Using Sudden Unexpected Infant Death-Case Registry Data to Drive Prevention

In 2019, with funding from a CDC Cooperative Agreement, we established the SUID-CR for Cook County in close partnership with the Cook County Medical Examiner’s Office (CCMEO) and the Illinois child death review (CDR) teams for Cook County. The CDR teams are managed by the Illinois Department of Children and Family Services (DCFS).

The CCMEO serves as the single point of entry for all SUID in Cook County. Data including medical records, autopsy findings, and death scene investigation are housed in the LabLynx laboratory information management system at the CCMEO. Most SUID-CR data come from the LabLynx system. One key piece of information, SUID categorization, however, comes only after thorough discussion of each SUID in CDR. After the Cook County CDR team completes the discussion of all available details of each SUID, they use a CDC-designed algorithm⁷ to categorize the SUID by consensus as either explained (ie, suffocation because of soft bedding, wedging, overlay, and/or other) or unexplained (with or without unsafe sleep factors) (Fig 1).

Our data coordinator serves as the single extractor of data from these systems and enters the ∼250 variables for each SUID into the National Fatality Review-Case Reporting System, and our SUID-CR team provides quality assurance. A free text “narrative” field allows for details of the event often not captured in the individual variable fields. Once entered, all data elements are reviewed, cleaned, and finalized by the SUID-CR team. The data may then be downloaded by our biostatistician, analyzed by the SUID-CR team, and developed into annual reports.

CDC provides technical support in this process including quarterly feedback to the team on data completeness and quality, as well as feedback on the choices made regarding categorization of SUID (eg, suffocation, possible suffocation, unexplained unsafe sleep). As an additional quality check, we have recently acquired Illinois Vital Records data to compare SUID-CR counts by year to those counts based solely on Cook County resident death certificates with International Classification of Diseases, 10th Revision, codes of W75, R95, or R99.

The work of CCMEO medicolegal death investigators, DCFS investigators, and CDR teams to more fully understand the circumstances that led to each SUID is sobering. Families who have just lost their most precious infant almost always agree to participate in such investigations, which is undoubtedly painful. Participation in the SUID-CR brings all of this to light and serves as a foundation to how we approach prevention: with compassion, deep respect, and without judgment. Each of these deaths represents a family tragedy and the loss of a precious life.

In 2022, with funding from the American Academy of Pediatrics, we partnered with Family Focus, a longstanding and trusted community-based organization that serves pregnant and parenting families from Chicago’s west and south side communities to form Community Partnership Approaches to Safe Sleep (CPASS)–Chicago. The goals of CPASS were to reach those communities most impacted by SUID with education and safe sleep resources and to distribute 200 safe sleep kits that included a portable crib. Led by our prevention coordinator, who was the sole medicolegal infant death scene investigator for the CCMEO for the previous 9 years, CPASS Chicago uses Cook County SUID-CR data to understand which communities are most impacted by SUID, and are thus where outreach must occur. Our prevention coordinator leverages her social knowledge of community support agencies, family-focused community events, public school programs, senior living centers, faith-based networks, barbershops, hair and nail salons, and social media groups to reach out and share our SUID-CR data and ask for opportunities to present to families and those who support them. Individual outreach activities reach as few as 15 individuals to >1,000 individuals, depending on the forum. Each event presents networking opportunities, and new relationships are developed in a trusted, positive atmosphere. In 2023, CPASS Chicago expanded its partnerships to include 3 additional networks, a doula collective, a faith-based alliance, and a community health institute, serving pregnant and parenting families and supporting their communities.

Through a well-established clinic–community partnership network of home visiting and doula agencies that predated the SUID-CR, we are fortunate to have trusted relationships with these and other maternal–child health focused agencies in the community. Sharing our SUID-CR data with this network likewise leads to safe sleep conversation opportunities at resource fairs and events that promote healthy pregnancies and support families with infants and young children. Through our close affiliation with Family Connects Chicago, we likewise collaborate with the Chicago Department of Public Health (CDPH) to share these data with and learn from the city’s workforce of public health nurses that make postpartum home visits to Chicago families with newborns from participating birth hospitals as they navigate promoting safe sleep across the rich diversity of families they serve. Through both our relationship with Family Connects Chicago and our network of home visiting and doula programs serving SUID-impacted communities, we provide ready availability of outreach, information, resources, and networking to this system of care for pregnant and parenting families with infants.

Our annual reports detailing our SUID-CR data have been distributed during both CPASS outreach and to hundreds of stakeholders across health care, public health, human services, maternal–child health, community agencies, and SUID prevention advocates across Chicago and Cook County.

