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

SIDS is still a tragic mystery, despite claims that the 'cause' has been found
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Last week, multiple headlines and social media posts claimed 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 results are not game-changing as they originally were, at least not yet.

The study was published earlier this month in the journal eBioMedicine. Australian researchers compared infants suspected of having died of SIDS with control groups of living infants and infants who died of other causes, using blood samples taken from newborns as part of a screening. SIDS is characterized by the unexplained death of a child under the age of one, often while sleeping. The team looked at total protein levels as well as an enzyme called butyrylcholinesterase (BChE).

Among other things, BChE plays a role in regulating the autonomic nervous system, the nerves that subconsciously drive many bodily functions, including breathing and heart rate. Many researchers, these authors included, theorize that autonomic dysfunction may be an underlying cause of SIDS. If so, they further speculate that subnormal levels of BChE could be a sign, or even a possible trigger, of this dysfunction. And sure enough, the team found that children who died of SIDS had significantly lower levels of BChE shortly after birth than controls.

Early media headlines about the study announcement as having identified the “reason why infants die of SIDS”. Soon, Twitter users described the study as finding the real cause of SIDS. But while this finding is important, its findings have been overstated and poorly characterized, according to Jonathan Marron, a bioethicist at Harvard Medical School. Marron is not specifically an SIDS expert, but he is also a clinical pediatrician and researcher.

“Science progresses gradually. This study is an interesting and promising development for a devastating and poorly understood entity, SIDS. It’s not a magic bullet, however, nor can we say today that 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 at least one of the first articles has since been update as well.

It probably wasn’t just sensationalism or a weak science literacy that drove the initial coverage of this research. SIDS has always involved a lot of stigma, with parents, especially mothers, often being blamed for the deaths of their children. Other times, life-saving interventions like childhood vaccines have been 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 that this stigma would eventually die down, since the “real cause” turned out to be something completely beyond anyone’s control.

“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 response, because then that’s appealing,” Marron said. “It’s understandable that people are thrilled to hear that scientists have 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 SIDS. And it was this tragic loss that motivated his research. (Gizmodo has reached out to Harrington for comment, but has not yet received a response.)

The work of Harrington and his team could yet be as monumental as early headlines proclaimed, one day. Even if we found a clear cause of SIDS, it wouldn’t necessarily change the advice that new parents regularly receive on how to reduce the risk of SIDS for their children. Importantly, research has shown that safe sleep practices, such as keeping infants on their backs and avoiding overheating, can reduce the risk of SIDS. And following public health campaigns emphasizing these practices and other advice beginning in the 1990s, rates of SIDS in the United States and elsewhere have continued to decline over time.

Of course, it’s not the first 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 keep a skeptical eye out for the science news headlines and make sure they get the broader context of the research. in question. Journalists should always be careful about what they broadcast to the world, notes Marron.

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

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