Despite decades of efforts, babies are still dying from SIDS

In the years following the 1994 launch of the Safe to Sleep Campaign, who urged parents to put their babies on their backs at bedtime and to keep their cribs free of pillows, bumpers, blankets, stuffed animals and anything else that might present a risk of choking, cases of Sudden Infant Death Syndrome (SIDS) have dropped by more than 50 percent. But then the decline stopped.

Some 3,400 babies under the age of one still die suddenly and unexpectedly every year. Of these, the number of infant deaths officially attributed to SIDS is likely an underestimate, experts say. In most cases, parents simply find their baby unresponsive in the crib — and autopsy practices aren’t standardized — so most of these heartbreaking deaths remain a mystery and aren’t always classified as SIDS.

“The [SIDS] rates have been totally flat” for the past 20 years, says Fern Hauck, associate professor of family medicine and public health sciences at the University of Virginia School of Medicine and researcher in SIDS. “I think it’s important for public health professionals to know that these numbers aren’t going down.”

Experts say it’s important to reinforce safe sleep messaging with new parents and accelerate research into possible physiological factors – for example, genetics and brain abnormalities that could alter an infant’s ability to sleep. waking up when the child’s breathing goes wrong.

Genetics may make some babies vulnerable to SIDS or ‘cradle death’, study finds

The cause of some deaths is obvious, such as accidental strangulation or suffocation, such as when a baby’s head is wedged between the mattress and the side of the crib. But in most cases, the cause is unknown.

Most academic and clinical researchers still prefer the term SIDS for these infant deaths, but the American forensic community – coroners and medical examiners – tends to label them as unknown or undetermined.

Such practices have made SIDS numbers look smaller than they are, experts say, arguing that there needs to be more consistency in terminology to get an accurate picture. Even the Centers for Disease Control and Prevention use chart which include separate statistics for SIDS and ‘unknown cause’ categories.

“If you just look at death certificates that say SIDS, they’ve gone down dramatically, but the reality is that many deaths that aren’t labeled SIDS would have been considered SIDS before 1992,” says Carl Hunt, research professor of pediatrics. at the F. Edward Hébert School of Medicine at Uniformed Services University in Bethesda, Md., and Chairman of the Board of the American SIDS Institute. “They are now among the largest number of [unknown cause] death.”

“SIDS is underrated,” says Hauck. “It’s not going away. They just changed their name.

She and others say it’s time to find new ways to emphasize safe sleep advice — she creates short videos that hospitals and doctors can share with new parents, for example — and to learn why some parents have stopped following them. Along with sleeping on your back in a crib that lacks everything but a firm mattress and baby, experts are also urging parents to avoid bed sharing and smoking during pregnancy and around the baby. Breastfeeding (with the baby still sleeping in the crib afterwards), providing a pacifier (but not on a string or cord) and keeping the crib in the parent’s room are measures that appear to reduce the risk , according to the American SIDS Institute.

SIDS deaths are falling, but many infants still don’t sleep on their backs

Even so, says Hauck, sometimes sleep-deprived parents ignore the advice.

“People make decisions in the middle of the night when the baby is crying and they’re exhausted,” she says. “So they will take the baby to bed with them or put the baby on their stomach because they may have heard from a friend that it will calm the baby down. If a baby is put on their stomach for the first time, it is more likely to die. They’re not used to being in that position, so if they get in trouble, their brain doesn’t tell them to react properly.

Marion Koso-Thomas, program scientist for the Global Research Network for Women’s and Children’s Health at the Eunice Kennedy Shriver National Institute of Child Health and Human Development, points out that the internet is full of misinformation about health products. unsafe sleep and ineffective monitoring devices.

“We have new generations of parents who go online and see sites with new devices, like bumpers, and they think, ‘That’s cool, I’m going to try this with my baby.’ And that might not be safe,” she says. “With social media, they have a whole new world of getting information, and some of it is alarming.”

Additionally, parents can get advice from sources who still believe in traditional but outdated practices, she says.

“There are caregivers and grandparents where culture plays a role, and they influence mom’s decisions,” Koso-Thomas says, adding that pediatricians are a key source for new parents and should be assertive for disseminate sleep information safely.

“We were hoping pediatricians would be some of the strongest advocates for safe sleep, but sometimes they just don’t have the time,” she says. “It’s not just that people don’t hear it, it’s that they don’t hear it from the right people.”

“A lot of parents know, but every generation needs to be educated,” says Michael Goodstein, division chief of neonatal medicine at WellSpan Health and clinical professor of pediatrics at Pennsylvania State University. “There are grandparents who were told in their day to put their babies on their stomachs, and they can influence the decisions parents make.”

Beyond bolstering public messaging, the scientists also want to expand research into physiological factors common to SIDS infants, with the future goal of identifying vulnerable babies in advance.

“We learn more every year,” says Hunt. “We know there is a familial risk – parents who have had one baby die are more at risk of having another. And many genetic studies point to the brainstem, the area of ​​the brain that controls automatic functions , such as breathing and heart rate control. [which affect] … arousal, the final protective mechanism that seems to malfunction in infants who die suddenly and unexpectedly.

Studies have already identified genetic variants among SIDS deaths related to cardiac, respiratory and neurological functions, among others, as well as brain abnormalities which can affect arousal. The researchers believe that the cause of death stems from a lack of awakening.

“I put a healthy baby to sleep on my stomach [stomach] position, and he begins to breathe” the air he exhaled, says Jan-Marino (Nino) Ramirez, director of the Center for Integrative Brain Research at Seattle Children’s Hospital, which studies SIDS and brain function. “Carbon dioxide increases and the baby begins to suffer from hypoxia [or insufficient oxygen]. A normal cardiorespiratory system will respond and the baby will wake up. In SIDS, there is a dysfunction in this system. »

Swaddling babies is linked to an increased risk of sudden infant death syndrome

Ramirez believes that SIDS results from the interaction of environmental and physical factors.

“Certain genes associated with the cardiac and arousal system, as well as the immune system, affect the brain,” he says. “None of these genes are lethal on their own. Then an external stressor – putting the baby in a supine position to sleep – reveals the weakness. When the baby has to wake up, he can’t and the defect becomes That’s why the “Back to Sleep” campaign had an impact. Babies who didn’t have to wake up survived.

SIDS experts say 3,400 deaths a year is still too many.

“A lot of new moms think ‘this can’t happen to me,’ so they may not be following all the recommendations, but it can happen to anyone,” says Hauck. “We don’t want this to happen to anyone. It’s rare. But if it happens to you, it’s 100%.”

She recalls an experience that happened in 1995 when she was just beginning her research on SIDS. She received a call from a woman who had lost a baby to SIDS. It was the anniversary of the child’s death and the grieving mother needed someone to talk to.

“She was really struggling,” Hauck says. She remembers asking the woman when her baby had died. The answer shocked her. “She said 25 years ago,” Hauck says.

The message still haunts her today: “When you lose a baby to SIDS, it never goes away.”

About Mark A. Tomlin

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