Congress passes bill to better understand sudden infant deaths

Legislation seven years in the making

WASHINGTON, D.C. - Every year in America some 4,000 babies die suddenly and unexpectedly in their sleep before their first birthday. Another 25,000 are stillborn. Now, after trying for seven years, Congress has passed a bill on Wednesday, the “Sudden Unexpected Death Data Enhancement and Awareness Act”, endorsing ongoing federal efforts to better understand why.

Sometimes baby deaths are ruled a result of Sudden Infant Death Syndrome or SIDS; other times coroners and medical examiners conclude that the death was caused by suffocation and still others are simply unexplained. But as Scripps News has reported since 2007, thorough forensic investigations of the deaths almost always reveal babies who die had been sleeping in conditions likely to increase their risk for suffocation.

Over the past seven years, researchers and child safety advocates have found more evidence that putting infants in adult beds, or with another person, or in soft bedding, increases the risk they’ll stop breathing.

In June 2008, in a separate initiative, then-Illinois Senator and presidential candidate Barack Obama introduced the Preventing Stillbirth and Sudden Unexpected Death Act that would have established a national registry to track both groups.

[MG1] The following year, New Jersey Democratic Rep. Frank Pallone and the late Sen. Frank Lautenberg of New Jersey introduced legislation to investigate unexplained infant deaths, including and expanding on Obama’s legislation. The House bill sought authorization to spend about $10 million for training investigators and promoting safe sleep.

But even with a friend in high places, the bill went nowhere as they introduced it again in 2011, and again in early 2013. After Lautenberg’s death in June 2013, Sen. Sherrod Brown of Ohio took over Senate sponsorship of the bill, along with Kelly Ayotte, R- New Hampshire.

The message that babies need to be alone, on their backs, in a crib remains a tough sell.

Researchers at the federal Centers for Disease Control and Prevention have set up a pilot registry of infant deaths that now includes reports from child death review panels in 9 states and may soon be expanded. Organizations from the American Academy of Pediatrics to the National Institute of Child Health and Human Development have also expanded the formula for infant safe sleep beyond just having them sleep on their backs.

A survey published by the NICHD last week found more than half the babies in the U.S. are still put down in soft bedding, amid fluffy bumpers and piles of stuffed toys.

And last week, researchers sponsored by the National Institutes of Health reported new findings that many babies who die of SIDS have abnormalities in their brain stems that keep them from reacting when their breathing is impaired.

So some babies may be in more danger from an unsafe sleep environment than others. But there’s no test to tell, so keeping all babies in cribs free of possible obstructions remains the first and best defense.

The Sudden Unexpected Death Data Enhancement and Awareness Act directs the Department of Health and Human Services to carry on with ongoing research related to sudden and unexpected infant death but prohibits further spending. The legislation also requires DHS to report back to Congress in two years.

That bill got unanimous approval in the House Wednesday evening in a proceeding that lasted about 45 seconds.

Laura Crandall, co-founder and president of the Sudden Unexplained Death in Childhood Foundation, said passage was a landmark for her and thousands of SUID and stillbirth families who lobbied for the legislation.

“My government is standing up and recognizing the greatest loss I have ever known- the inexplicable loss of my daughter.... our country will finally address uniform data collection to improve our research and public health efforts in order to save the lives of our children.”

Pallone didn’t speak before the bill passed, but earlier had acknowledged “this isn’t everything that I think CDC can be doing to address the needs of families around the country, but it represents a critical step.”

President Obama is expected to sign the bill into law sometime this month, more than six years after he first helped set it in motion.

[Also be Lee Bowman: House votes to establish SIDS national registry]

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