeping count is to figure out how to avoid the next infant death."

Devon "Trace" Callonas, born May 22, 2002, to Penny and Jason Callonas of Memphis, Tenn., died from SIDS on July 30, 2002. (Karen Pulfer Focht ~ The Commercial Appeal)

Determining public policy

Yet questionable statistics from this haphazard system continue to guide public policy and outreach campaigns, as well as government research efforts that have devoted more than $110 million to SIDS research in the past five years from the National Institutes of Health alone, plus millions more from foundations seeking to understand why babies continue to die.

"You have to worry about the quality of this data [from death certificates], but there are researchers still using them," Covington said. "I simply don't put any credibility on any research that uses those numbers anymore."

According to standards set by the World Health Organization and the Centers for Disease Control and Prevention, SIDS should be diagnosed when an infant less than 1 year of age dies suddenly and unexpectedly and no clear cause of death is found after a thorough investigation that includes an autopsy, examination of the death scene and review of the child's clinical history.

Scripps conducted an extensive study into how infant deaths are investigated in the United States using records provided by the CDC. The records detail the sudden deaths of 40,239 infants, half of whom died in the 1990s and the rest in a five-year period from 2000 to 2004.

The records of the most recent infant deaths, from 2000 to 2004, can be examined in the first searchable database of its kind at www.scrippsnews.com/sids.

Regional, yearly variation

The review found enormous variation in how the deaths of infants are investigated and classified. The SIDS rate, according to the data, is 12 times higher in Mississippi than in New York. Most experts agree that the big differences are caused by how the deaths are classified, not by how the babies died.

Variations are sometimes even greater from county to county within a state because coroners take widely different approaches to how they determine the cause of infant deaths in their areas.

Federal records show a dramatic decline in reported cases of SIDS, dropping from 4,895 cases in 1992 to only 2,247 in 2004, the most recent year for which complete data is available.

The records reviewed by Scripps showed that cases of SIDS virtually disappeared in some states and cities over the last several years, but closer examination of the data makes it evident that thousands of those lives have not been "saved," but rather lost under another name for the death.

Coroners and medical examiners said SIDS was responsible for nearly 80 percent of all sudden infant deaths 15 years ago and only 55 percent in 2004. What increased during this time were diagnoses that CDC statisticians labeled as "threats to breathing" and "other ill-defined causes of mortality."

Some researchers think that this "code shifting" of infant death causes has substantially overstated the success of public health efforts against SIDS. The diagnosis of SIDS has been replaced on death certificates by new and vague terms like "undetermined cause" and "sudden and unexplained death."

The result is that, while deaths attributed to SIDS are down, the overall number of sudden infant deaths has remained steady, and even ticked up in some years, since 2000.

Death by another name

"A lot of us are concerned that the rate [of SIDS] isn't decreasing significantly, but that a lot of it is just code shifting," said John Kattwinkel, chairman of the Centers for Disease Control and Prevention's special task force on SIDS. "We don't know where the best place is to put our emphasis on further reducing the risk of SIDS. It is still a very high killer of babies."

The danger is that medical researchers can't trust the causes listed on infants' death certificates, clouding hopes for a solution to the mystery of SIDS -- and also masking other risks to babies.

"We are told that physicians should first do no harm," said Henry Krous, a prominent child pathologist and director of the San Diego Sudden Infant Death Syndrome Research Project. "But we need to be aware that we can do harm by using terms that don't gain anything to the understanding of this disorder."

Suzette Gripp, of Eads, Tenn., has been calling for better SIDS investigations since the 1974 death of her daughter, Sheyenne. She became so frustrated by the system she even conducted her own research survey of more than 300 SIDS parents over a seven-year period.

"The problem to me lies with there not being a law in place for a national standard for death investigation of infants," Gripp said. "They [medical authorities] tout the numbers going down, but those numbers are so skewed because of the reporting system that no one really knows how many babies are dying from SIDS or from other causes.

"If we just had good information, I believe we could find out what's causing all these deaths. There needs to be a federal mandate, that it's punishable by law if local and state investigators don't follow whatever protocol has been set. It needs to be made a national priority."