We have worked with CDPH to incorporate our SUID-CR data into their data platform, the Chicago Health Atlas.⁸ The Health Atlas provides public access to a suite of Chicago’s health indicators including trends, disparities, and intersections with the social and structural determinants of health.

We have worked with CDPH and the Illinois Department of Public Health to inform their statewide “Illinois Safe Sleep Support” campaign.⁹ Campaign messaging and accessibility were informed by SUID-CR data and the experience of CPASS Chicago in providing education and outreach in SUID-impacted communities.

Our first objective to establish a robust SUID surveillance system for Cook County has been achieved, and this has provided a detailed understanding of the complex circumstances surrounding Cook County SUID. We have produced a report for 2019 and another for 2020 to 2021.^10,11 Our analysis of SUID-CR data for 2019 to 2021 has revealed the patterns of these deaths in our county. A total of 148 Cook County infants died suddenly and unexpectedly during these 3 years, of which 141 (95%) were sleep-related. Of these sleep-related deaths, 32 (23%) were found to be because of suffocation/possible suffocation. A total of 114 (81%) of these deaths occurred among infants aged <6 months. Of the 141 sleep-related deaths, 57 (40%) were found in an unsafe position (on stomach or side); 120 (85%) died while in an unsafe location (predominantly adult beds [n = 95] and couches [n = 12]); and 93 (66%) died while sharing a sleep surface with another person. Non-Hispanic Black infants died at a rate (255 of 100 000 live births) 15 times and Hispanic infants died at a rate (50 of 100 000 live births) 3 times that of white infants (17 of 100 000 live births). SUID peaked in these data for infants between 30 and 60 days of life. Infants who were born preterm (<37 weeks’ gestation) were overrepresented among the SUID of Cook County. Although 10.4% of Cook County births were born preterm,¹² 35 (25%) of Cook County’s SUID had been born preterm. There were 25 (18%) infants who died with exposure to either maternal smoking during pregnancy or living in a home with a smoker. We found that 27 (19%) infants died while temporarily staying elsewhere (rather than in the infant’s usual home), and 24 (17%) families had a previous experience of intimate partner violence in the household. Mapping of SUID revealed a geographic clustering of SUID on the south and west sides of Cook County in communities with high hardship¹³ (Fig 2).

Our second objective of implementing prevention programming carefully designed using surveillance data to address the patterns of SUID has also been achieved. From 2022 to 2023, CPASS Chicago completed 323 touchpoints with safe sleep conversations, promotion, and resource provision, reaching an estimated 12 000 community members from Cook County’s communities most impacted by SUID (Fig 3).

Whether at in-person or virtual community events, a central part of the CPASS Chicago approach is sharing our short safe sleep video.¹⁴ This carefully crafted video features a mother who lost her infant to SUID, an experienced pediatrician, and our prevention coordinator, all African American. The content reflects on the local SUID disparities experienced in Cook County. After watching the video, a conversation starts as parents share their impressions:

At outreach events, we are able to provide portable cribs, gift bag giveaways with items like lotions, wipes, washcloths, and pacifiers, together with Illinois Safe Sleep Support educational cards. We give out packaged snacks labeled with a scan code for our safe sleep video. Sharing SUID-CR data directly with families at outreach events illuminates key messages about the risks of prone sleeping, bed-sharing, soft bedding, and hazardous infant sleep products. Getting SUID-CR data into the hands of families caring for infants deepens engagement and, as one of our community agency partners stated, “returns power to the people.”

We have completed 37 presentations of these data to stakeholders from home visiting and doula agencies, maternal–child health collectives, community health worker hubs, Chicago’s fetal and infant mortality review, academic centers including birthing and pediatric hospitals, federally qualified health center networks, at relevant conferences, public health convenings, and as requested webinars. Of note, we presented our data at the Illinois Perinatal Quality Collaborative statewide meeting, the focus of which this year is equity and safe sleep for infants. This audience consists of a statewide network of birthing hospitals that will participate in this initiative, and we have advised their working groups regarding approaches to modeling safe sleep and providing respectful safe sleep education in the postpartum setting.

The CCMEO has a policy to notify Illinois DCFS for every infant death they receive. This practice eliminates bias in reporting; however, bias may remain in whether DCFS intake personnel takes the death for investigation. Only a minority of SUID are not investigated by DCFS. We are sensitive to the painful reality endured by families who experience SUID to be then investigated for possible abuse or neglect. We have found, however, that DCFS investigation lends details to the circumstances of the SUID that may not have been uncovered during the CCMEO death scene investigation, especially if a family refuses the CCMEO death scene investigation or doll reenactment.

