N.C. medical examiner defends SIDS findings

Second of six parts

No one has more control over investigations of babies' deaths in North Carolina than Dr. John Butts.

As the 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 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 unless there is concrete evidence, such as a witness or a confession, that the child suffocated. 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 about to retire, resists the trend. He argues that 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."

Pathologist overruled

In Gaston County, officials think 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 face down 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 said in an interview.

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 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 D.A."

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 might have done something wrong, he said.

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, agrees that the SIDS label is important to help grieving parents.

But he says medical examiners also have a responsibility to counsel parents against unsafe sleeping conditions if they're found at a death scene.

An Observer review of more than 550 SIDS deaths in North Carolina over five years found that 69 percent involved risks for suffocation, such as unsafe bedding and bed-sharing with adults or children.

Krous headed 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, Michigan. "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. 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]."

Consistent rulings

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.

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

They have found subtle ways to alert the public that 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 thinks 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 says 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 anymore."

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 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."

Maria David contributed to this report.