LITTLE ROCK, Ark. — Arkansas continues to have one of the highest infant mortality rates in the country, and as data is collected from a statewide Infant & Child Death Review Program, researchers say many of these babies’ deaths may have been prevented through education and a few simple steps.
Too Many Cases
“This is where they come,” Pulaski County Coroner Gerone Hobbs said, pointing to a thick freezer door with a thermostat set at 39 degrees inside the morgue.
In Hobbs’ work life, he’s surrounded by death. But some cases are tougher for the Pulaski County Coroner than others.
“It’s hard just standing here thinking about it,” he said, looking at the small, white body bag used for children. “It’s many cases that we use this bag.”
“Too many?” this reporter asked him.
“Too many,” he said. “Last year alone we had like 19 SIDs or SUIDs deaths. That’s a lot for a county of our size.”
Safe sleeping is something he and other coroners didn’t think about a decade before when it came to infants’ deaths, designating most of them as sudden infant death syndrome or SIDS. It’s not preventable, with no single cause. It’s simply a tragedy.
“It’s changed a lot over the years,” Hobbs said. “Now we have the dolls that we use for sleep reenactments, so we can show the medical examiner exactly how these children were positioned when they were found. And too often, they weren’t in a safe sleep environment or they were co-sleeping with their parents. We’re seeing more and more that sleep plays a huge role.”
A Message Unheard
Dr. Pamela Tabor has been studying and struggling with the trends she’s been seeing in infant deaths for years.
“They just weren’t slept correctly, and those are heartbreaking,” she said.
Tabor is a key player in the Infant & Child Death Review Program in Arkansas. The group has analyzed dozens of children’s deaths since 2012, through sleep reenactments and investigations, hoping to find the trends that can ultimately serve to save lives.
“When you hear SIDS, that’s tragic and there’s nothing we can do to prevent it,” Tabor said. “It’s sort of a hopeless feeling. But when we break them down between SIDS and those that could have actually been prevented, over 90 percent of these were preventable deaths for sure. Those deaths are not SIDS they’re SUIDS.”
SUIDS is Sudden Unexplained Infant Death Syndrome, unexplained until further investigation can find a cause. In the case of the death review program in Arkansas, more often than not there is an explanation for what caused these children’s deaths, according to Tabor.
The program can only review certain types of infant deaths, those not involved in a criminal case, for example. Since 2012 they’ve reviewed 119 deaths, of those half have been infants. Sudden Unexplained Infant Death, or SUIDS, has been the preliminary cause in 88 percent of those cases.
Investigators have found 60 percent of those involved unsafe sleep environments, while co-sleeping was listed as a contributing cause in 41 percent of cases.
“This is what is killing our children, and the most heartbreaking thing is it is preventable,” Tabor said.
According to Tabor, more and more coroners across the state are becoming educated and trained to conduct SUID reenactments like those used in the Pulaski County Coroner Office. When coroners are called to the scene of an infant death and it appears to have happened while the child was sleeping, they will obtain permission from the parents to conduct a sleep reenactment.
Those who have received training have a SUID kit, which includes a camera, a posable doll and other materials. The parents walk the investigators through their children’s sleep positions to help give medical examiners a clear picture of what the parents discovered and when. According to Tabor, those reenactments are revealing that the majority of deaths originally labeled as SIDS could have been prevented with safer sleep environments.
“I think for a long time we’ve used the term SIDS to alleviate any guilt or additional trauma the parents might feel by learning their child’s death could have been prevented,” Tabor said. “But we’re also depriving these parents of becoming advocates for safer practices. We’ve had so many parents who’ve become safety advocates about wearing helmets or safe swimming because of how it has affected their children. But a lot of times, these parents of infants are told by well-meaning coroners that their child’s death couldn’t be explained.”
Safety, Prevention and Education
“We’re going to put her in the crib,” Susan Cohen said, instructing the mom-to-be to place the baby doll in the crib.
Cohen works as the Manager of the Injury Prevention Center at Arkansas Children’s Hospital. Today, she’s walking us through the safe sleeping instruction they offer to parents who want the help. And according to Cohen, it’s one issue parents can’t afford to put down.
“There has been such a surge of children/infants that we have seen in the ER or that have not made it due to co-sleeping or not having safe sleep environments,” she said. “There was a point a couple of years ago that we recognized it was a crisis, and we started developing ways to educate parents on what the American Academy of Pediatrics recommends.”
Convincing doting parents that a bare crib and babies on their backs create the safest sleep environment can be tough, Cohen said, especially when they look at designer photos featuring high-end baby bumpers and cute pillows on Pinterest.
