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Monday, June 7, 2010

N.C. Medical Examiner Defends SIDS Rulings In (Possible) Baby Murder Cases

N.C. Medical Examiner Unswayed By Critics

No one has more control over deciding how babies died in North Carolina than Dr. John Butts.

As N.C. state's chief medical examiner, he has the final say on thousands of autopsies each year. He doesn't hesitate to change findings that don't fit his standards.

But when it comes to healthy N.C. babies who die unexpectedly in their sleep, Butts' approach has troubled law enforcement officials, prosecutors and even members of his own staff.

"We're frustrated," wrote the head of a Gaston County child protection panel, protesting a SIDS ruling from Butts' office. "We realize that there is controversy around this topic and understand hesitancy in broaching and yet we see children dying..."

Butts believes unexplained baby deaths should be ruled sudden infant death syndrome, or SIDS, barring concrete evidence of suffocation, such as a witness or a confession. He attributes deaths to SIDS even when faced with factors that suggest other causes.

Butts' bias toward the SIDS label - which is supposed to indicate a natural and unpreventable death - runs counter to a national trend. Other states and jurisdictions are finding new ways to classify those deaths if circumstances suggest babies may have suffocated while sleeping with adults or in unsafe bedding.

Supporters of the trend hope to prevent infant deaths by educating parents about the dangers of unsafe sleep and to help researchers focus on finding the cause of truly unpreventable deaths. Law enforcement authorities say different classifications would also leave open the possibility of criminal charges in instances of neglect or abuse. Charges now are difficult to pursue when the cause of death is listed as SIDS.

Butts, who is 64 and near retirement, resists the trend. He argues it wrongly assumes foul play, does not save lives and worsens innocent families' grief.

He's proud that his philosophy has remained consistent since he joined the chief medical examiner's office in 1975.

"I impose my will on how we do things," Butts told the Observer.

That will is based on his training as a forensic pathologist and his compassion for parents.

"When we assign a cause of death, it's not just a purely intellectual activity," Butts said. "It has consequences for people, particularly if we said something that you did killed your child - that you rolled over on it, slept on it, that you were in bed with it."

'We're frustrated'

In Gaston County, officials believe some infant deaths that have been labeled SIDS were clearly asphyxiation. Members of a child protection team complained in 2008 about the case of a 5-week-old found dead sleeping between her parents.

The medical examiner's investigative report says the girl flipped from her back and onto her side, where her nose and mouth pressed against her father's body. The local pathologist ruled the 2006 death "positional asphyxia."

Butts' office disagreed.

A medical examiner changed the cause of death to sudden infant death syndrome.

Aware of the dangers of adults sleeping with infants, the child protection team questioned in a letter why the cause of death changed.

Cathy Kenzig, chairwoman of the group, said the panel did not suspect malice by the parents. But she said only through "honest findings of asphyxiations" could child protection officials save more lives.

Butts said he reviewed all the original investigative and medical records and concluded there wasn't enough evidence to call the death asphyxia.

In a response to the team, he wrote that while an infant's sleeping with other people is considered a risk factor, it cannot be regarded as the cause when a child is found facedown and dead.

"There was nothing to say that it was more likely that the child died as a result of being asphyxiated by a parent than sudden infant death syndrome," he told the Observer.

Dispute led to Law

One of the most public disputes between Butts and local authorities erupted in 2001 when Alamance County investigators asked Butts to change a SIDS ruling. He refused.

Investigators learned 5-month-old Kaitlyn Marie Shevlin died napping in a bouncy seat in an unlicensed day care center. Her blood contained an antihistamine, which the owner used to make babies sleepy.

A state pathologist, Dr. Thomas Clark, called it SIDS. Then-District Attorney Rob Johnson asked Butts to change the cause of death to poisoning.

Butts recalled the case in a recent interview with the Observer.

"He wanted us very badly to change it to something that would allow him to prosecute," said Butts, who still believes there wasn't enough evidence to show drugs caused the death.

Butts said he doesn't often hear complaints from investigators about his rulings, but he says a SIDS diagnosis should not stop a prosecutor from proceeding with a case.

Johnson, in fact, did go forward. Instead of pursuing a homicide charge, he successfully prosecuted the day care owner for misdemeanor child abuse and neglect.

He also worked with state legislators to secure passage of "Kaitlyn's Law," which toughened penalties for day care workers who drug babies to quiet them.

To this day, the autopsy reads SIDS.

Johnson, now a Superior Court judge, is still "uncomfortable" with the SIDS ruling, but respects the longtime medical examiner.

"Dr. Butts is not one who overstretches," Johnson said. "He doesn't go out on a limb to espouse a theory that is questionable... It's not his job to roll over and play dead for the DA."

