Sudden infant death syndrome, or sudden infant death syndrome, is a devastating condition that is still very poorly understood, so when new research comes out it could be a really big deal, especially if that research appears to offer a way to save children’s lives . Social media posts this week applauded such a new study, heralding the study as the reason 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 at all,” Rachel Moon, a researcher who studies SIDS at the University of Virginia, said in an email to The edge† The surge of interest surrounding the study is understandable, she said, but is unwarranted.
Sudden Infant Death Syndrome refers to the sudden and often unexplained death of a baby one year old or younger. It’s largely a mystery, and doctors don’t have good answers as to why it happens. Parents of babies who die from unexplained causes are often the center of suspicion, which can leave the parents feeling even more guilty and sad than they already do. Medical research into SIDS has focused on prevention in recent decades: there is a link between how babies are put to sleep and SIDS, so parents are encouraged to place babies on their backs and on a firm surface.
But even with safe sleep campaigns that have been effective in reducing infant mortality since the late 1980s, SIDS death rates in the United States have remained roughly the same for years. Without good explanations for why the deaths occur, parents of young children often fear for months that it could happen to their child.
That’s probably why the new study struck such a chord on social media. The findings were also overhyped by early coverage that claimed it showed the obvious reason for SIDS. This is common in scientific studies, which are sometimes presented by press releases, their researchers or superficial reporting as more sensational than they really are. It is a problem that can give people unrealistic expectations of solutions and undermine confidence in science in general.
Taking a closer look at this SIDS study, published in the journal EBioMedicine last week it turns out it was very small – it included blood samples from 67 babies 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 neural function. That doesn’t necessarily mean the enzyme is responsible for SIDS or plays a role in a baby’s death. And while there was a statistical difference between the levels of the enzyme between the two groups of infants, there was overlap between them. That would make it difficult to design an accurate blood test to check whether a baby had levels of the enzyme linked to SIDS, Moon said.
I’ve seen this report multiple times in 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 results.#SIDS is terrible, but we have to be careful with messages here
— Jonathan Marron MD MPH (@JonMarronMD) May 12, 2022
Individual scientific studies rarely provide clear answers, especially to complex problems such as SIDS. Science is an iterative process and research builds on itself over time. Researching the more fundamental, biological reasons for devastating problems such as SIDS is important to help remove stigma from grieving parents and provide possible solutions. And any new finding that points in a promising direction is helpful. But it is also important to be clear about the limits of a particular study. In this case, there is still a long way to go before a SIDS screening test may be available.
“This is progress, and for that we have to be optimistic, but it’s not the whole answer,” Alison Jacobson, CEO of the SIDS-focused nonprofit First Candle, said in a statement. “As bereaved families, we understand how parents whose babies have died from this mysterious illness desperately want answers and new parents want the assurance that this will not happen to their baby. We pray that one day that will happen, but that is not the case today.”