“We have a long way to go,” Cohen said. “We ask parents to decorate the room and not the crib. When I was raising my kids we had the baby bumper, pillows and a matching blanket. We had the whole package. We were just lucky nothing happened to our children, because we didn’t know better. But when we know better, we do better.”
According to Cohen, they recommend a crib with a bare, relatively firm mattress covered in a tight-fitting sheet. The rails on the crib should be narrow enough that a soda can will not fit through the slats. If a family can’t afford a crib, the prevention center recommends a pack-n-play with the same bare necessities.
“Babies aren’t creatures of comfort. They’re not accustomed to sleeping on plush mattresses and pillows until we introduce them to that. This has been proven to be the safest sleep environment for your baby. We see that over and over again in the scientific research,” she said.
Generational divides can cause a rift for safe sleeping techniques as well, Cohen said, with well-meaning grandparents and caretakers falling back to old habits and skipping the safe sleep steps by placing babies on their stomachs or sides to sleep as they did decades before.
“It’s a false sense of security,” Cohen said. “We know that many people slept their children on their stomachs and a child didn’t die. But there’s plenty of data now showing that children have died and the contributing factor was being placed in an unsafe sleep position. Again, it’s a false sense of safety that because it didn’t happen then, it won’t happen now.”
Cohen said the Injury Prevention Center has begun to host Generations In Families Talking Safe Sleep, or GIFTSS. It’s a program for young, expecting mothers and their “mama ducks” (older female mentors) to attend safe sleep and parenting classes to cover current safety recommendations. It’s an attempt to bridge the communication and information gap without causing friction in families.
“It’s a way for us to try and educate everyone involved,” Cohen said. “Family support can be really important, and we want to make sure that these new mothers and perhaps a grandmother are on the same page.”
According to Cohen, a renewed interest in younger mothers who want to breastfeed while sleeping with their child throughout the night is another trend safe sleep advocates contend with.
“We encourage moms to get up and breastfeed then lay back down,” Cohen said. “We certainly encourage breastfeeding, but we don’t encourage co-sleeping. While breastfeeding can reduce SIDS/SUIDS risk, co-sleeping absolutely increases the risk.”
Cohen said she’ll often hear the argument that women in other cultures or third world countries often co-sleep with their infants. But according to Cohen, they’re comparing apples and oranges.
“These cultures often sleep on thin, hard mats on the floor. There’s no real risk of suffocation on a plush blanket or pillow. That’s just one environmental difference,” Cohen said. “By and large, most Americans are talking about sleeping with their children on some type of mattress. We want parents and infants to share a room, but not a bed.”
According to the research and the American Academy of Pediatrics, baby bumpers, stuffed animals, pillows and cozy blankets can all pose a risk for suffocation, wedging and deadly sleep.
“We’re raising our hands going we could cut our infant death rate literally by at least half if we could just get this message out. And it’s so frustrating,” Dr. Tabor said.
While these researchers feel they’re exposing the truth behind sudden, unexplained infant deaths, there are still no safe sleep instruction policies for hospitals across the state or discharge requirements for new parents before heading home.
“It varies from hospital to hospital on what is and isn’t taught,” Dr. Tabor said. “UAMS and Arkansas Children’s Hospital both require training and for safe sleep to be modeled. But then I’ve heard some parents say they’re told by their nurses after delivery that sleeping with their children is fine. There’s good and bad information out there and there’s no standardized approach in hospitals in Arkansas.”
Tabor would also like to see baby bumpers outlawed in Arkansas, with an outright ban or a retailer commitment to quit selling the devices, which she said continue to be shown to be a danger to children year after year.
SIDS vs. SUIDS
According to State Health Department data from death certificates filled out by coroners across the state, 280 babies have died due to SIDS since 2010. Another 339 deaths have been attributed to SUIDS in that time. That’s a total of 619 children. It’s enough to start their own school district, and it’s more than the entire student body of Batesville High School.
“In four years, I can tell you I have not seen a SIDS case,” Dr. Tabor said. “I think coroners have been wary of labeling these as anything but SIDS to not be unkind to the parents. But I think SIDS is far less common than we say it is. And I think preventable deaths are far more prevalent than we might imagine.”
Gerone Hobbs can’t say he’s every met a parent who had an explanation for why they woke up to an unresponsive baby.
“The wailing of emotions coming out is what stays with you,” he said. “I done everything right, some say, never knowing they didn’t.”
“Are you tired of seeing kids die this way?” this reporter asked Hobbs.
“I am. I’m tired of seeing kids die,” he said.
And all Hobbs can do is hope that parents hear the message and keep their kids from ending up in his hands.
For those who need financial assistance, want training or would like to participate in the GIFTTS program you can contact the Injury Prevention Center at Arkansas Children’s Hospital at (501) 364-3400.
For more on the Working 4 You initiative, click here.