Challenges remain in SUID prevention and safe sleep promotion. Distributing necessary resources, including cribs and sleep sacks, requires funding and logistical coordination, such as adequate storage space, moving of heavy packages, and transport to families or agencies supporting families. As these processes become more fluid and thus more accessible, demand increases and securing funding to meet the increased demand resurfaces as a challenge. We have found that most Medicaid managed care organizations in Illinois provide an incentive program for pregnant people wherein, by attending a certain number of prenatal visits, a free crib, car seat, and other necessary items are then delivered to the participant’s home. Families at greatest risk of SUID, however, are also more likely to forego prenatal visits as they try to meet their other family and socioeconomic needs. Ultimately, this policy may constrain SUID prevention efforts through low deployment of these resources. We have started discussions with a highly used managed care organization to address this barrier.

Through this effort, we have learned 3 main lessons relevant to others involved in similar work. First, we learned that the connection to a national model of surveillance, in our case, CDC’s SUID-CR, is invaluable. Our surveillance and prevention have benefitted immeasurably from the technical assistance of CDC to create a system of detailed, high-quality, comprehensive, and timely information on the deaths we hoped to prevent. Second, we have learned that allowing time and conversation to reflect on SUID disparities experienced by our communities, as well as barriers to safe sleep, provides the opportunity for parents to share their hopes, fears, and the real circumstances of their lives, allowing them to lead the way in establishing a safe sleep environment for their infants. A third lesson is that strong partnerships are essential in such an effort. In our case, we have become close partners with CCMEO, CDR, CDPH, and multiple trusted community organizations with long histories of working in the areas most impacted by SUID. One key to these partnerships being successful is the involvement of our prevention coordinator who is from one of the high-risk areas and, with her decadelong experience investigating these deaths, is credible and passionate about this work. Being transparent, responsive, and accountable to our partners and each other deepens relationships and establishes our efforts as reliable and trustworthy.

Preventing SUID begins with a robust surveillance system that allows for deeper understanding of the frequency, distribution, disparities, and characteristics of SUID in our communities to inform prevention approaches. Our surveillance system has allowed tracking of SUID trends (objective 3) and has shown a gradual decline in the number and rates of SUID in Cook County over the past 2 years (Fig 4). Although this trend is in the direction of our goal, we must remain cautiously optimistic in its interpretation. To sustain this work, we applied for and are recipients of a second round of funding from CDC for the next 5 years. We have also secured funding to develop additional prevention efforts. We have begun providing birth hospitals with SUID information specific to the infants they discharge, which may motivate those hospitals to reexamine their SUID prevention practices, including modeling of safe sleep in the hospital and ensuring resources for families who do not have a safe place for their newborns to sleep when they get home. We have begun to create a query-able system for anyone to easily access our data in deidentified form. By making our data more accessible to others, researchers and others interested in prevention will have key information to join and advance this effort. Finally, we recently have begun applying the Injury Equity Matrix¹⁵ to systematically examine the interplay of the built environment, social environment, equipment and safety products, education, investigation, and belief system surrounding each SUID, including historical factors, modifiable factors, and intersectional identities. This has yielded further insights which enable an expansive approach to SUID prevention.

We thank the Cook County families who lost their treasured infants. Without their participation in the multiple investigations into the cause of their infants’ deaths, we would not have the ability to know more fully the circumstances of their deaths in order to better understand how to prevent them. We also thank CPASS Chicago partners Family Focus, Chicago Birthworks Collective, Proviso Township Ministerial Alliance Network, and Sinai Community Institute, all of whom bring intentionality and purpose to the work before us. Finally, we thank the rest of the Cook County SUID Case Registry and Prevention team: Christie Lawrence, DNP, RNC-NIC, APN/CNS (birth hospital outreach coordinator, Rush University College of Nursing); Meredith Reynolds, MD (pediatric and forensic pathologist at CCMEO); and Sumihiro Suzuki, PhD (biostatistician, Rush University Medical Center) for their instrumental work in data coordination, quality, analysis, review, and dissemination, and for their critical review of this manuscript.

CCMEO

Cook County Medical Examiner’s Office

CDC

Centers for Disease Control and Prevention

CDPH

Chicago Department of Public Health

CDR

child death review

CPASS

Community Partnership Approaches to Safe Sleep

DCFS

Department of Children and Family Services

SUID

sudden unexpected infant death

SUID-CR

SUID Case Registry