More babies are dying of SIDS. But the campaign to educate parents is in jeopardy.
More babies are dying of SIDS. But the campaign to educate parents is in jeopardy.
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Protesters against planned National Institutes of Health funding cuts
The Trump administration's push to slash funding at the National Institutes of Health has been temporarily blocked by a federal judge.
Katie Stern has lived through every parent's worst nightmare.
On Aug. 24, 2016, she put her newborn son Toby down for an afternoon nap – a nap he never woke up from.
Toby was 12 weeks and 5 days old. Doctors told Stern and her husband, Daniel, that their son had died from sudden infant death syndrome, or SIDS.
'We weren't brand new parents or first-time parents but to hear it was SIDS is something that shocked us, because it was just something that wasn't talked about with us at all,' said Stern, 42, from Monroeville, Pennsylvania, located outside of Pittsburgh.
She honored her son by establishing The Little Fox Toby's Foundation in 2017, a nonprofit focused on grief support, education and awareness related to pregnancy and infant loss.
After eight years of advocacy, Stern was shocked to learn that a successful public health campaign dedicated to spreading SIDS awareness and prevention may face government cuts.
The Safe to Sleep campaign, spearheaded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development, provides materials and messaging around evidence-based, safe sleep recommendations. The agency's participation in the program, which began in 1994 as the Back to Sleep campaign, was cut on April 1, according to Dr. Rachel Moon, a lead author of safe sleep guidelines from the American Academy of Pediatrics.
But in a statement sent to USA TODAY, the National Institutes of Health said no final decision has been made regarding the future of the Safe to Sleep campaign. While some material is still available on the website, others are 'temporarily unavailable to order.'
Families still need this information, said said Dr. Fern Hauck, a family medicine physician and professor of family medicine and public health sciences at the University of Virginia
Studies show that 96% of SIDS cases in the U.S. are associated with at least one risk factor, while 78% were associated with two or more. Some risk factors for babies include sleeping on their side or stomach, sharing a bed with a parent or caregiver, using soft bedding or bumper pads and sleeping on an incline.
'That is why this campaign is still so important,' said Hauck, who helped create the AAP guidelines. 'There are still people out there not following the guidelines.'
What causes SIDS? Study suggests genetics may be at play in sudden infant death syndrome.
The Safe to Sleep campaign's uncertain future comes as cases of sudden unexpected infant death, or SUID, rise for the first time in decades, Hauck said.
SIDS is the unexplained death of a seemingly healthy baby less than 1 year old, according to the Mayo Clinic. Death typically occurs during sleep and is sometimes known as crib death.
Boston Children's Hospital says SIDS is part of a larger category of unexpected infant deaths called sudden unexpected infant death, or SUID, which includes babies whose deaths are later explained.
The rate of sleep-related infant deaths increased almost 12% from 2020 to 2022, according to a January study published in JAMA Pediatrics. The Centers for Disease Control and Prevention reports that about 3,700 babies died from SUID in 2022.
Study authors from Virginia Commonwealth University said the uptick could be partly explained by the rise of COVID-19 and other respiratory viruses, parental opioid use and misinformation on infant sleep practices spread on social media.
'This decision to take down the communications office, which harbors the Safe to Sleep campaign, is devastating,' said Hauck.
The NIH's role as a leader in the Safe to Sleep campaign can't be understated, she said. The agency creates and provides free material to national institutions, healthcare providers and community organizations. It also translates the material into different languages and culturally appropriate formats, and makes updates based on the latest research and guidelines.
In addition to the loss of leadership, Stern said cutting NIH's ties to the Safe to Sleep campaign sends a disconcerting message to families who have experienced infant loss.
'I felt like it was a personal message to us that Toby's death didn't matter,' she said. 'It's heartbreaking.'
Adrianna Rodriguez can be reached at adrodriguez@usatoday.com.
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