Over the past decade, diagnoses of Sudden Infant Death Syndrome have fallen dramatically. Unfortunately, this is not because fewer babies are suddenly and mysteriously dying. In a paper published in the most recent issue of JAMA Pediatrics, Ernest Cutz, a pediatric pathologist, explains the disappearance of SIDS from autopsy reports and why this trend isn’t as encouraging as it might seem.
The SIDS diagnosis originally came about in 1969 as a way to comfort parents, raise awareness around the problem, and encourage research into potential underlying causes. Since then, there’s been a good amount of progress, both in terms of scientific inquiry and in getting parents to reduce the risks. One of the most successful efforts was the National Institute of Child Health and Human Development’s 1994 “Back to Sleep” (now “Safe to Sleep”) campaign, which recommended that all babies sleep on their backs on a firm, thin mattress with no blankets, crib bumpers, or other suffocation hazards. In the wake of the campaign, SIDS rates declined by more than 50 percent.
But as Cutz and other experts see it, SIDS advocacy is slowly becoming a victim of its own success. He says this decline in deaths attributed to SIDS—which has plateaued since the late 1990s—has been met with a decline in concern from parents and the medical establishment. In 2014, 3,500 babies died of unexplained causes, 1,500 of which were considered victims of SIDS—making it the leading cause of death for infants 1 month to 12 months old that year.
In his paper, Cutz points to an 84 percent decline in SIDS diagnoses in New York City over the past 10 years and a 95 percent decline in SIDS diagnoses in Wayne County, Michigan. The province of Ontario has no reported SIDS cases from the past two years. The cause of this decline isn’t fewer cases, however. Cutz attributes it to the fact that sudden deaths among infants are now more likely to be reviewed by forensic pathologists instead of pediatric pathologists, and forensic pathologists are less inclined to label SIDS as the determining factor in a baby’s death. Forensic pathologists tend to use suffocation; pneumonia; and, most commonly, “undetermined” as the cause of death.
“Forensic pathologists are trained to seek out causes of trauma and unnatural deaths, not to diagnose medical conditions. Consequently, forensic investigations dedicate a great deal of effort and resources to uncovering ‘nonexistent crime,’ even though the data from the past 50 years show an extremely low homicide rate in this age group,” Cutz writes.
The problem with this is twofold. First, a SIDS diagnoses help parents cope with the trauma and relieves some of the guilt over whether they could have prevented their child’s death. Second, the “undetermined” diagnosis impedes research. The overall decline leads to confusion among the public about the risk of SIDS, as well as less interest among doctors to try to find out what causes it. Also, the “undetermined” diagnoses makes it less likely that tissue samples will be collected, which is crucial for future studies.
While it’s well-accepted that environmental factors affect the likelihood of SIDS, there’s a widespread consensus that underlying biological causes are also at play. Researchers have already discovered a link between SIDS and various brain and heart disorders. Cutz says that technological advances in genetic and molecular analysis would make it easier than ever to discover pre-existing factors and, possibly, treat them before the unthinkable occurs. Unfortunately, Cutz says, there’s less and less enthusiasm for making this happen.
“We are going back to the 1960s, the time before we started calling SIDS ‘SIDS,’ before parents had any support and there was research being done into the cause of death,” Cutz told me. “Abraham Bergman, a pediatrician who was the first president of the National SIDS Foundation, wrote a book about the history of SIDS. He ends it by summarizing all they have accomplished and says that the clock can not be turned back. But that is exactly what is happening.”
Slate thanks Henry Krous, pediatric pathologist and professor at the University of California–San Diego School of Medicine.
