Conference probes infant sudden deaths like SIDS

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PITTSBURGH - Like many colleagues around the country, Allegheny County (Pa.) Medical Examiner Karl Williams says he's less likely than he once was to use the term Sudden Infant Death Syndrome on a death certificate after a baby dies suddenly and unexpectedly.

"I used to call most infant deaths that didn't reveal a cause through an autopsy SIDS," Williams said. "But over the years, I've found fewer cases I can truly say merit excluding any other cause of death. The whole field of investigating and classifying infant death is in flux in my jurisdiction and around the country."

When Williams started out as a hospital pathologist more than two decades ago, the autopsy he did was often all the investigation there was when a baby died.

But today, in Allegheny and a growing number of counties and cities, a sudden infant death brings about a detailed investigation of the scene and a review of the baby's health records before an autopsy. Within weeks, the case is usually studied by a child-death review team that includes social and health workers as well as law-enforcement investigators.

Nearly three years after a Scripps Howard News Service series, "Saving Babies," showed widespread discrepancies from state to state and county to county in how such deaths are investigated and classified, Williams said, "There is no standardization nationally in how we approach these very complex cases."

Scripps, and later, federal researchers analyzed reports on thousands of death certificates that show even as the number of deaths attributed to SIDS has leveled off in recent years, the number of infant deaths classified as accidental suffocations is rising. Also rising in frequency are deaths from unknown causes. The increase in both categories is because experts like Williams find babies dying in circumstances that suggest a cause other than SIDS. Whatever their deaths are called, some 5,000 American babies not yet 1 year old still die suddenly in their sleep each year.

Yet the pathologist and nearly 200 other child-safety advocates meeting here this week see signs that the chaos surrounding infant-death investigations-- and the resulting lost opportunities to save babies' lives -- is improving.

Where thorough investigations have been done, however, the evidence points resoundingly toward most of those babies being placed in unsafe sleep conditions: in a bed other than a crib or bassinet; with an adult or another child; surrounded by heavy bedding, toys or other objects; and placed on the stomach or side to sleep rather than on the back.

The second national conference on safe sleep was held by Cribs for Kids, a Pittsburgh-based nonprofit that combines safe-sleep messages to parents and other caregivers with distribution of cribs to new parents who otherwise might put their baby in an unsafe place.

The effort was established in 1998 after local child-death review officials noted that 90 percent of babies identified as SIDS deaths in Allegheny County were not in a proper crib when they died.

The crib program was started and is still run by SIDS advocates, including several SIDS parents. CFK Executive Director Judy Bannon said that safe-sleep messages address both known risk factors for SIDS deaths and accidental suffocation.

"SIDS is not suffocation, but all the measures we use can help reduce the risk of death from both causes," she said. "We know the crib program works, because we've run matches against child deaths and our list of more than 8,500 who have received cribs. In 12 years, all the babies have survived to the first birthday (the age that risk from SIDS ends)."

Some researchers are concerned that the focus on preventing accidental suffocation may somehow hinder research on the causes of SIDS. But most at the conference agree with the notion that while any baby is at risk from suffocation in an unsafe sleep environment, some have brain or heart anomalies that make them particularly likely to die when breathing is challenged.

"Our goal is to reduce the risk of death while infants sleep, period,'' said Judy Rainey, a SIDS parent and advocate who helped organize the conference.

While safe-sleep campaigns are under way in many states and cities, there is still no national campaign on the scale the federal government mounted in the mid-1990s to encourage caregivers to place babies on their backs to sleep -- a movement that cut the SIDS rate by half.

Many here argue that only a unified national message can cut down on confusion among new parents on where and how their baby sleeps. But they also say the jumble of terms used to classify sudden unexplained infant deaths hinders consensus.

Several developments described at the meeting may help ease the confusion.
.For the first time, the federal Centers for Disease Control and Prevention is collecting sudden-infant-death case studies from five states -- New Jersey, Georgia, Michigan, Colorado and New Mexico -- that all meet investigative standards and forms developed by the CDC and a national panel of experts, and that have all gone through a formal child-death review process.

"We know from death-certificate data that the number of accidental suffocations nationwide rose almost fourfold to 12.6 percent of all sudden unexplained deaths in 2004,'' said Carrie Shapiro-Mendoza, the CDC's chief epidemiologist for infant deaths, who is directing the new surveillance system. "But death certificates can't give us the details we need to understand what's behind these deaths."

Similarly, the National Center for Child Death Review has established a case-reporting system that includes more than 72,000 records of deaths in children from birth to age 18 with data soon to be included from all but about a dozen states.

"The whole idea behind the death-review system is not to point fingers, but to identify systems and risk factors that can be changed," said Theresa Covington, director of the center based in Okemos, Mich. "Our early analysis of more than 6,000 infant deaths tells us that 43 percent were sleeping in an adult bed, only 17 percent were in a crib, 62 percent were on an unsafe sleep surface."

There is also movement in Congress to pass legislation to improve the infant-death-investigation system nationwide. Rainey, who is also deputy chief of staff to Sen. Frank Lautenberg, D-N.J., told the conference there are now 28 co-sponsors of the bill drafted by the senator and Rep. Frank Pallone, D-N.J., last year.

With national health-care legislation completed, proponents are hoping that momentum can build to enact the infant package, which includes plans to have the CDC registry include all states, provides additional support to child-death-review programs, promotes standards for infant-death investigations and autopsies, and calls for a revamped national safe-sleep campaign.

It also would establish a pilot registry to classify and track some of the roughly 25,000 stillbirths that occur in the United States each year.

(Contact Lee Bowman at BowmanL(at)shns.com.)

(Distributed by Scripps Howard News Service, http://www.scrippsnews.com)