Compassion for parents

When it comes to infant deaths, Butts sees parents as his patients.

Their feelings are on his mind as he recites the doctors' creed, "First, do no harm."

Butts said the vast majority of parents whose babies die unexpectedly have had nothing to do with the death. A ruling of "undetermined," instead of SIDS, would unjustly burden parents with feelings they may have done something wrong, he says.

Over the years, his office has organized SIDS support groups to help parents. He speaks on SIDS education at least once a year.

He remembers an acquaintance, a doctor, who lost a baby to sudden infant death syndrome. "It scarred her for life," he said. "A nightmare."

Asked about his compassion for parents, Butts said: "Well, aren't most people compassionate? I was trained as a physician... That's part of my role.

"As a physician, I'm supposed to help people."

A new approach

Dr. Henry Krous, a nationally known SIDS researcher and professor of pathology at the University of California at San Diego, says there's confusion among medical examiners across the country about the SIDS diagnosis and high numbers of cases that involve sleep risks.

An Observer review of 554 SIDS deaths in North Carolina over five years found that 69 percent involved risks for suffocation, such as unsafe bedding and bed-sharing.

Krous believes medical examiners should use the SIDS diagnosis if they're not certain about a cause, but should also counsel parents against unsafe sleeping conditions found at a death scene.

He chaired an international panel in 2004 that recommended separating SIDS cases into categories for research purposes, depending on sleep position and other risks.

Others argue compassion should not get in the way of science.

"The worst truth is better than the sweetest lie," said Dr. Ljubisa Dragovic, chief medical examiner in Oakland County, Mich.

"We have an obligation to the public to serve them with truth. It's the crux of public service. It's important to start with the facts."

SIDS is a diagnosis of exclusion, meaning all other causes of death have been eliminated after an autopsy, a thorough death scene investigation and a review of the baby's medical history.

Classifying deaths as SIDS if there's a possibility of suffocation or another cause does not conform to the accepted definition, says Dr. Gregory Schmunk, a board member of the National Association of Medical Examiners.

"SIDS means there is nothing else leading you in another direction," Schmunk said.

Dr. Clifford Nelson, Oregon's deputy state medical examiner, says he stopped using the SIDS label about five years ago. He now lists many infant sleep deaths under a broader category, sudden unexpected infant death, or SUID. He lists the manner of death as "undetermined," instead of natural.

Nelson says other medical examiners in his office who have more seniority still use SIDS and list the manner of death as natural. "It's a generational thing," Nelson said. "It's about where they were trained and what was the philosophy" they were taught.

The latest trend holds little attraction for Butts.

Medical examiners are undoubtedly going to have different philosophies, Butts says. Some may disagree with his use of the SIDS category, but he says his standards have remained consistent.

Statisticians, he says, can use his data more confidently to study trends because they know what goes into each category. Other examiners change classifications every several years, he says.

'Inconsistent' rulings

In Butts' Chapel Hill office, some staff members disagree with his philosophy about SIDS.

They have found subtle ways to alert the public a SIDS ruling may not be correct.

Associate Chief Medical Examiner Dr. Deborah Radisch, who will take over for Butts when he retires July 1, follows his guidelines. But if she believes unsafe sleeping might have been a factor in the death, she adds a note saying the possibility of suffocation couldn't be ruled out.

"I know it sounds inconsistent and maybe it is," she said. "My main concern is that parents get the information that this is a preventable death."

Butts, she said, "doesn't want to make families feel bad." But she said deaths need to be diagnosed properly to prevent future deaths.

She doesn't think most SIDS cases are asphyxiation. "I don't think you can just make that jump. I just wish we knew what caused it and we wouldn't have to call it SIDS any more."

Her colleague, Lisa Mayhew, lead child death investigator and trainer, acknowledges that many sudden infant death cases involve bed-sharing and are still called SIDS, even when medical examiners say they couldn't rule out suffocation.

"It's the bane of my existence," said Mayhew, who has worked in the N.C. medical examiner's office for 10 years. "I could take one case and pitch it to six doctors and I bet you that I would get three different decisions - undetermined, SIDS and overlay."

But Mayhew said she has "come to a meeting of the minds" with Butts. "I respect the way that he sees it. SIDS is kind of an 'undetermined,' really.... I see his viewpoint in terms of what you're giving to a family."

Butts doesn't deny that some of the deaths he called SIDS could have been suffocation. But it's not many, he says, and he doesn't worry about missing a few.

"Don't we have a principle in this country, something to the effect that 'A thousand guilty should be let loose rather than convict someone who's innocent?'"

Thousands and thousands of children sleep with their parents each night, he said.

"In the morning most of them will all wake up."

North Carolina Babies Dying From Abuse, Neglect Disguised As SIDS

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, WRAL, Google Maps

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