Special report: Saving Babies

Exposing Sudden Infant Death in America

A new look at the records of 40,000 infant deaths casts deep doubt on claims of medical authorities that cases of Sudden Infant Death Syndrome have fallen by more than half since the 1990s. A Scripps Howard News Service Investigation of infant deaths going back to 1992 revealed that the quality of infant death investigations, the level of training for coroners, and the amount of oversight and review vary enormously across the country.

In many cases, professional bias -- both for and against a diagnosis of SIDS -- trumps medical evidence. The sloppy investigations and muddled records come with a very high price: the deaths of more babies who might have been saved through medical research.
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The mystery of sudden infant death has been solved in a growing number of communities in America.

But the answer is seldom SIDS.

Coroners who carefully follow federal guidelines while probing the 4,000 unexpected infant deaths nationally each year are discovering a hard truth. Most of these babies are suffocating in completely avoidable accidents, a nine-month investigation by Scripps Howard News Service has found.

These infants die because they are accidentally smothered by their parents or other children who sleep with them or because they are placed in dangerous overstuffed sofas or heavily blanketed adult beds.

Babies rarely die while sleeping alone in a crib.

The Scripps study also found that most coroners are not following the methods of investigation recommended by the Centers for Disease Control and Prevention, prompting them instead to rely on often-incorrect diagnoses of Sudden Infant Death Syndrome, still the officially listed cause for 57 percent of all infant deaths.

"It is far more common for a child to die of asphyxiation than to die of SIDS," said Dr. Andrea Minyard, the state medical examiner in Pensacola, Fla. "We say this with a heavy heart. But it is an accurate portrayal of what really is happening. Most of the time, it's either a parental overlay or unsafe and excessive bedding."

Minyard ruled that two-thirds of the 41 sudden infant deaths in her area during a five-year period were accidental asphyxiations. She's one of a growing number of medical examiners who blame suffocation, not SIDS, for most unexpected infant deaths, according to the Scripps study of 40,000 infant fatalities over 15 years.

'We have a clearer picture'

These men and women believe they are in the vanguard of a new and revolutionary understanding about infant death, an emotionally difficult revelation that's critical to saving babies.

"I think we have a clearer picture than many others out there," said Chief Medical Examiner Dr. Dean Sienko of Lansing, Mich. "The benefits of looking carefully at these deaths have helped us to make recommendations that can save infants. Almost every time, we are finding multiple violations of the safe sleep guidelines."

The study found that 11 coroners using federally recommended best practices when examining the deaths of babies discovered, on average, that 72 percent of the 354 infant fatalities in their communities actually were accidental suffocations.

The 11 coroners cover Calhoun, Ingham, Oakland and Saginaw counties in Michigan; Lake and Marion counties in Indiana; Escambia County, Fla.; Ouachita Parish, La.; Hennepin County, Minn.; St. Charles County, Mo., and Dane County, Wis.

The Scripps study found these 11 counties have three things in common:

- Coroner's investigators with training in forensic methods are dispatched to the death scene immediately to re-create the conditions in which children die. They do not rely solely on police.

- The investigators carry a special checklist — most often the CDC's Sudden Unexplained Infant Death Investigation protocol — to guide them on what steps to take.

- These coroners all report their findings to a local Child Death Review team that considers whether each fatality was adequately investigated.

Diagnosis grossly overused

The Scripps study found Child Death Review boards have a profound impact on whether accidents are detected. States with both local and statewide review boards are detecting more than twice as many suffocations than are states with little or no review.

Coroners who do not take all three of these steps usually report most infants in their counties are dying of SIDS, the Scripps study found. According to standards set by the CDC and World Health Organization, a coroner should issue a diagnosis of SIDS when the cause of death is still unknown even after a complete autopsy, investigation of the death scene and detailed review of a child's medical history.

But the top 11 coroners in the Scripps study said they are confident the SIDS diagnosis is grossly overused in America because their own investigations overwhelmingly lead to different conclusions.

"I think this epidemic of (adult) overlays and asphyxia cases that has been reported is largely showing up now because of increasing consistency in death-scene investigations," said Dr. Ljubisa Dragovic, medical examiner in Pontiac, Mich.

Nearly 90 percent of the 58 sudden infant deaths reported from 2000 to 2004 in Dragovic's Oakland County were classified as accidental suffocations. It's the nation's highest rate of reported infant asphyxiation.

"They are rarely found in cribs, but in big beds or other places where they may be sharing a sleep space with four or five other family members," Dragovic said. "Looking at the adults, we find a lot of instances where alcohol or drugs are involved. The sheer tiredness of new mothers on several occasions has been a factor."

'No choice but to call it SIDS'

At the opposite end of the spectrum, the Scripps study found, at least 157 counties with populations of 100,000 or more reported zero cases of infant asphyxiation during the five years of the study.

The study found that nearly two-thirds of all sudden infant deaths in these counties were attributed to SIDS, a rate well above the national average. These counties were also nearly 20 percent more likely than the rest of the nation to report that infants die of "cause or causes unknown."

In addition, these 157 counties reported that only 6.6 percent of all infant deaths were homicides, a detection rate one-fifth below the national average of 8.2 percent for infanticide. The study generally found that counties with below-average detection of homicides were also likely to have below-average rates of reported accidental asphyxiation.

The most populous area to report zero cases of accidental infant strangulation was Omaha, Neb., where 60 infants died unexpectedly during the five-year period of the study. More than 90 percent of those were labeled SIDS deaths.

"We aren't doing this for humanitarian reasons," said Omaha's acting coroner, Tom Haynes. "If the family doesn't admit to lying on top of the child during sleep — something I've never known to happen — then we have no choice but to call it SIDS."

Unlike most of the 11 medical examiners leading their colleagues in detecting suffocation deaths, Haynes is not a medical doctor or a pathologist. He's a deputy county attorney who contracts with physicians to perform autopsies. Omaha police officers conduct infant death scene investigations rather than coroner's investigators trained in forensic medicine.

The top coroners in the Scripps study agree it's difficult to tell grieving families the truth.

"As a coroner, you don't want to look into the face of a grandmother or father or mother who rolled over and smothered their child. There's no way to console them," said Dr. John McGoff, coroner for Indianapolis through 2004. "But without that knowledge, there's no prevention."

Recognizing the truth

Under McGoff's administration, accidental suffocation was the diagnosed cause of death for two-thirds of the 74 infants who died suddenly during the five-year period of the Scripps study.

What is needed, these top coroners say, is the courage to speak a difficult truth.

"Look, I go to the national meetings" of medical examiners and pathologists, said Dr. Kanu Virani of Saginaw, Mich. "They don't want to stick their neck out because they think they are blaming the parents or the caregivers. But these are all preventable deaths."

Virani has the nation's second-highest detection rate of accidental suffocation, according to the Scripps study. He said the fact that four of the 11 coroners are from Michigan is a testament to intense training efforts in that state.

"A huge percentage of sudden infant deaths will be found to be asphyxia if a proper death scene investigation is done," said Theresa Covington, director of the Michigan-based National Center for Child Death Review Policy. "This is what the national evidence is leading us to. They are not homicides or anything else. They are accidental suffocations."

She predicted recognition of that truth will lead to a new infant safety campaign in America.

"If we can get to the truth, then we can craft the right intervention strategies so that we can actually make a dent in the number of sudden and unexplained infant deaths. We are doing a disservice to the parents if we don't tell them the truth," Covington said.

— For more information on the Scripps investigation go to www.scrippsnews.com/sids.