Sudden Infant Death Syndrome, or SIDS, is a devastating condition that’s still poorly understood, so when new research is uncovered, it can feel like a very big problem — especially if that research appears to offer a way to save children’s lives. Posts on social media cheered one of these new studies this week, heralding the research as determining why hundreds of children die unexpectedly each year.
But although the study points to a promising direction for future research, it’s not a panacea, experts say. Rachel Munn, a researcher who studies sudden infant death syndrome at the University of Virginia, said in an email to the edge. She said the increased interest in the study was understandable, but not justified.
Sudden infant death syndrome refers to the sudden and often unexplained death of a child one year of age or younger. It’s largely a mystery, and doctors don’t have good answers as to why it happens. Parents of children who die of unexplained causes are often the focus of suspicion, which can leave parents feeling more guilt and bereavement than they actually feel. Medical Research in SIDS Over the past few decades, he’s focused on prevention: There is a link between how babies sleep and SIDS, so parents are encouraged to put babies on their backs and on hard surfaces.
But even with Safe Sleep campaigns, which have been effective in reducing infant mortality since the late 1980s, death rates from SIDS have remained roughly the same in the United States for years. Without good explanations for why the deaths occur, parents of young children often spend months fearing this could happen to their children.
That’s likely why the new study hits this chord on social media. His findings were also exaggerated by early coverage that claimed it showed the obvious cause of SIDS. This is common in scientific studies, which are sometimes presented by press releases, researchers, or superficial reports as being more interesting than they actually are. It is a problem that can give people unrealistic expectations for solutions and undermine confidence in science in general.
Take a closer look at this SIDS study, published in the journal EBioMedicine Last week it was shown to be very small – it included blood samples from 67 infants who died and 10 who survived. The analysis showed that infants who died of SIDS had lower levels of an enzyme called butyrylcholinesterase, which researchers believe is involved in neurological function. This does not necessarily mean that the enzyme is responsible for SIDS or that it has a role in the infant’s death. Although there was a statistical difference between the enzyme levels between the two groups of infants, there was overlap between them. Moon said that would make it difficult to design an accurate blood test to check whether an infant had levels of the enzyme linked to SIDS.
I’ve seen this report several times in my feed today so wanted to comment.
This is interesting (and promising) work but the report (https://t.co/uhyRmmZc9e) greatly exaggerates the search results.#SIDS It’s horrible, but we have to be careful when sending messages here
1 / x https://t.co/uVx7sExjrp
– Jonathan Marron MD MPH (@JonMarronMD) 12 May 2022
Individual scientific studies rarely provide clear answers, especially to complex issues such as SIDS. Science is an iterative process, and research builds upon itself over time. Research into the more fundamental biological causes of devastating issues like SIDS is important to help destigmatize bereaved parents and help offer potential solutions. Any new discovery that points to a promising direction is beneficial. But it’s also important to be clear about the limitations of any given research. In this case, there is still a long way to go before a screening test for SIDS is available.
“This is progress, which is why we should be optimistic, but it is not a complete solution,” Alison Jacobson, CEO of the nonprofit organization First Candle that focuses on small island developing states, said in a statement. “As bereaved parents, we understand how parents whose children have died of this mysterious disease desperately want answers and new parents want assurance that it will not happen to their children. We pray that one day it will happen but that is not the case today.”