Experts, lawmakers call for standardized infant death investigations

WASHINGTON -- Influential members of Congress and child safety advocates are working to change how America investigates and diagnoses more than 4,000 sudden infant deaths each year.

Policy makers have become dissatisfied that five of every six unexpected infant fatalities in the United States are classified as Sudden Infant Death Syndrome or labeled simply as "death by cause or causes unknown."

The congressional attention was sparked by a nine-month Scripps Howard News Service project that exposed the chaotic and wildly varying methods used to investigate when babies die mysteriously.

A consensus is emerging among safety experts and many lawmakers that coroners and medical examiners need clear, national standards on what to do when infants die unexpectedly. States and local governments also need incentives to upgrade their Child Death Review boards, which are meant to ensure that every fatality is thoroughly and accurately investigated.

"We need to improve investigations of infant deaths so parents have the answers they need," said Sen. Frank Lautenberg, D-N.J.

Lautenberg, a member of the panel that handles health matters on the powerful Senate Appropriations Committee, contacted Scripps last month to request results of its investigation into 40,000 infant deaths going back to 1992. The Scripps data was assembled from national death certificate files gathered by the Centers for Disease Control and Prevention.

The study disclosed that coroners in many states almost automatically label most infant deaths as SIDS while others appear to have eradicated the syndrome by using an even more vague diagnosis of "death by unknown causes." A few coroners, however, are reporting that most of these deaths are actually accidental suffocations because parents sleep with their infants or place them in unsafe beds.

"The more we know about these deaths, the better equipped we are to prevent similar deaths in the future. We want to make sure parents can see their children grow up and achieve their dreams," Lautenberg said.

On the other side of Capitol Hill, Rep. Frank Pallone, also a New Jersey Democrat and chairman of the House Energy and Commerce Subcommittee on Health, called for action.

"This is very disconcerting to me," Pallone said. "These statistics suggest that the data are not reliable. Whether we need to do something legislatively or to hold hearings, we will definitely follow up on this."

Rep. Lois Capps, D-Calif., said she was particularly alarmed by findings that the coroners and medical examiners who use the best recognized practices for infant death investigations and review have found that most infant deaths actually are accidental asphyxiations. Those tragic cases are usually because parents sleep with their babies, unintentionally smothering them, or because of unsafe bedding or failure to use a crib.

"These tragic statistics are a reminder of how critical it is to spread the message of safe sleep for babies," Capps said. "It is my hope that the Congressional Infant Health and Safety Caucus (which she helped found this year) can help build awareness about this important issue and also raise the profile of infant health among the public and members of Congress."

The Scripps series had four major findings:

-- Investigations into sudden infant death are chaotic, with some states routinely labeling all such fatalities as the result of SIDS, while others classify most deaths as the result of "unknown causes." Only one in seven deaths are attributed to accidental suffocation, although this also varies by geography.

-- Very few states and local governments have adopted the protocol written by the CDC to standardize and improve how infant fatalities are investigated. The formal investigative checklists are just part of a comprehensive training program designed to help emergency responders and coroners have the best tools to find the cause of an infant's death, while remaining mindful of parents' anguish at the loss.

-- States with strong programs for reviewing diagnoses made by local coroners are discovering many more infant homicides and accidental asphyxiations than states with little or no review. Arizona, with the nation's best Child Death Review programs, finds that one out of every six infant deaths is a homicide, twice the national average.

-- A small but growing number of coroners who adhere to the most thorough investigation protocols are discovering that most sudden infant deaths are accidental asphyxiations.

One of the more poignant responses to the stories came from an anonymous law enforcement official who posted a comment to the Child Death Review story in the Idaho Statesman. (Idaho is the only state with no review program.)

In a message entitled "Wake Up Guys," the official admitted "the second day on the job, without any training, I was sworn in as a 'deputy coroner' and told I have the state's authority to pronounce people deceased. To this day, I was never given any training on what I should do when responding to an unattended death. The elected coroner at that time had been a school bus driver in his prior employment."

Leaders in the SIDS community have been complaining about such lack of training and consistency for years.

The infant survival group First Candle -- formerly the SIDS Alliance -- is again calling for "mandatory use of standardized protocols for autopsies and infant death scene investigations and consistency in reporting of this data for all sudden infant deaths,'' said Deborah Boyd, executive director of the group. "The (Scripps) investigation has provided much-needed, data driven support for these issues that First Candle has long advocated."

Many proponents of reform in the way infant deaths are investigated are hoping a meeting of experts and advocates set for Pittsburgh next April will advance the movement.

"We're also going to be talking about safe sleep practices, but our main focus will be launching a grassroots movement to get legislation that will help standardize infant death scene investigations and reviews according to the new standard protocols,'' said Judith Bannon, executive director of SIDS of Pennsylvania and founder of Cribs for Kids, which is hosting the conference.

Several other SIDS groups have also renewed calls for reforms in the wake of the news reports. "We need to demand that CDC's Sudden (Unexplained) Infant Death Investigation protocol must be applied as mandatory, not a voluntary protocol as it is now,'' said Chuck Mihalko, president of the Connecticut-based SIDS Network.

(E-mail Thomas Hargrove at hargrovet(at)shns.com. E-mail Lee Bowman at bowmanl(at)shns.com. For more stories, go to http://www.scrippsnews.net)