SIDS is still a tragic mystery, despite claims that the ’cause’ has been found

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Last week, numerous headlines and social media posts declared that scientists had finally found the “cause” of Sudden Infant Death Syndrome (SIDS). Unfortunately, the reality is a bit more complicated. While the research could one day lead to important discoveries in predicting or treating this devastating syndrome, the findings aren’t as groundbreaking as they were originally proposed — at least not yet.

The study was: published earlier this month in the journal eBioMedicine. Researchers in Australia compared babies believed to have died of SIDS with control groups of live babies and babies who died of other causes, using blood samples from newborns as part of a screening program. crib death is characterized by the unexplained death of a child younger than one, often while sleeping. The team looked at total protein levels along with an enzyme called butyrylcholinesterase (BChE).

BChE plays a role, among other things, in regulating the autonomic nervous system, the nerves that unconsciously control many bodily functions, including breathing and heartbeat. Many researchers, these authors included, theorizing that a dysfunction in the autonomic system could be an underlying cause of SIDS. If so, they speculate further, lower-than-normal levels of BChE could be a sign — or even a possible trigger — of this dysfunction. Sure enough, the team found that children who died of SIDS shortly after birth had noticeably lower levels of BChE than controls.

The first headlines about the study announced has established it as the “reason why babies die of SIDS”. soon, Twitter users described that the investigation had found the true cause of SIDS. But while this discovery is important, the findings have been exaggerated and mischaracterized, according to Jonathan Marron, a bioethicist at Harvard Medical School. Marron is not specifically an expert on SIDS, but he is also a clinical pediatrician and researcher.

“Science is progressing step by step. This study is an interesting and promising development for a devastating and poorly understood entity, SIDS. It’s not a panacea, though, and we can’t say today that we’re sure we’ve found the cure for SIDS,” Marron told Gizmodo in an email.

Every study comes with its limitations, and this one is no exception. For one, the sample size is very small, with only 26 infants who died from SIDS included in the study. SIDS is thankfully a rare condition, so the numbers are understandable, but it does mean that any findings should be viewed with added caution until they’re validated with further research. The study also only found an association between BChE levels and SIDS, not an established cause-and-effect relationship. Low BChE may very well be a signal or driving trigger of SIDS risk, but this research alone can’t tell us that. And even if this connection is every bit as crucial as we hope, it would still take years to take advantage of it, such as by finding a safe treatment that could increase BChE levels or otherwise prevent SIDS.

Marron notes that the authors of the study, while understandably excited about their work, were more cautious about the implications of their research than the early headlines and subsequent social media chatter surrounding it.

“I’m not sure of the cause for this—it could be an example of those writing the media reports not understanding the work and its limitations, but it might also be a representation of the fact that sensational stories and sensational headlines drive clicks,” Marron said. Later articles have since been more open-eyed about the study’s warningsand since then at least one early article has appeared updated also.

It probably wasn’t just sensationalism or poor scientific literacy that drove the early coverage of this study. Sudden Infant Death Syndrome (SIDS) has in the past brought a lot of stigma, with parents, especially mothers, often blamed for the deaths of their children. Other times have been life-saving interventions such as childhood vaccines scapegoat by antivaxxers and supportive or gullible media. In many of the tweets discussing the research, there was a common theme among readers who hoped this stigma would finally disappear, as the “true cause” turned out to be something no one was in control of.

“We are uncomfortable with uncertainty – perhaps even more so when it comes to something as important and heartbreaking as the death of a child. Finding a single cause, a single answer, is then attractive,” Marron said. “Understandably, people would be excited to hear that scientists had found the cause of SIDS.”

Another compelling part of the story is that the study’s lead author, Carmel Harrington, lost her own child to cot death. And it was this tragic loss that motivated her research focus. (Gizmodo has reached out to Harrington for comment, but has not heard anything yet.)

The work of Harrington and her team could one day be as monumental as early headlines claimed to be. Even finding a clear cause of SIDS does not necessarily change the advice new parents are routinely given about how to lower their children’s risk of SIDS. Importantly, research has shown that safe sleeping practices, such as keeping babies on their backs and avoiding overheating, can reduce the risk of SIDS. And following public health campaigns that emphasized these practices and other tips from the 1990s onward, annual prices SIDS in the US and elsewhere have continued to decline over time.

Of course, this isn’t the first piece of science to be overhyped by journalists or misunderstood by readers. While no one is ever completely immune to bias, this episode should remind people to skeptically keep an eye on the splashy science news headlines and make sure they get the larger context of the research in question. Journalists should always be careful what they send into the world, Marron notes.

“I hope journalists will recognize the responsibility they have and the influence they can have on the public,” he said.


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