This article appears in August Family magazine.
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Babies are still dying from preventable sleep-related causes at levels that have not improved for about 20 years. In response, experts are calling for a national surveillance system to figure out what works best to promote safe sleep effectively.

“Sleep-related infant death is a much bigger problem that most people think,” said Dr. Kyran Quinlan, associate professor and division director of general pediatrics at Rush University Medical Center in Chicago. “Ten babies die in the United States every day. Since the plateau started in the late 1990s, over 50,000 babies have died. For families, doing the right thing, the safe thing for their baby may mean less sleep in the first several months of the infant’s life. This is the critical period where the risk skyrockets.”
Stagnant numbers

The 1994 Back to Sleep campaign resulted in a significant change in sleep position and a decline in these deaths.
“But by the late 1990s, the numbers stalled. It is clear that despite many efforts, including a revamped Safe to Sleep campaign, many families are not practicing safe sleep for their infants,” Quinlan said.

Quinlan and his colleagues at Rush covered the issue in a June JAMA Pediatrics article finding that “even when families know they are being video recorded as part of a study, babies frequently end up in unsafe sleep situations. Bedsharing is still a common practice, which increases the risk of an infant dying,” he said.

Despite national recommendations, not all infants are consistently placed on their back for sleep, said Dr. Susan Nofziger, pediatric hospitalist and clerkship director at Akron Children’s Hospital, and clinical associate professor of pediatrics at Northeast Ohio Medical University.

“More recent phone and in-person surveys have shown that certain culture beliefs or concerns about infant comfort and choking may make families more likely to place their infants prone for sleep,” Nofziger said.

Families likely underestimate the risk of sudden infant death, Quinlan said.

“Part may be because this is in a way a silent killer. By that I mean, people do not hear about them anywhere. These deaths do not make the news. They are not in the paper or even online. Families may think they do not happen often,” he said.

The perception that the issue has been solved may also be because of a recent shift in the categorization of these deaths, Quinlan said: “With death scene investigations happening more now than ever before, ‘suffocation’ has replaced ‘SIDS’ (sudden infant death syndrome), but the total number of deaths has not changed. So a family may hear or read that SIDS deaths have declined dramatically. And that is true, but only because medical examiners and coroners are more correctly calling these suffocation deaths.”
National registry
Currently we do not have an easily accessible source of information on the details of the circumstances in which the infants died, Quinlan said. A national surveillance system to study important aspects could offer insights to prevent these deaths.

It could include questions such as: What position was the baby in? Where was the baby sleeping? Was the baby bedsharing? Are these deaths happening in certain geographic areas more frequently than others?

“The CDC is building such a system called the Sudden Unexpected Infant Death Case Registry. So far 16 states and two jurisdictions are funded to collect this information. This covers about 30 percent of all sudden unexpected infant deaths right now. And this is growing,” Quinlan said. “Hopefully in the near future this may grow into a national registry which will serve as a reliable surveillance system with rich details to allow tracking, research and evaluation of programs.”