By LEE BOWMAN and KEVIN CROWE
Scripps Howard News Service

Child-safety advocates are stepping up calls for national standards on investigating sudden infant deaths after new revelations about the tattered patchwork of state systems determining what kills more than 4,000 babies a year.

Although federal and international authorities have had guidelines for making a diagnosis of Sudden Infant Death Syndrome for many years, experts around the country say they are often skipped or only cursorily done.

Dolls used to recreate death scenes for investigators: Infant death scene investigators often use featureless but life-size dolls like this to re-create the setting in which a baby was found by a parent or other caregiver. The dolls are specifically made not to be too realistic out of sensitivity to parents."Having death-scene information is a requirement for the diagnosis of SIDS. It's essential in detecting other threats to infants. But nationwide, this happens in as few as a quarter of the cases in some jurisdictions; maybe half in others," said Dr. James Kemp, a leading infant-death researcher who just joined the staff at St. Louis Children's Hospital. "How can we set a public health agenda when we don't have complete reports on so many of these deaths?"

Such experts have turned up the volume for national standards after a Scripps Howard News Service study of 40,000 sudden, unexplained infant deaths since 1992 showed that geography, rather than medical evidence, often determines whether babies are found to have died from SIDS, suffocation or "undetermined" causes.

Scripps has found enormous differences -- from state to state and county to county -- in the quality of infant-death investigations, and the level of training, oversight and review of those charged with solving mysterious infant deaths.

The federal Centers for Disease Control and Prevention in recent years developed a uniform investigative guideline -- known as the Sudden Unexplained Infant Death Investigation protocol, or SUIDI -- but few states have adopted its use.

Rep. Lois Capps, D-Calif., a co-founder of the National Caucus on Infant Health and Safety, is one of several members of Congress who have expressed concern about the lack of investigation standards brought to light by Scripps.

"This is certainly something that our caucus could take up and look for some solutions to what seems to be a very complex situation. The system has given people false confidence that we know what's happening with these infants' deaths,'' Capps said.

"I would champion a hearing on this. There is a federal concern with the CDC being involved in this effort, and they're probably not adequately funded for this task."

How America investigates sudden infant death: This graphic shows how many states have special rules for infant-death investigations, how many follow standards set by the Centers for Disease Control and Prevention, and how many require that only medical doctors should investigate the deaths of babies.The CDC says at least 13 different types of investigators -- from highly trained medical examiners to elected coroners, sheriffs and justices of the peace -- are responsible for finding and reporting cause and manner of death when a baby dies without any clear medical reason.

"Getting uniformity from this disparate group requires the work of heroes and saints," Kemp noted.

"Not enough resources have been put toward making sure diagnoses in infant deaths are standardized," said Dr. Marian Willinger, the special assistant for SIDS at the National Institute for Child Health and Human Development, who oversees most government-sponsored infant-death research at the National Institutes of Health. "The scene investigations are a huge hole in our knowledge."

Dr. Carrie Shapiro-Mendoza, a CDC epidemiologist, is leading a new project aimed at filling that hole and making infant-death investigations follow the same routines nationwide.

"Without every state doing the investigations the same way, we're never going to have consistent classification and reporting of infant deaths. And we can't do anything to prevent these deaths," she said.

The new system is voluntary, and so far only seven states and the District of Columbia have made use of a new SUIDI form mandatory, with the protocol in use in parts of seven other states, according to a Scripps survey of state medical officers around the country.

The survey also found that while 36 states and D.C. have some special protocol for investigation of infant deaths, states where death is reviewed predominantly by elected coroners are less likely to use standardized forms or have specialized procedures.

Dr. Carrie Shapiro-Mendoza: Dr. Carrie Shapiro-Mendoza heads up efforts by the federal Centers for Disease Control and Prevention to standardize infant-death investigations and diagnoses nationwide. (SHNS photo courtesy Centers for Disease Control and Prevention)Only 58 percent of states that elect all or most of their coroners have specific guidelines in place for infant-death probes, compared with 84 percent of states that appoint all or most of their medical examiners.

Although qualification requirements vary among the states, coroners often aren't required to be pathologists or even medical doctors.

The problems are frustratingly familiar to groups seeking answers about SIDS and other causes of infant death on behalf of bereaved parents.

In 1971, the International Guild for Infant Survival's survey of state medical officers found 16 different names being used for SIDS deaths, and no uniform system of classification for reporting SIDS deaths.

