Safe sleep practices are a matter of life and death for infants. In Cook County, on average, there is one sudden unexpected infant death a week.
“People don't hear about these deaths, and so they think they must be very rare,” said RUSH pediatrician Gina Lowell MD, MPH, who leads the Sudden Unexpected Infant Death Case Registry for Cook County. The CDC-funded case registry is housed at RUSH and created in close affiliation with the Cook County Medical Examiner’s Office.
“We want families and caregivers and health care providers, everyone, to know what we have learned from the SUID case registry,” she added. “Who is caring for an infant goes beyond their parents or grandparents. It’s everybody, even siblings, extended family, babysitters and childcare providers.”
Since 2019, each sudden unexpected infant death has been studied by the RUSH Cook County SUID case registry and recorded in the National Center for Fatality Review and Prevention’s Case Reporting System. These entries detail the circumstances of each death, including the infant’s sleep environment.
The local registry is included in the CDC’s SUID Case Registry, which gathers data from different parts of the country in an effort to improve the quality and consistency of data, monitor SUID rates and advance understanding of factors that may affect these types of deaths. The CDC published a report on its most recent findings on SUID earlier this year.
From 2020 through 2021, 99 infants died suddenly and unexpectedly in Cook County, according to the second annual Sudden Unexpected Infant Death Case Registry for Cook County. The frequency is similar to that reported in 2019. Nearly every death involved one or more sleep hazards, Lowell said.
The registry notes such details as when and where the death took place, in what situation and with whom, such as in an adult bed with other sleepers, or in a sleep environment with blankets or other soft items. The information is derived from the Cook County Medical Examiner's Office death scene investigations, case records and autopsies, Department of Children and Family Services investigations and SUID categorization determined using CDC criteria. According to the 2020-2021 report, of the 99 deaths, 96 occurred during sleep. Among the sleep-related deaths:
- 99% of infants were found in an unsafe sleep environment.
- 22% were found on their stomach.
- 74% were sleeping with another person.
- 89% were found in places not approved for safe sleep, most commonly in an adult bed.
- 91% were sleeping with soft bedding.
- 25% were found to have suffocated in their sleep environment
- Race and ethnic disparities persist among these deaths. The rate of sleep-related deaths among Black infants was more than 14 times higher than that of white infants, and 2.5 times higher among Hispanic infants compared to white infants.
- Prematurity compounded the risk for infants: 27% of the SUIDs occurred among infants who were born prematurely. Prematurity increased risk for Black infants such that 1 in 182 preterm Black infants died of SUID.
“There is such a striking disparity for Black and Hispanic infants,” Lowell said. “Such disparities are driven by inequitable access to resources that support health and safety for families.”
What is a safe sleep situation for infants?
An infant sleeping safely is defined as sleeping on their back, in their own crib or bassinet, with nothing in the crib or bassinet with them.
While placing infants on their back to sleep has been the cornerstone of preventing sudden infant deaths since 1994, other hazards in an infant’s sleep environment have come to be better understood in recent years. These additional hazards include sleeping with another person, sleeping with soft bedding and sleeping on a surface that is not a safety-approved mattress.
“We get the reports from the medical examiner's office for every single one of these deaths as they come in, and the reality is just so painful,” said Kyran Quinlan MD, MPH, the former principal investigator for the SUID case registry at RUSH and now the pediatric medical adviser to the director of the Illinois Department of Public Health.
Before joining the case registry project as prevention coordinator, Felicia Clark was the infant death scene investigator for the Cook County Medical Examiner’s Office. In that role, she saw the pain families endure when an infant dies.
“Talking about suffocation and sleep-related infant deaths is not easy,” Clark said. “But talking about it — without judgment and with compassion — can help us better understand the circumstances families face in those first several months of new life.” To raise awareness and connect families with necessary resources, the registry team partners with community-based organizations that support families, and with health care providers, home visiting agencies, and other places where everyone involved in an infant’s care can be found.
“We must continue to raise awareness of these tragedies and promote safe infant sleep practices to help prevent them,” Lowell said. “Even many health care providers are surprised when they hear that an infant dies nearly every week in Cook County, and that there’s really nothing else that takes babies’ lives as much as this.”
