This article was originally published on KFF Health News.
Samuel Hanke is a pediatric cardiologist in Cincinnati, but when you ask him for his title, he follows it by saying: “Most importantly, I’m Charlie’s dad.”
Hanke remembers the night 13 years ago when Charlie, then 3 weeks old, was fussier than usual, so he picked him up to soothe him back to sleep. With Charlie still in his arms, he sat on the couch, turned on the TV, and nodded off.
“We were kind of chest to chest, the way you see in pictures a lot,” Hanke said. But he didn’t realize Charlie’s airways were blocked. Too young to turn his head, too squished to let out a cry, Charlie died silently. The next morning, Hanke woke up to his worst nightmare. Years of medical school weren’t enough to prevent Hanke from losing Charlie to accidental suffocation.
Sudden infant death syndrome, a well-known term that describes unexplained but natural infant deaths resulting from an unknown medical abnormality or vulnerability, is the leading cause of unexpected deaths among infants in the U.S. It has long been among new parents’ greatest fears.
Rates for SIDS have declined since the 1990s, but a different cause of infant death — accidental suffocation or strangulation — has also been a persistent problem. That national rate for the past decade has hovered between 20 and 25 infant deaths per 100,000 live births, accounting for around a fifth of all unexpected infant deaths, according to the Centers for Disease Control and Prevention. Accidental suffocations and strangulations aren’t necessarily happening more often, some experts say; rather, fatality review teams have become better at identifying causes of death.
And the trend remains steady despite decades of public information campaigns imploring parents to take steps to keep their babies safe while sleeping.
In the mid-1990s, the National Institute of Child Health and Human Development launched its “Back to Sleep” campaign, to teach parents to lay infants on their backs to sleep. “There were tremendous results after ‘Back to Sleep,’” said Alison Jacobson, executive director of First Candle, a Connecticut-based nonprofit group focused on safe sleep education. Unexpected infant deaths dipped about 40% from 1990 levels, which was before that campaign launched, according to the CDC. “But then it plateaued,” Jacobson said.
The NICHD eventually broadened this message with other ways to limit risks beyond a baby’s sleep position with the “Safe to Sleep” initiative.
Some clear warnings from it: Infants shouldn’t sleep with blankets, stuffed toys, or bumpers that “can potentially lead to suffocation or strangulation,” said Samantha St. John, program coordinator for Cook Children’s Health Care System in Fort Worth, Texas. They also should sleep in cribs or bassinets — not on beds with siblings or in parents’ arms.
But these public health messages — contradicted by photos or videos circulating in movies and social media — don’t always find traction. Professional photos of infants, for example, too commonly show them peacefully snoozing surrounded by plush animals and blankets. St. John added that parents sometimes have preconceived ideas of how infants’ sleeping spaces should be decorated. “When you think of cribs and nurseries and things like that, you imagine the pictures in the magazines,” St. John said. “And those are beautiful pictures, but it doesn’t keep your baby safe.”
St. John said many parents know that babies should be on their backs to sleep, but warnings about strangulation by blankets or suffocation by sharing a bed with them sometimes fall through the cracks.
For instance, new parents, especially single parents, are more likely to accidentally fall asleep with their infants because of exhaustion, said Emily Miller, a neonatologist at Cincinnati Children’s Hospital.
The idea that sleeping with one’s baby is dangerous can also be counterintuitive to a new parent’s instinct. “We feel like being close to them, being able to see them, being able to touch them and feel that they’re breathing is the best way we can protect them and keep them safe,” said Miller, who is also an assistant professor at the University of Cincinnati’s Department of Pediatrics.
Organizations across the country are working to help parents better understand the true risks. Hanke and his wife, for instance, channeled their grief into Charlie’s Kids, a nonprofit focused on safe sleep practices for infants. The Hankes also wrote a book, “Sleep Baby, Safe and Snug,” which has sold about 5 million copies. The proceeds are used to continue their educational efforts.
Ohio, where Charlie’s Kids is based, in 2020 saw 146 sudden unexpected infant deaths, a classification that includes SIDS, accidental suffocation and strangulation, and other instances in which the cause is undetermined. That’s about a death for every 1,000 live births, according to the state’s health department. Thirty-six percent of those deaths were attributed to accidental suffocation or strangulation. Nationally, the rate of these unexplained deaths has declined since the 1990s, but, according to the CDC, significant racial and ethnic differences continue.
The particular risks for an infant’s accidental suffocation in many respects are situational — and often involve people at the lower end of the income scale who tend to live in close quarters. People who live in a small apartment or motel often share sleep space, said St. John.
Tarrant County has one of Texas’ highest rates of infant deaths — three to four each month — attributed to accidental suffocation.
So, organizations like the Alliance for Children in Tarrant County, which serves Fort Worth and parts of Dallas, have been providing free bassinets and cribs to those in need.
County representatives spoke during the state’s Child Fatality Review Team meeting in May and focused on the prevalence of infant deaths linked to accidental suffocation. For the past decade, data shows, the county has averaged 1.05 sudden unexpected infant deaths per 1,000 births, which is higher than both the state and national averages of 0.85 and 0.93, respectively. During a 15-month period starting in 2022, Cook Children’s Medical Center saw 30 infants born at the hospital die after they left because of unsafe sleeping environments.
Sometimes parents’ decisions are based on fears that stem from their environments. “Parents will say ‘I’m bringing my baby into bed because I’m afraid of gunshots coming through the window, and this is how I keep my baby safe’ or ‘I’m afraid rats are going to crawl into the crib,’” said First Candle’s Jacobson.
She understands these fears but stresses the broader context of safe sleep.
The key to educating parents is to begin when they are still expecting because they receive “a load of information” in the first 24 or 48 hours after a baby is delivered, said Sanjuanita Garza-Cox, a neonatal-perinatal specialist at Methodist Children’s Hospital in San Antonio. Garza-Cox is also a member of the Bexar County Child Fatality Review Team.
And once a child is born, the messaging should continue. In Connecticut, for instance, First Candle hosts monthly conversations in neighborhoods that bring together new parents with doulas, lactation consultants, and other caregivers to discuss safe sleep and breastfeeding.
And both Tarrant and Bexar counties are placing ads on buses and at bus stops to reach at-risk parents and other caregivers such as children, relatives, and friends. Parents are very busy, Garza-Cox said. “And sometimes, multiple children and young kids are the ones watching the baby.”
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