Nearly three decades later, the SIDS Alliance lobbied Congress to have the federal government establish standardized death-scene-investigation protocols for all sudden infant deaths. That effort produced the first set of national guidelines, in 1996, but five years later, officials found they had been adopted in only a few states and coroners were complaining that they were too cumbersome and complicated.

The CDC gathered dozens of national experts to revise the protocol, with the newly named First Candle-SIDS Alliance organization even arranging to "field test" new forms through interviews with parents who had lost a baby.

First Candle has been urging members for about a year to press their state and local officials to adopt the new death-investigation guidelines, a program the group's leaders plan to accelerate in the wake of the Scripps reports.

"Until we have wide use of the revised investigative reporting form, it's difficult to really understand the numbers,'' said Marian Sokol, president of First Candle. "It's impossible to mandate what state and local officials do from the federal level, but the CDC has taken the lead in trying to set a national standard and we want to support that in any way we can."

Special rules for infant death investigations: This map shows the states that do not have special investigation procedures, called protocols, when infants die suddenly and mysteriously. (SHNS map by Thomas Hargrove)At the heart of the new federal effort by the CDC is an eight-page questionnaire and the training of thousands of police, medics and coroners on how to use it, while still being compassionate with families who have just lost a baby. If coroners or medical examiners use the new CDC reporting form and answer all 201 questions, they will have conducted a complete and thorough infant-death inquiry.

"Our focus is on consistent reporting and a consistent approach to the investigations," said Terry Davis, a CDC health educator who has trained nearly 10,000 officials on how to conduct infant-death-scene investigations and autopsies since the agency's initiative was launched in March 2006.

"In a lot of places, infant autopsies are not done or the body arrives from a location four hours away and there's no information with it to guide the pathologist," Davis said. "With the form, people are at least looking at the scene and giving some idea of the surroundings and circumstances in which the baby died.''

Deborah Robinson, an infant-death specialist with the SIDS Foundation of Washington who has conducted training on death-scene investigations around the nation, said she thinks the CDC initiative will only work if all emergency personnel and police are prepared to handle the death of a baby carefully and compassionately.

"We've had cases where a child-care provider was locked in a closet, where a mom was kept in a yard in her nightshirt for four hours in the winter -- really shoddy investigations," said Robinson, a former deputy sheriff who lost her own son, Ian, to SIDS in 1991.

Washington state has recently adopted several reforms to improve infant-death investigations and autopsies, including full reimbursement for autopsies accompanied by complete scene reports, but even so, Robinson said, "not all the investigations are what they should be."

The Scripps survey found that five states offer investigators extra money for completing a SUIDI form in a bid to compensate for the extra time it takes to do a complete investigation and complete the paperwork.

One is Mississippi, where the legislature recently authorized coroners to be paid $100 for every SUIDI form they complete.

Data supplied by the CDC show that 87 percent of sudden infant deaths in Mississippi are due to SIDS, yet when state officials have reviewed case files for those deaths in recent years -- the new incentives just took effect this year -- they've found the required details to make that diagnosis are usually lacking.

Training for infant death scene investigations: Allison Chaney and Tony Ciriello demonstrate how to document a death scene "What we've found in the child-death-review process is really troubling," said Jamie Seale, a member of the state's Child Death Review Board from Tupelo.

"It's really astounding. About 85 percent of the time, information on each case is incomplete. By law, everyone is supposed to fill out a death-scene investigation, especially in cases of sudden infant death. They just aren't doing it all or they are doing it improperly. Sometimes they don't even have an autopsy done."

Federal standards require both a scene investigation and an autopsy, along with a medical history of the infant, be done to exclude all other possible causes of death before SIDS can be diagnosed.

Inconsistencies in how infant deaths are probed persist even in states considered trendsetters.

California has led the nation in setting up systems for infant-death investigations and reviews, establishing the first review boards to detect child abuse in the mid-1970s and the first infant-death-investigation protocols in 1989, with several updates since. Yet Scripps found that diagnosis of SIDS is still often a matter of geography from county to county within the state.

"We put in place a diagnostic procedure and protocol that was to be followed by all 58 counties, whether they have a coroner, medical examiner or coroner-sheriff. But there's no real state oversight. Some death investigators preside over their counties like feudal lords and don't like being dictated to," said Barry Brokaw, a lobbyist in Sacramento and a past member of the First Candle-SIDS Alliance board. He lost his son, Kevin, to SIDS in 1988 at 14 weeks of age.

"A lot of pathologists are either not following the procedures in the law because they don't want to or are not getting the funding to do them. The bottom line is, you can pass laws, but you can't compel someone to use their best judgment."