Sudden Infant Death Syndrome, or SIDS, is a devastating disease that is still very poorly understood. So when new research comes out, it can seem like a big deal, especially if that research seems to offer a way to save children’s lives. Social media posts applauded one such new study this week, announcing that the research identifies the reason why hundreds of babies die unexpectedly each year.
But while the study points in a promising direction for future research, it’s not a panacea, experts say. “There’s nothing definitive about this,” Rachel Moon, a researcher who studies sudden infant death syndrome at the University of Virginia, said in an email to The edge. The renewed interest in the study is understandable, she says, but not warranted.
SIDS refers to the sudden and often unexplained death of an infant one year old or younger. It’s largely a mystery, and doctors don’t have good answers as to why it happens. Parents of infants who have died of unexplained causes are often the center of suspicion, which can make them even more guilty and bereaved than they already are. SIDS medical research has, over the past few decades, focused on prevention: there is an association between the way infants are asleep and SIDS, so parents are encouraged to place babies on their backs and on surfaces farms.
But even with safe sleep campaigns, which have been effective in reducing infant mortality since the late 1980s, SIDS death rates have remained about the same in the United States for years. Without good explanations of the causes of death, parents of young children often spend months worrying that it will happen to their baby.
That’s probably why the new study has hit such a chord on social media. Her findings were also overstated by early coverage that claimed she showed the clear reason for SIDS. This is common with scientific studies, which are sometimes portrayed by press releases, their researchers, or superficial reporting as more sensationalized than they actually are. It’s a problem that can give people unrealistic expectations of solutions and undermine trust in science more generally.
Focus on this SIDS study published in the journal EBioMedicine last week shows it was 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 the researchers believe is involved in neural function. This does not necessarily mean that the enzyme is responsible for SIDS or plays a role in infant death. And even though there was a statistical difference between the levels of the enzyme between the two groups of infants, there was some overlap between them. That would make it difficult to design an accurate blood test to check whether an infant had levels of the SIDS-linked enzyme, Moon said.
I saw this report several times on my feed today, so I wanted to comment.
This is interesting (and promising) work, but the report (https://t.co/uhyRmmZc9e) GREATLY exaggerates the research findings.#SIDS this is awful, but we have to be careful with the posts here
— Jonathan Marron MD MPH (@JonMarronMD) May 12, 2022
Individual scientific studies rarely offer clear answers, especially to complex issues like SIDS. Science is an iterative process, and research builds on itself over time. Research into the more basic biological reasons for devastating problems like SIDS is important to help break down the stigma of grieving parents and offer potential solutions. And any new discovery that points in a promising direction is helpful. But it is also important to be clear about the limitations of any given research. In this case, there is still a long way to go before an SIDS test is available.
“This is progress, and for this we should be optimistic, but it is not the complete answer,” Alison Jacobson, CEO of First Candle, a SIDS-focused nonprofit, said in a statement. . “As bereaved parents ourselves, we understand how parents whose babies have died of this mysterious disease desperately want answers and new parents want reassurance that it will not happen to their baby. We pray that it will happen one day, but it is not today.