An empty crib stands in a Caledonia condominium. The Michigan Department of Health and Human Services, and national organizations, recommend babies sleep on their backs in cribs with firm mattresses fitted with only a sheet and absent any bumpers, blankets or pillows. This helps prevent Sudden Infant Death Syndrome.

The hardest part is the moment they know, after every effort has failed, and then failed again, that the parents must be told.

There is nothing more to do.

“It’s like you just want to prolong it for another moment so you don’t have to see their faces to tell them. And it’s hard,” said Sarah Rauner, chief pediatric nurse practitioner at Beaumont Hospital Troy.

“They’re distraught. They’re holding on to any shred of hope that something is going to kick in and something’s going to happen.”

Rauner has worked in the emergency department for 21 years. She has seen babies, usually brought by ambulance after a 911 call, die of what was believed to be sudden infant death syndrome, the unexplained death, usually during sleep, of a seemingly healthy baby younger than 1. It is a diagnosis of exclusion, meaning professionals have ruled out all possible causes.

None of them, she said, are “ever, ever easy.”

Such a death is rare – Michigan reported 43 in 2020, the most recent year for which data is available. In the United States, there were 1,250 deaths due to SIDS in 2019.

More children – 137 in 2020 – die under the broader category of sudden unexpected infant death, the cause of which is not initially apparent but later is narrowed to SIDS, unknown or accidental suffocation and strangulation in bed. Sixty-nine Michigan children died in 2020 of accidental suffocation and strangulation in bed.

SIDS has gotten recent attention because of a widely shared study out of Australia published last month by eBioMedicine, a journal of The Lancet.

It found activity of an enzyme, butyrylcholinesterase, was lower in babies who died of SIDS compared to surviving controls and other non-SIDS deaths. It is the first study to identify a biochemical marker in SIDS infants prior to their death, reads the study, which looked at 722 dried blood spots collected two to four days after birth from 2016 to 2020, including from 26 SIDS and 41 non-SIDS deaths and 655 controls matched by gender and date of birth.

“Thus, the finding presents the possibility of identifying infants at future risk for SIDS and it provides a specific avenue for future research into interventions prior to death,” according to the study.

One subsequent article circulated on social media was headlined “Researchers pinpoint reason infants die from SIDS.”

Health professionals would not draw the same conclusion. They note the sample size was small and question its application.

If it was possible to incorporate such testing into newborn screening practices, it could give parents a false sense of security or insecurity, said Dr. Jordan Kridler, a Henry Ford Health pediatrician in Royal Oak.

Rauner said she does not believe every baby who dies of SIDS will have this low enzyme. She sees it as one finding that might lead to other findings, which might help doctors identify babies at potential risk.

“Of course, I want this to be the one that does it. But I don’t necessarily think that it’s going to be the only one. I think it could potentially be one marker,” Rauner said.

Maybe it could be used as a screening tool. “But I still don’t know what we would do with it,” Rauner said.

Research in this area always is good, because it helps authorities learn more, and the more is known, the more prevention is possible, said Colleen Nelson, infant safe sleep Program coordinator for the Michigan Department of Health and Human Services. “But I think it’s really early stages.”

Already, she said, there is information to suggest some babies, such as those born preterm and with low birth weight or children of smoking mothers, are at higher risk. This research could contribute to the list, she said.

It is an issue that incites passion and emotion, Rauner said.

“Parents are terrified of SIDS, especially if they’ve ever had it in their life,” she said. “Because there is no chemo treatment that leads up to it. There’s no trauma that they go through. There isn’t anything that is any kind of warning sign.”

There is a strong desire to find a cause, a fix or a simple marker, she said.

Rauner uses any question about the study as a teaching opportunity.

SIDS is more likely in males and most often seen in babies 2 to 4 months.

Babies born to mothers younger than 20, people who receive little to no prenatal care also are at higher risk, experts said.

Health authorities most emphasize the importance of safe sleep practices.

With safe sleeping campaigns, which began in the mid-1990s and encouraged parents to place infants on their backs, came a dramatic reduction in the prevalence of SIDS. In 1992, there were 243 deaths in Michigan. By 1999, the number dropped to 114. In 2012, it hit a low of 15 and the number annually has been below 50 since 2006, according to Michigan data.

Contributing also was a shift in classification of SIDS deaths. Officials do a better job of investigating, Nelson said. More deaths are now deemed accidental suffocation or strangulation in bed; the number of these deaths has risen since the 1990s in Michigan.

Parents should place babies on their backs for every sleep period by every caregiver until they are 1.

“The prone or side sleep position can increase the risk of rebreathing expired gases, resulting in hypercapnia (a buildup of carbon dioxide) and hypoxia (low blood oxygen),” according to the American Academy of Pediatrics.

Kridler said the signal in babies’ brains that regulates their breathing isn’t fully developed in infants. That carbon dioxide accumulation can be “very dangerous.”

Once babies can roll, they can remain in the position they assume, experts say.

Recently, officials have stressed not only back positioning, but safe sleeping environments. Health advocates discourage blankets and bumpers. Babies should sleep alone with only a fitted sheet on a firm mattress in a crib, bassinet or pack ‘n play.

A new federal law, the Safe Sleep for Babies Act, signed by President Joe Biden last month, makes it illegal to sell padded bumper pads and inclined sleepers for infants.

Babies should not overheat. “We don’t want seven layers on the baby because we’re worried they’re going to be cold,” Rauner said. It is OK if they wake with cold fingers or toes.

Their blood does not circulate as well as adult’s. It is better to gauge by feeling the backs of their necks, Nelson said. “If they’re cold, they will cry and wake up.”

Room sharing is a good option – the academy of pediatrics recommends it until babies are at least 6 months old or ideally until 1 year – but bed sharing is discouraged.

Recognizing the early exhaustion of parenthood, Nelson said parents should come up with a plan, such as setting a phone alarm or stripping a bed of blankets and pillows before lying with or feeding a baby, while tired.

Breastfeeding also is associated with reduced risk of SIDS. According to the academy, studies show breastfed infants are more easily aroused from sleep than formula-fed babies and breastfeeding results in decreased incidence of diarrhea, respiratory infections and other infectious diseases associated with increased vulnerability to SIDS.

Rauner, however, was quick to note the pressure women are feeling to breastfeed, as parents nation-wide have dealt for months with a formula shortage. There are many reasons women don’t or cannot breastfeed. “We do promote breastfeeding, however, we need a fed baby.”

She sees SIDS as “multifactorial.” There is no one thing – or many things – that will most certainly prevent it.

“Everything kind of has to happen at the same time,” she said.

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