(This story was published on July 18, 2010, by the (Binghamton, N.Y.) Press & Sun-Bulletin.)
Dr. James Terzian became concerned years ago when he started to notice an unusually high number of babies at the morgue who were dying for no clear reason.
After taking a closer look and increasing communication with death-scene investigators, he discovered most of the deaths were completely preventable. In the past five years, 25 infants in the Southern Tier died because they were placed in an unsafe sleeping situation. They’d been put to sleep on their stomach, in a crib with stuffed animals or blankets, or in a bed with a parent or sibling — and suffocated — claiming more infants locally than any other cause.
Deaths previously attributed to Sudden Infant Death Syndrome, Terzian realized, could be avoided.
“We’re learning most of these deaths are explainable once you have the combination of the complete scene investigation, complete medical history and a complete autopsy,” said Terzian, the Lourdes Hospital pathologist who performs most baby autopsies in the Southern Tier. “If those things are done, and done well — completely — then I think the number of cases that would fall into the classic definition of SIDS would be very small.”
Years ago, if an infant died while sleeping, it was attributed to SIDS — a diagnosis of exclusion only to be made if the death could not be explained after a thorough investigation. But in 1994, the U.S. launched the Back to Sleep campaign, urging parents to put their babies on their back to sleep to avoid accidental suffocation. By 1999, the rate of SIDS had dropped by more than half, and researchers realized that many SIDS deaths might not actually be unexplained.
Still, SIDS is still listed as the leading cause of death among infants, according to the Centers for Disease Control and Prevention, because not all areas of the country scrutinize baby deaths the way Terzian and others locally are scrutinizing them
“Unfortunately, the state of death investigation in our country varies so much — from state to state, from city to city, from rural area to city — that trying to analyze the data with the mish mash of death investigation processes creates problems,” Terzian said. “If you have a full-fledged medical examiner’s office with a board-certified forensic pathologist, medical examiners whose job it is to find out the cause, mechanism and manner of death, your data is probably going to be much more accurate and complete than if you rely on, let’s say, a lay coroner and a local doctor or pathologist who does an autopsy who’s got a lot of other things to do, and doesn’t keep up on this particular subject.
“They just don’t have the resources in our country to do this investigation the way it should be done.”
Terzian said of the 35 infant deaths he has investigated since 2005, 21 suffocated: 12 due to co-sleeping sleeping with a parent or caretaker and nine were attributed to inappropriate bedding.
Among the other 14, nine died of natural causes, one was a homicide, and four were undetermined.
“There were still two or three others (undetermined deaths) where I had my suspicions, but I couldn’t prove anything,” Terzian said. “For example, a baby had LIVOR settling of blood on the front of the body and it was settled there, so you knew the body was face down. And yet the parents swore they put the baby to bed face up. Well, it’s hard for me to accept that.”
In Chemung County, where bodies are sent to the Monroe County Medical Examiner’s Office to be autopsied, four infants died because of unsafe sleeping conditions in the past five years, bringing the Tier total to 25.
Though New York has only been tracking these types of deaths for a few years, 69 infants across the state died because of an unsafe sleep environment in 2009, and 40 have died so far this year.
A local push
Though death investigations are largely varied, local officials have made prevention and consistency in the way deaths are examined a priority.
In 2008, the Broome County Health Department received a grant from the Office of Children & Family Services to create a Child Fatality Review Team one of several in the state. The teams are comprised ‘ of representatives from Child Protective Services, OCFS and the health department, as well as members of law enforcement, doctors, coroners and attorneys.
“(We) review cases of fatalities of all children under the age of 18 in order from a public health standpoint to try to figure out what those types of deaths were,” said Colleen Coddington, director of Broome County’s Child Fatality Review Team. “And (to determine if) there is any type of education or intervention, primary intervention that we could do in order to decrease the number of child deaths that we were seeing.”
Since the team began reviewing cases in March 2009, nine of 11 infant deaths were ruled to have been caused by an unsafe sleeping environment. Chemung County, which launched a child fatality review team last year, has made a determination on only one case an infant who died in a co-sleeping situation where alcohol was involved, said director Kimberly Ripley.
“What the review team is trying to do is get consistency in the community as far as investigating deaths, how they’re being reported, so we can actually truly get an idea of what’s going on,” Coddington said.
A challenge facing death-scene investigators is that, in infant deaths, the scene is crucial and almost always altered. Babies are typically taken from the home by paramedics, and pronounced dead in the emergency room, said New York State Trooper Steve Anderson.
