The co-sleeping factor

Many parents report medical authorities routinely refuse a SIDS diagnosis if they'd been sleeping with their infants.

Signe Newcombe: Signe Newcomb's son, Gaven, was found not breathing at a caregivers’ southeastern Michigan home in March 2004. He spent nearly two weeks on a respirator at a Toledo hospital, but never resumed breathing on his own. Kim Lankford, a civilian employee of the Baltimore County, Md., Police Department, lost her son, Hunter, at 5 months on April 3, 2006. She tells most everyone who asks that she lost her son to SIDS, even though the Maryland State Medical Examiner's report doesn't call it a SIDS death, but a sudden unexplained infant death.

"As I understand it, they can't call it SIDS because he was sleeping with us. But at the same time, there was nothing from the autopsy to indicate that he suffocated. The investigators told me early on there probably wasn't going to be a reason why he died."

Maryland officials consider relatively few deaths to occur from SIDS and note factors such as co-sleeping or unsafe sleeping environments in many instances.

"It's a fallacy that we have all these decreased deaths," said Donna Becker of Maryland's Center for Infant and Child Loss. "… We should really call it 'SID.' The syndrome is lost. We are really talking about sudden infant deaths with no known cause."

Susan Honaker of Sterling Heights, Mich., lost her 3-week-old son, Evan, in May 2005."He was totally healthy, two weeks early. He had been lying beside me. I woke up and found him gone at about 9 in the morning," she said.

"I called for six weeks straight trying to find out why he died, and they put me off that they were waiting for such and such to come back. Finally they put on the death certificate: 'Accidental suffocation due to hazardous sleeping environment.' "

"The coroner told me flat-out: 'If you'd found him in a crib, I would have called it SIDS, but since he was laying with you, I put this.' But there was no evidence from the autopsy or the bedding that he suffocated. I've done a lot of research since then, and they don't know," Honaker said.

Michigan authorities defend their methods, however.

"It is an evidence-based approach … but we're very sensitive that new warnings about new risks can be very painful for parents who lost infants who thought they were doing everything right at the time," said Sandra Frank, director of Tomorrow's Child-Michigan SIDS, an unusual state-private organization with a dual mission of educating to prevent infant deaths while also supporting and counseling families who've lost babies.

Parents often battle with coroners increasingly reluctant to sign off on SIDS cases. Many have been successful.

Rudy and Melissa Haberzettl: Melissa Haberzettl, 29, of Colorado Springs, Colo., knew something was wrong when the county coroner ruled that her 3-month-old son, Jake, died of viral pneumonia in February. Death by pneumonia is very rare for otherwise healthy infants. Melissa Haberzettl, 29, of Colorado Springs, Colo., was convinced the coroner in her county had made a mistake in ruling that her 3-month-old son, Jake, died of viral pneumonia in February.

"My husband and I are both physical therapists, so we have many connections in the medical field who all agreed with us that this was a ridiculous diagnosis. He had no symptoms, no fever, no change in feeding or eating patterns, nothing," Haberzettl said.

"The coroner told us that Jake probably did not die of viral pneumonia. But there was a virus present in his system so that is what they were calling it, because SIDS is a diagnosis of exclusion. Even if they could not conclude that the virus caused death, it was not called SIDS by definition. Silly, right?" she said.

She urged county officials to reconsider, and they agreed to a consultation by Krous, the San Diego pathologist and SIDS expert. In June, Krous ruled the death was from SIDS, and Jake's death certificate will be amended.

"The most common reason I'm consulted is because a baby was clinically well, by all accounts. There are exceedingly few disorders in which a baby is well and then, the next minute, the baby is dead," Krous said. "If the baby was well, most of the time I will make the diagnosis of Sudden Infant Death Syndrome."

Haberzettl said she's grateful that Jake's case was clarified. But she's become irritated with the erratic standards for investigating the deaths of children.

"I find it rather frustrating," she said. "Things that used to be called SIDS are being called something entirely different. I don't know why. How can it be called one thing in one county and something completely different in another? It's crazy."

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