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Saturday, June 5, 2010

North Carolina Babies Dying From Abuse, Neglect Disguised As SIDS

SIDS Rulings Mask Clues In Many N.C. Baby Deaths

Too often in North Carolina Baby deaths, SIDS hides the truth.

The public knows sudden infant death syndrome as a mysterious, unpreventable death that strikes otherwise healthy babies in their sleep.

Medical examiners are supposed to classify deaths as SIDS only after a thorough scene investigation, autopsy and review of a baby’s medical history have ruled out all other causes.

But in this state, newborns and infants have died face down in pillows and soft couches. They have died on adult beds and alongside one or more people, or with their heads covered in blankets. In some cases, police have suspected foul play, even homicide.

The N.C. chief medical examiner often calls those deaths SIDS.

That’s different from what a growing number of national experts say may be the real killer:


“SIDS has been used as an easy option,” says Dr. Ljubisa Dragovic, chief medical examiner in Michigan’s Oakland County, who rarely uses the SIDS diagnosis. “It has had a catastrophic effect. Every year babies die of preventable causes.”

An Observer investigation has found that in North Carolina, two-thirds of SIDS autopsies list risks that raise the possibility babies suffocated because of unsafe bedding or sleeping with another person.

North Carolina’s bias toward SIDS masks the danger of suffocation when parents lay their babies to sleep in unsafe surroundings, the Observer found.

The wide use of SIDS also frustrates law enforcement agents, who say the diagnosis – considered a natural death in North Carolina – prevents them from prosecuting neglect or other crimes.

Investigators in Alamance and Gaston counties dropped efforts to file criminal charges in two cases after medical examiners linked the babies’ deaths to SIDS, the Observer found. In both families, more than one baby had died unexpectedly during sleep.

The Alamance investigation was recently reopened following questions by the newspaper, but no one knows how many cases remain stalled or were never pursued.

Medical examiners in states and counties across the country say suffocation – usually unintentional – is more common than previously believed.

Instead of using the label SIDS so often, they list deaths in categories they say are more accurate and specify unsafe sleep conditions that may have played a role.

In Virginia, the medical examiner has even launched a review of 20 years of SIDS cases to raise awareness that unsafe sleeping practices may have contributed to infant deaths.

N.C. Chief Medical Examiner Dr. John Butts refuses to adopt such changes, even though experts say they represent current research-based recommendations and practices.

Butts defends his approach and the work of his office. Without strong evidence of another cause, he labels cases SIDS. His sympathies are with parents.

“One of the principles of medicine is first do no harm,” Butts says. “When we assign a death to asphyxiation, we’re saying that the family’s action killed that child. … That’s a terrible burden to put on a family when you have no degree of certainty that that happened.”

Observer findings

The cause of SIDS, also called “crib death,” remains unknown. Scientists suspect problems with babies’ breathing, and where and how they sleep.

In 1992, the American Academy of Pediatrics first recommended against placing babies to sleep on their stomachs, citing studies that showed the practice was a risk for SIDS. A nationwide “Back to Sleep” campaign in 1994 urged parents to put babies to sleep on their backs.

Cases called SIDS declined about 50 percent in the next few years, according to Carrie Shapiro-Mendoza, a SIDS researcher with the Centers for Disease Control and Prevention in Atlanta.

She says in 1999 medical examiners began moving away from calling babies’ unexplained deaths SIDS and toward classifying them as accidental suffocation or undetermined.

After conducting thorough death scene investigations, states and smaller jurisdictions that follow those rules find relatively few cases of “classic SIDS” – a baby sleeping alone, on his or her back in a crib and without fluffy bedding or stuffed animals.

North Carolina recently reported a dramatic jump in SIDS, from 98 in 2007 to 136 in 2008, a 39 percent increase. The spike came in the same year that total N.C. child deaths dropped by 5 percent.

The Observer’s study of 554 N.C. SIDS autopsies from 2004 to 2008, the most recent years available, found:

Only about 25 babies, or five percent of those thought to have died of SIDS, were apparently sleeping safely, on their backs in their own cribs without dangerous bedding.

Some 69 percent of SIDS autopsies, about 383 deaths, listed risk factors such as unsafe bedding or babies sleeping with other people.

Among them, about 237 babies died while sleeping with at least one adult or child. At least four infants were found in bed with four other people.

Twenty-five percent of the autopsy reports, or about 136, did not include enough information to determine whether unsafe sleep conditions existed.

In about 50 SIDS autopsies, medical examiners actually wrote that they could not rule out accidental suffocation by adults. In several, they wrote that any time an adult sleeps with an infant it is impossible to rule out accidental suffocation.

“When an infant sleeps with one or more adults, asphyxia due to overlying cannot be entirely excluded as the cause of death,” Dr. Deborah Radisch, N.C. associate chief medical examiner, wrote in one autopsy.

Movement away from SIDS

In recent years, jurisdictions outside North Carolina – including Georgia, New Mexico, Michigan, St. Louis and Charleston – are working harder to investigate and clearly classify unexplained baby deaths.

“You can’t prevent deaths if you don’t know why they died,” says Dr. Mary Case, chief medical examiner for St. Louis County, Mo.

But there’s no national standard. Medical examiners use their own guidelines for diagnosing SIDS from state to state, county to county.

New Mexico is part of a federal pilot project involving five states that are trying to more carefully and consistently label unexplained infant deaths.

“It’s reinforced the need for very thorough scene investigations,” says Dr. Sarah Lathrop, an epidemiologist with the New Mexico medical examiner’s office. That office collects some of the same information North Carolina seeks: the child’s sleep position, where it slept, a description of the bedding and other risks.

Results in her state, Lathrop says, “follow the national trend. Fewer deaths are being called SIDS, and more are ruled undetermined or accidental strangulation.”