The review team, whose members are all involved at some point in the death investigation, try to piece together details during post-investigation meetings in hopes of coming up with the most accurate picture of what happened. For instance, the Child Protective Services representatives might have information of which police investigators weren’t aware.
Though Dr. John Prindle, a Broome County coroner, couldn’t provide details of the case, he said one infant death reviewed by the team and initially ruled SIDS was later changed to accidental asphyxiation due to sleeping conditions.
Prindle admitted years ago he would code many infant deaths, which might have been caused by accidental asphyxiation, as SIDS in order to spare a family’s feelings.
“SIDS has decreased because we’re looking for alternative explanations,” he said. “Probably a vast percentage of the SIDS were co-sleeping or asphyxiation from improper cribbing.
“Historically, when you said SIDS, it meant you had a 1-year-old who woke up was an easy thing. You just wrote SIDS. I’ve written a lot of them over the years not lately.”
As health officials strive to prevent these avoidable deaths, there’s, been an increased push toward appropriate coding something they say is crucial to prevention.
“If we can generate information about why people die, maybe we can help the next baby,” Terzian said. “It’s just like car accident victims. They died in a car accident why do you want to do an autopsy? Cause maybe there’s something about that car design that we could change so the next car accident doesn’t kill a person That’s how seat belts developed. That’s how soft padding on dashboards developed. You learn, and you do things better.”
Preventive measures
As the numbers of needless deaths came to light over the last few years, local officials spearheaded preventive efforts, hoping to get word out about how dangerous a comforter in a crib, or sleeping with your infant, could be.
“A few years ago, I developed a lecture and went to both hospitals to have a big learning lunch,” Terzian said. “I showed the data, I talked to the nurses. And they, of course, want to do the right thing for the patients.”
Both Lourdes and Wilson hospitals’ maternity wards try to educate mothers about sleeping practices before they leave the hospital.
Marianne Koytek, nurse manager at the maternity and newborn nursery at Wilson Memorial Regional Medical Center, said she starts by taking babies from sleepy mothers’ arms and putting them in the crib modeling appropriate behavior.
The limited amount of time — sometimes only 24 hours — nurses get to spend with mothers before they’re discharged is challenging, especially because some are convinced they don’t need to put their baby to sleep on their back, or that co-sleeping is harmful.
“Their mothers did it,” Koytek said. “Their grandmothers did it. And, honestly, most of the people who work here did it, ’cause we’re all older.
“I tell them ‘but I’ve seen babies come in (to the emergency room),’ and that scares them. Sometimes you have to scare them a bit.”
Karen E. Roeske, perinatal nurse manager at Lourdes Hospital, says she recommends that patients who want to have a decorative crib hang stuffed animals outside of the crib. A safe-sleep crib is stark no blankets, no stuffed animals, no bumpers, just a tight fitted sheet. Instead of using a blanket, parents should outfit their babies in sleep clothing, such as a one-piece sleeper, nurses say.
In addition to going over safe sleeping practices with mothers, nurses also send them home with literature on the topic.
Caseworkers from Child Protective Services have made it a priority to start checking sleeping situations in all houses they visit with a child under age 1, regardless of the reason they’re there. They also warn parents of the dangers of co-sleeping.
“If there are stuffed animals, too many blankets, a bumper in there, I advise them, of the risk,” said Sheila Stanbro, a CPS caseworker. “Most of them are like, ‘oh, OK,’ and they correct it. I don’t think I’ve encountered any resistance.”
Though clients often correct the problem when caseworkers are there, sometimes during a subsequent visit, the blankets or stuffed animals are back. Sometimes, economics are an issue, as blankets can be cheaper to obtain than appropriate sleepwear, Stanbro said. And many clients worry because they don’t believe they have sufficient heating. And some are using older, unsafe cribs.
But co-sleeping which claims more lives than unsafe cribs spans all socioeconomic classes, CPS Director Julia Hep-worth said, adding that she’s seen people with perfectly appropriate cribs take their babies to sleep with them.
The hardest part is getting the message across, most agree, is that many parents just don’t think it will happen to them to their baby.
“That’s where we’re losing people,” Hepworth said. “Here, we do public service campaigns, we give them education at the hospitals, they sign a document that says ‘I received this education.’ But everybody thinks it won’t happen to them. And that’s the great tragedy.
“Really, what it boils down to is: Do you want to play Russian roulette with your child? ‘Cause your child might be OK. Or they might be the one that dies.”