Ismael M. Belkoura — Medill News Service , 2025-04-30 22:43:00
WASHINGTON — The Trump administration has cancelled federal participation in Safe to Sleep, a 30-year campaign to prevent babies from dying in their sleep, STAT and the Medill News Service have learned.
The elimination of the National Institutes of Health’s role in the program, which helped slash infant deaths in the 2000s, comes at a time when sleep-related deaths among infants have increased. Sudden infant death rates were up nearly 12% between 2020 and 2022, according to the most recent data in a study published in JAMA Pediatrics.
“The elimination of this department is absolutely devastating as the rates of sudden unexpected infant death have begun to climb once again,” Alison Jacobson, the CEO of First Candle, a nonprofit organization that worked with the federal government on Safe to Sleep, said in an email.
Jacobson and Christina Stile, the former deputy director of the Office of Communications for the Eunice Kennedy Shriver National Institute of Child Health and Human Development, told STAT and Medill News Service that the communications office, which ran Safe to Sleep for the agency, was eliminated on April 1. Stile and the rest of the communications office were placed on administrative leave on that date.
“Because our office led the institute’s activities related to the Safe to Sleep campaign, this action effectively ended NICHD involvement in and support for the campaign,“ Stile said in a text message.
Diana W. Bianchi, the former director of the NICHD, was one of the five institute directors who were placed on administrative leave in April. Alison Cernich, the agency’s acting director, directed questions to the main NIH press office when asked for confirmation.
The press office did not respond to requests for comment made on Tuesday and Wednesday. However, in a letter dated last week, Cernich wrote that the “NICHD has long been committed to ensuring the wellness and safety of infants, including the use of safe sleep environments.”
As the NIH “undergoes structural changes,” Cernich added, the organization’s “leadership is actively reviewing how best to support the continuation of critical programs and meaningful engagement and transparency with the public.” The letter was obtained by STAT and Medill News Service from a participant in Safe to Sleep, who requested anonymity.
NICHD’s role within the campaign was to distribute materials about safe sleep practices to individuals, organizations, and medical professionals, Stile said in an interview. Using recommendations from the American Academy of Pediatrics, the NICHD shared advice and assets through several avenues, such as pamphlets for doctors offices and social media posts.
“We were the coordinators,” Stile said.
She noted that the work done by nonprofit partner organizations is incredibly important and valuable. However, she said the NICHD’s role will be difficult to fill.
“We produced all of these materials, tons and tons of content for other groups to use, that’s going to be all gone,” Stile said. “There’s no way that any of the organizations that we collaborated with can fill that role.”
First Candle, which provides education on sleep-related infant deaths and support to grieving families, has participated in the Safe to Sleep campaign since its inception.
Jacobson said First Candle and other organizations planned to continue the Safe to Sleep campaign without the federal government’s leadership.
“Needless to say, we are a nonprofit organization and don’t have a budget like the NICHD did, so hopefully many organizations that share our goal of educating families and caregivers on safe sleep will also be working to get the message out,” Jacobson said.
The federal government started the Safe to Sleep campaign in 1994 alongside other private organizations. Then called Back to Sleep, the campaign first focused on bringing awareness to SIDS, or sudden infant death syndrome, a type of infant death whose cause is undetermined.
With increased awareness and access to education, including encouraging parents to have infants sleep on their backs to decrease the chance of SIDS, deaths dropped dramatically. In 2009, there were 2,226 SIDS cases, compared with 4,073 cases reported in 1994.
In response to increases in non-SIDS accidental suffocation, strangulation, and entrapment, the NICHD expanded the campaign in 2012, renaming it Safe to Sleep. Under the new vision, the agency and partner organizations brought awareness to a broader umbrella of unexpected infant deaths, often called SUID.
These deaths are often caused by an unsafe sleeping environment where an infant could potentially die, including sharing beds with parents or sleeping in cribs that are not safety-approved by the Consumer Product Safety Commission. Broadening the campaign’s focus allowed the agency to promote general safe sleeping practices for infants.
Despite these efforts, sleep-related infant deaths have increased in recent years. Alongside the 12% increase in SUID cases from 2020 to 2022, accidental suffocation and strangulation in bed, a type of infant death within SUID, has increased since 1995, according to the Centers for Disease Control and Prevention.
