Sudden Infant Death Syndrome or SIDS is a devastating condition that is still very poorly understood, so when new research comes out, it can feel like a big deal – especially if it seems to offer a way to save children’s lives. Social media posts cheered such a new study this week, predicting the study as identifying the cause of hundreds of babies dying unexpectedly each year.
But while the study points in a promising direction for future research, it is not a panacea, experts say. “There’s nothing definite about that,” said Rachel Moon, a researcher studying Sudden Infant Death Syndrome at the University of Virginia, in an email to The Verge. The rise in interest in the study is understandable, she said, but not justified.
SIDS refers to the sudden and often unexplained death of a baby one year of age or younger. This is largely a mystery and doctors do not have good answers as to why it is happening. Parents of babies who die for unexplained reasons are often at the center of suspicion, which can make parents feel even more guilty and sad than they already are. For the past few decades, SIDS medical research has focused on prevention: there is a link between the way babies are put to sleep and SIDS, so parents are encouraged to put babies on their backs and on hard surfaces.
But even with safe sleep campaigns that have been effective in reducing infant death since the late 1980s, the SIDS death rate has remained roughly the same in the United States for years. Without good explanations for why deaths occur, parents of young children often spend months fearing that this could happen to their baby.
This is a problem that can give people unrealistic expectations for solutions and undermine confidence in science as a whole.
This is probably why the new study has been covered so much on social media. His findings were also exaggerated by the early coverage, which he claims shows the clear cause of SIDS. This is common in research, which is sometimes presented by press releases, their researchers or surface reports as more sensational than they actually are. This is a problem that can give people unrealistic expectations for solutions and undermine confidence in science as a whole.
A close look at this study of SIDS, published in the journal EBioMedicine last week, shows that it is very small – it includes blood samples from 67 dead babies and 10 survivors. The analysis showed that infants who died of SIDS had lower levels of an enzyme called butyrylcholinesterase, which researchers say is involved in nerve function. This does not necessarily mean that the enzyme is responsible for SIDS or has a role in the death of the baby. And although there was a statistical difference between the enzyme levels between the two groups of babies, there was an overlap between them. That would make it difficult to develop an accurate blood test to check if the baby has SIDS-related enzyme levels, Moon said.
I have seen this report several times on my show today, so I wanted to comment.
This is an interesting (and promising) job, but the report greatly exaggerates the results of the study. #SIDS is terrible, but we must be careful with the messages here
Briefly 1 / x https://t.co/uVx7sExjrp
– Jonathan Marron MD MPH (@JonMarronMD) May 12, 2022
Individual research rarely offers clear answers, especially to complex questions such as SIDS. Science is an iterative process and research is upgraded over time. Research on the more fundamental, biological causes of devastating problems such as SIDS is important to help remove the stigma of grieving parents and to help offer potential solutions. And any new discovery that points in a promising direction is useful. But it is also important to be aware of the limits of a study. In this case, there is still a long way to go before a SIDS screening test is available.
“This is progress and we should be optimistic about it, but that is not the whole answer,” said Alison Jacobson, CEO of First Candle, a non-profit organization focused on SIDS. “Like grieving parents themselves, we understand how parents whose babies have died from this mysterious disease are desperate for answers, and new parents want assurances that this will not happen to their baby. We pray that one day this will happen, but not today. “
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