Some N.C. lawmakers say they want to study how the state identifies SIDS deaths following a Charlotte Observer investigation into unexplained baby deaths.
SIDS is defined as a diagnosis of exclusion. The death remains unexplained after other causes are ruled out by autopsy, death scene investigation and review of medical history.
But the Observer found widespread use of the label in North Carolina even when the possibility of accidental suffocation could not be ruled out. In some cases, police suspected crimes.
Rep. Beverly Earle, a Charlotte Democrat, said she is concerned that law enforcement officials are frustrated by the state's use of the SIDS label when it prevents them from prosecuting neglect and other crimes.
"I'm really shocked and surprised," Earle said. "It just seems to me that the medical examiner or anybody in the medical field would want to see justice if, in fact, there is any slight chance that a child died as a result of neglect, and certainly, if it was intentional."
Earle, who co-chairs the Legislative Study Commission on Children and Youth, said her panel will review the findings and conduct research to see whether legislation is appropriate.
Sen. Malcolm Graham and Rep. Martha Alexander, both Charlotte Democrats, have instructed their staffs to collect research on other states' practices.
Sen. Bill Purcell, a Laurinburg Democrat, plans to bring the newspaper's findings to the state's child fatality task force to review other state policies and legislation.
Resistance to change
North Carolina is out of step with counties and states that use new ways to classify deaths and address dangerous sleeping practices.
Instead of using the SIDS label so often, jurisdictions in places such as Georgia, New Mexico, Maryland, Michigan, St. Louis and Charleston now list deaths in categories they say are more accurate and specify when unsafe sleep conditions may have played a role.
Supporters of that approach hope to prevent infant deaths by educating parents about the dangers of unsafe sleep. They also want to help researchers focus on finding the cause of truly unpreventable deaths.
N.C. Chief Medical Examiner Dr. John Butts has refused to adopt those changes. Butts instead has maintained a policy that unexplained infant deaths should be ruled SIDS unless there is concrete evidence such as a witness or a confession that the child suffocated.
He argues the new trend wrongly assumes foul play, does not save lives and worsens innocent families' grief.
State Health Director Dr. Jeffrey Engel defends Butts and the practices of that office, which oversees medical examiners statewide. Engel, who oversees Butts' office, says an outside review is unnecessary and could be dangerous.
Engel did not dispute the newspaper's findings but said it is "risky" for outside bodies such as legislators to attempt to set policies or practices for specialized medical care.
Engel acknowledges the controversial debate over SIDS, which he calls an "emerging science." Like Butts, Engel says there is no evidence that proves new practices have actually reduced the number of babies dying.
"In terms of prevention, it really doesn't matter how the death is classified, because we want to prevent all forms of preventable infant deaths," said Engel.
The Observer studied more than 550 N.C. autopsies classified as SIDS from 2004 to 2008, the most recent years available. Among the findings: Only about 25 babies, or 5 percent of those thought to have died of SIDS, were apparently sleeping safely, on their backs in their own cribs without dangerous bedding.
Two-thirds of N.C. autopsies attributed to SIDS mention risks that raise the possibility that babies suffocated because of unsafe bedding or sleeping with another person.
There's no national standard on SIDS investigations, yet several states have introduced or passed laws intended to reduce the number of SIDS deaths.
Lawmakers in Idaho and New Jersey have called for standardizing SIDS investigations. New parents in Texas are required to get information about sudden infant death syndrome.
North Carolina doesn't have full-time trained investigators to send to most infant deaths. Law enforcement sometimes isn't called. Local medical examiners often don't go to the scene. Police are asked, but not required, to fill out a checklist for the state medical examiner's office.
Child advocates are fighting to preserve $150,000 in state funding for programs like Back to Sleep, which helps educate parents about SIDS.
The program, run by the N.C. Healthy Start Foundation, also provides educational materials on safe sleeping for new parents at 40 of the state's 89 birthing centers.
Engel said he would like to hire more medical examiners and increase public awareness efforts, but he said that's not realistic in today's economic climate.
He also worries about unfunded mandates if state leaders attempt to legislate public awareness programs at hospitals. He also opposes attempts to legislate autopsy procedures.
What happens next
Graham said it's important to strike a balance between giving law enforcement every opportunity to fulfill their legal obligations, yet not subject well-meaning parents to potentially overzealous prosecutions.
"When my kids were small we'd fall asleep on the couch holding them. We give them a late-night feeding and end up sleeping with them at night," he said. "Those things are unintentional, but they do have some negative consequences if something unfortunately happened."
Butts, 64, will retire at the end of the month, and Associate Chief Dr. Deborah Radisch will take over.
Radisch, 56, told the Observer that she didn't always agree with Butts' approach to SIDS investigations.
She sometimes added a note to her SIDS autopsies when she felt asphyxia couldn't be excluded. It's her way to signal that the death might have been prevented.
She has said she'll also consider suggesting changes in the way the state classifies SIDS deaths, including specifying risks or calling them by a different name if suffocation can't be ruled out.
Awareness matters most
Tom Vitaglione, co-chairman of the state's child fatality task force, said the group has looked at public awareness campaigns and methods of reducing SIDS for years.
Vitaglione said exploring new classifications is less important than ongoing public awareness efforts.
He expects the task force to talk this summer about SIDS and review an unexplained 39 percent increase of SIDS cases in 2008.
Reporters Fred Clasen-Kelly, Karen Garloch, Lisa Hammersly and Doug Miller contributed to this story.