The mystery of SIDS

Suzette Gripp: Suzette Gripp was 18 and living in Memphis, Tenn., when her daughter, Sheyenne, died at three-and-a-half months of age in 1974. It was SIDS parents like Gripp, along with a handful of medical researchers, who successfully lobbied federal health officials and Congress to make research and prevention of sudden infant deaths a major focus of the National Institute of Child Health and Human Development, starting with the Sudden Infant Death Syndrome Act of 1974.

Until after World War II, police and doctors generally assumed that "crib death" of infants was the result of either accidental suffocation or infantile pneumonia, provided there was no sign of child abuse.

By the 1970s, medical journals and professional associations were advising doctors that sudden infant death was, more often than not, the result of some mysterious disease or defect in the brain or respiratory system. The term and definition of SIDS were formally adopted at an international conference on sudden deaths in infants held in Seattle in 1969.

Decades of SIDS research has found many risk factors that make it more likely that a seemingly healthy infant will stop breathing, but it was studies from Europe, Australia and New Zealand during the 1970s and '80s that spotlighted one particular threat -- babies sleeping on their stomachs.

"Back to Sleep": A national campaign launched in 1996 encourages all new parents to place their babies on their backs in their cribs to help reduce the risk of Sudden Infant Death Syndrome. (SHNS photo courtesy Back to Sleep Campaign, National Institute of Child Health)That in turn generated the U.S. government's "Back to Sleep" campaign encouraging new parents to position babies on their backs for sleeping. The outreach effort, begun in 1994, gets credit for cutting SIDS deaths by 30 percent to 50 percent by the end of the decade.

In 1992, 80 percent of more than 6,000 sudden unexplained infant deaths nationwide were labeled SIDS deaths; just four years later, as Health and Human Services Secretary Donna Shalala announced a 30 percent decline in SIDS deaths since 1992, only 69 percent of such deaths were being called SIDS.

Shalala said in 1996 that 1,600 fewer deaths from SIDS was "a real cause for celebration. This is a very rapid improvement and there's every reason to believe that the Back to Sleep campaign has made the difference."

But soon after that celebration, SIDS experts began seeing a worrisome plateau in sudden infant deaths, around a stubborn 4,000 a year. The difference was, fewer and fewer of those deaths were being classified as SIDS, so that by 2004, only about half of the infant deaths without obvious medical causes were being called SIDS.

The shift appears to have occurred for many reasons -- from deliberate decisions by health officials and medical examiners to avoid SIDS diagnoses to a failure among many investigators to go through the extensive process of elimination of other causes of death that leaves SIDS as the only explanation.

"The success of the Back to Sleep effort has been short-lived and in the past few years, the number of infant deaths has held steady," said St. Louis University's Kemp. "The diagnostic mess has been the subject of a lot of meetings and debate, but the lack of consistency continues and it leaves too many infants dying who don't have to be."

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