Virginia recently started categorizing babies’ deaths that involve unsafe sleep separately from SIDS.

Medical examiners there in 2007 started using “sudden unexpected infant death,” or SUID, to raise awareness that unsafe sleep may have played a part. Dr. Anna Noller, a forensic epidemiologist for the state’s chief medical examiner’s office, says she hopes the findings will eventually save lives by educating parents.

In North Carolina and across the country, public health agencies and nonprofits give away cribs or playpens, conduct public information campaigns and work with hospitals to alert new parents about the dangers of unsafe sleep.

Confusion arises when deaths are called SIDS even though unsafe bedding or other risk factors may have been present and could have caused suffocation, says Janice Williams, director of the Center for Injury Prevention at Carolinas Medical Center.

Williams says in some cases the label SIDS is used to protect families from guilt. “But what really concerns me is that while we save these parents that grief, we can’t help the other parents unless we clarify that message.”

It’s not just parents who don’t get the message. Pediatricians and family doctors who warn families about SIDS don’t always understand the risk of accidental suffocation.

“If we could get all the professionals to be more aware,” Williams says, “they could all start adjusting the message they give to parents about how to protect their infant in a sleep environment.”

Inconsistent investigations

States and counties that thoroughly investigate child deaths report fewer SIDS cases.

In Charleston County, S.C., Deputy Coroner Bobbi Jo O’Neal says, two investigators look into each unexplained infant death. Authorities visit the death scene and use a doll to perform a re-enactment with the person who discovered the body.

O’Neal says officials have found bed sharing, soft bedding or other risks in virtually every case. Deaths that were once considered SIDS, she says, are now ruled undetermined or sudden unexpected infant death (SUID). The death certificate lists any unsafe sleep risks.

“You miss those scenes, you miss a lot,” O’Neal says. “There’s got to be consistency in that investigation before you call it SIDS or anything else for that matter.”

North Carolina doesn’t have full-time trained investigators to send to most infant deaths. Law enforcement sometimes isn’t called. Local medical examiners, paid $100 per case by the state, often don’t go to the scene, either. Police are asked, but not required, to fill out a checklist for the state medical examiner’s office.

Lisa Mayhew, the state’s top child death investigator, says the medical examiner’s office where she works has made strides in the past 10 years. Among them was creation of the child death investigation checklist distributed to most law enforcement agencies and local medical examiners.

Mayhew said use of the checklist is improving. Those forms are now filled in and returned for more than half of child death cases.

But when medical examiners receive a baby’s body and perform the autopsy, they may have one document that tells little more than name, time, address or similar information surrounding the death.

And then the autopsy may reveal – nothing.

An autopsy alone usually can’t distinguish between SIDS and suffocation. That’s why it’s important to get evidence from the scene.

“We don’t really know why these babies are dying,” says Dr. Patrick Lantz, a medical examiner in Winston-Salem who does autopsies for the state.

Lantz agrees with much of Butts’ philosophy about SIDS. Both say it is a real condition that scientists don’t yet understand. SIDS has struck infants, especially those between ages 2 months and 4 months, for thousands of years. They point to how millions of babies have slept with their parents since biblical times and how most adults today slept facedown when they were infants. The vast majority survived.

Even so, Lantz says he understands why medical examiners nationally are going through a “diagnostic shift,” with many refusing to label cases SIDS if there are risk factors such as infants sleeping with adults.

“That’s for research into why these babies are dying,” he says. If all the risk factors are mixed up under one name, “you’ll never figure it out.”

Butts acknowledges that some deaths the state called SIDS could have been suffocation. But he says the number is probably very small.

He says you don’t need to change SIDS diagnoses to advocate for safe sleep. “I can’t tell you how often that we’ve pushed for safe sleeping practices,” he says. And his office does collect information about sleep risks for research, though that database is not accessible to the public.

Butts does not agree with the new scrutiny other states and counties are applying to sleep-related baby deaths. He says the movement unfairly casts suspicion on parents.

Reclassifying sleep deaths, Butts says, has failed to save lives. He says the child death rate in those jurisdictions remained unchanged even though medical examiners reported fewer SIDS cases.

“They just call it something else,” Butts says. “It’s great fashion to fix things by changing the name. So call it something else. Does it fix anything?”

Compassion vs. science

Medical examiners who advocate for new classifications hope the answer is yes.

They say the purpose is to prevent infant deaths by alerting parents to the dangers of unsafe sleep.

Law enforcement authorities also say different classifications could have made criminal prosecution more likely for parents they believe were negligent in baby deaths.

Most infant deaths, including SIDS deaths, are sleep related, says Dr. Scott Krugman, who heads the pediatrics department at Franklin Square Hospital in Baltimore County, Md. Krugman says that SIDS does exist, but better investigations have shown it’s not the great baby killer experts once believed.

“The bucket that we call SIDS is getting smaller and smaller and smaller,” he says.

Maryland Chief Medical Examiner Dr. David Fowler says his office was among those who moved to new classifications about 10 years ago.

He considers Butts a traditionalist in his view of SIDS.

Like Butts, Fowler does not want to worsen parents’ grief with a ruling that might cause them to worry they did something wrong.

“But unfortunately, if we don’t look at these in detail over the years at some point, we’re never going to understand it. We’re just going to repeat the same thing day in and day out,” Fowler says.

Laura Reno, a SIDS parent and staff member with First Candle, a national group that tries to reduce infant mortality, says 99 percent of calls to her group about sleep-related deaths involve bed sharing.

“We don’t need compassion in order to figure out why babies are dying,” Reno says. “We need facts, and we need consistent diagnosis. … Being compassionate is not helping us find the answers.”

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Sources: McClatchy Newspapers, Google Maps

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