SIDS Awareness Campaign Faces Potential Cuts Amidst Rising Infant Mortality Rates
Katie Stern, a mother who tragically lost her 12-week-old son Toby to Sudden Infant Death Syndrome (SIDS) in 2016, is now grappling with a new source of heartbreak: the potential dismantling of a crucial public health campaign dedicated to preventing SIDS. This campaign, known as "Safe to Sleep," has been instrumental in educating parents and caregivers about safe sleep practices for infants, and its possible demise comes at a time when cases of sudden unexpected infant death (SUID) are on the rise.
Stern’s personal tragedy fueled her passion for advocacy. In 2017, she established The Little Fox Toby’s Foundation, a nonprofit organization focused on providing grief support, education, and awareness related to pregnancy and infant loss. Her unwavering commitment to preventing other families from experiencing the same pain she endured makes the potential cuts to the Safe to Sleep campaign all the more devastating.
The Safe to Sleep campaign, originally launched as the "Back to Sleep" campaign in 1994, is spearheaded by the Eunice Kennedy Shriver National Institute of Child Health and Human Development. It provides a wealth of resources and clear messaging based on evidence-based, safe sleep recommendations. These recommendations, developed in collaboration with organizations like the American Academy of Pediatrics (AAP), have been credited with significantly reducing SIDS rates in the past.
However, recent developments have cast a shadow over the campaign’s future. According to Dr. Rachel Moon, a lead author of the AAP safe sleep guidelines, the National Institute of Child Health and Human Development’s participation in the Safe to Sleep program was cut on April 1. While some materials remain accessible on the campaign’s website, others are "temporarily unavailable to order," raising concerns about the long-term viability of the initiative.
The National Institutes of Health (NIH) issued a statement to USA TODAY, clarifying that no final decision has been made regarding the future of the Safe to Sleep campaign. However, the uncertainty surrounding the program’s funding and operation has sparked alarm among healthcare professionals and advocacy groups.
Dr. Fern Hauck, a family medicine physician and professor of family medicine and public health sciences at the University of Virginia, emphasized the continued importance of the Safe to Sleep campaign. Studies have shown that a staggering 96% of SIDS cases in the U.S. are associated with at least one risk factor, while 78% are linked to two or more. These risk factors include infants 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 played a key role in creating the AAP guidelines. "There are still people out there not following the guidelines."
The potential cuts to the Safe to Sleep campaign are particularly concerning given the recent rise in cases of sudden unexpected infant death (SUID). SIDS, a subset of SUID, is defined as the unexplained death of a seemingly healthy baby less than 1 year old. These deaths typically occur during sleep, leading to the term "crib death." SUID encompasses all unexpected infant deaths, including those with a later explanation.
A January study published in JAMA Pediatrics revealed that the rate of sleep-related infant deaths increased by almost 12% from 2020 to 2022. The Centers for Disease Control and Prevention (CDC) reported that approximately 3,700 babies died from SUID in 2022. Researchers from Virginia Commonwealth University suggest that this alarming trend may be partly attributed to factors such as the rise of COVID-19 and other respiratory viruses, parental opioid use, and the spread of misinformation on infant sleep practices through social media.
"This decision to take down the communications office, which harbors the Safe to Sleep campaign, is devastating," said Hauck, highlighting the crucial role the NIH plays in disseminating accurate and up-to-date information on safe sleep practices.
The NIH’s contributions to the Safe to Sleep campaign extend beyond simply providing information. The agency creates and distributes free materials to national institutions, healthcare providers, and community organizations. It also ensures that these materials are translated into different languages and adapted to various cultural contexts, making them accessible to a diverse population. Furthermore, the NIH continuously updates the campaign’s messaging based on the latest research and guidelines, ensuring that parents and caregivers receive the most accurate and effective advice.
For Katie Stern, the potential dismantling of the Safe to Sleep campaign feels like a personal affront. "I felt like it was a personal message to us that Toby’s death didn’t matter," she said. "It’s heartbreaking." Her sentiment reflects the deep sense of loss and frustration felt by many families who have been touched by SIDS.
The uncertain future of the Safe to Sleep campaign underscores the need for continued investment in research, education, and awareness initiatives aimed at preventing infant deaths. While the reasons behind the potential cuts remain unclear, the potential consequences for infant health are undeniable. The campaign’s success in reducing SIDS rates in the past serves as a testament to its effectiveness, and its continued existence is crucial for protecting the lives of vulnerable infants and providing support to grieving families.
