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Sudden infant death syndrome is still a mystery — but a far less common killer

It's been 40 years since a small group of grieving but resolute parents in Washington banded together to fight sudden infant death syndrome, yet SIDS remains in some ways a mystery, its cause unknown.

Even so, partly through their work and that of many others, death rates from SIDS have fallen dramatically since then, and scientists are learning more every day about ways to thwart this cruel killer of sleeping babies.

"We don't know the cause or causes of SIDS, but we have learned a great deal about factors that enhance risk," said Dr. Abraham Bergman, director of pediatrics at Harborview Medical Center and an early SIDS researcher.

A campaign urging parents to put their infants to sleep on their backs gets overwhelming credit from most experts for the reduced incidence of SIDS. After stomach-sleeping, many scientists now rank parents' smoking as the No. 2 risk factor.

They're also investigating babies' breathing systems, infants' overheating and babies' rebreathing of "used" air, and they're seeking explanations for the higher SIDS rate among infants who share a bed with their parents.

Though SIDS' cause isn't known, studies do reveal that many SIDS babies have abnormalities in a part of the brain involved in the control of breathing and waking, according to the SIDS Alliance, a national organization.

By definition, SIDS is an enigma: the sudden and unexplained death of an infant under age 1. The deaths always occur during sleep and happen most often between the ages of 2 months and 4 months, usually to babies who were apparently healthy.

Though SIDS is relatively rare and the rate is falling, it remains the leading cause of death among American infants ages 1 month to 1 year.

The SIDS Foundation of Washington, now marking its 40th anniversary, and similar groups formed later around the country, have helped bring down the rates by supporting SIDS research and spreading the word about babies' sleep safety.

They also offer support to parents who have lost a baby to SIDS — a service many call invaluable when grief, and sometimes feelings of guilt, are overwhelming. When requested, the Washington group connects new SIDS parents with others who have suffered the same devastating loss.

"Knowing that you didn't cause it and you couldn't have stopped it" is an important and healing message other SIDS parents can deliver, said Mike Flynn, who speaks from experience.

Now publisher of the Puget Sound Business Journal, he and his wife, Betsy, lost a baby daughter, Sarah, to SIDS in 1974. Contact with other parents through the SIDS foundation helped them weather the tragedy, he said. He later served as foundation president.

Said a SIDS mother of such support: "It's critical to your mental health."

With SIDS incidence dropping, fewer parents are enduring such a loss. Washington's rate fell by half between 1993 (before the major back-sleeping campaign) and 1999 — from 1.85 deaths to .86 deaths per 1,000 live births. Nationally, SIDS claimed an estimated 2,648 babies in 1999, down from 4,669 in the early 1993.

Early on, this state developed into an influential center of SIDS research, through the collaboration of many, including the SIDS Foundation of Washington.

Now celebrating its 40th anniversary, the foundation was started in 1961 by Mary Dore, her late husband Fred (later a justice of the state supreme court), and two other couples who had lost babies.

A chief early accomplishment was passage of the nation's first law requiring the autopsy of infants who die suddenly of unexplained causes, said Bergman, who became first president of what is now the SIDS Alliance.

With this and related data, he said, Washington has the largest and most comprehensive study of cases in the world — a resource for researchers everywhere as they continue to unravel SIDS' mystery.