Collaboration to Reduce Sudden Unexpected Infant Death With Child Fatality Review and Outreach

The CDR is a systematic, multiagency, and multidisciplinary review of unexpected child deaths (cite – introductory article). CFRTs for local jurisdictions were established by law in Maryland in 1999. The CFRT coordinator in each health department receives notice from the Office of the Chief Medical Examiner of unexpected deaths within their county or city and is required to review the cases. Data from all CDR reports are entered into the National Center for Fatality Review-Case Reporting System. Additionally, each SUID is categorized utilizing the Centers for Disease Control and Prevention’s SUID algorithm for cause analysis purposes.⁵ 

BHB is a public health initiative with the vision that all of Baltimore’s children are born healthy and grow and thrive in healthy families. In 2009, Baltimore City had one of the worst infant mortality rates in the country at 13.5 deaths per 1000 live births.⁶ The highest infant mortality rates were concentrated in racially segregated neighborhoods with high rates of poverty and violence.⁶ Black babies were 5 times more likely to die than white babies.⁶ The high rates and racial inequities spurred a call to action for leaders from the government, nonprofit, healthcare, and academic sectors. Led by the Baltimore City Health Department, BHB was created. The Family League of Baltimore and HealthCare Access Maryland served as lead implementation partners with BHB, galvanizing over 150 partners with expanded goals to: (1) improve policies and services that support mothers, babies, and families from preconception to age 3; (2) mobilize community residents; and (3) conduct social marketing to promote better health.

BHB uses the CFRT as a key tool for identifying, monitoring, and evaluating the initiative. For example, based on an analysis of Baltimore City’s CFRT and vital statistic data, BHB learned that sleep-related deaths are the second leading cause of death for Baltimore babies, and the leading cause of death for babies after hospital discharge. With this information, BHB developed and shared an infant sleep death profile, which identified factors contributing to sleep-related infant deaths. The profile highlighted that over 80% of infant sleep fatalities occurred in babies who were placed to sleep outside of a safe crib and more than 60% of deaths occurred in babies sleeping with other family members. The profile also included data on prenatal smoking and secondhand smoke exposures, which were confirmed in over half of the sleep-related infant deaths. Housing instability was also found to significantly contribute to families’ difficulty providing a safe sleep environment for their infants.⁷ 

Although geographically adjacent to each other, Baltimore City and Baltimore County do not share any governmental functions and work independently. Before this collaboration, there were no formal mechanisms for direct communication or coordination of efforts. To overcome the challenge of reaching families who cross jurisdictional lines and avoiding duplication of services, the 2 CFRTs worked to streamline communication and align priorities.

In 2010, after Baltimore City started notifying birth hospitals of sleep-related infant deaths, the County CFRT began coordinating efforts recognizing the overlap of infants in where infants reside. Since then, Baltimore County and Baltimore City have partnered to implement a cross-jurisdictional notice targeting providers, community members, parents, and caregivers utilizing social media, health officer notices, and media events to bring attention to sleep-related infant deaths. Messaging highlighted the importance of ensuring safe sleep practices for all infants and the need to raise awareness among all potential caregivers.

Jurisdictional collaboration, multidisciplinary stakeholder input, and dissemination campaigns facilitated the creation of effective educational campaigns. Using CRFT data, BHB conducted focus groups and interviews with City residents and clinicians to better understand knowledge, attitudes, and behaviors around infant sleep. Qualitative findings from this formative work served as the basis for the 2010 launch of the City’s SLEEP SAFE public education campaign with messages and images showing how all babies should sleep alone on their backs, and in cribs, and in a smoke free environment.⁸ With support from the local government agencies and funders, the City rallied around promoting safe infant sleep. A SLEEP SAFE video, developed in conjunction with the Johns Hopkins Center for Communication Programs, featured emotional testimonials from mothers who had experienced SUID.⁹ In addition to caregiver stories, community members and health department staff delivered safe sleep education and information regarding available local resources. The SLEEP SAFE video was shown in every Baltimore City birthing hospital, Department of Social Services waiting room, Women, Infants and Children waiting rooms, central booking and intake center, and routinely aired at jury duty sites. Similar videos featuring fathers and other caretakers (grandparents, foster parents), and Spanish-language speaking caregivers were subsequently created and disseminated widely. Posters, billboards, bus and metro ads with similar messaging were placed around the city. Marketing efforts were coupled with a policy requiring all parents to sign a document affirming they viewed the video before discharge from all Baltimore City and Baltimore County birth hospitals.

Concurrently, Baltimore County developed similar field-tested safe sleep messaging. Since 2010, Baltimore County and Baltimore City have partnered to implement a cross-jurisdictional notice targeting clinical providers, community members, parents and caregivers utilizing social media, health officer notices, and media events to bring attention to sleep-related infant deaths. Messaging highlighted the importance of ensuring safe sleep practices for all infants and the need to raise awareness among all potential caregivers.

In 2013, BHB launched its first in a series of Safe Sleep Summits with national expert speakers and leaders that have successfully implemented safe sleep education protocols to share insights and strategies with staff from all birthing hospitals in the region. This initiative was developed in response to findings from a home visiting evaluation of Baltimore’s SLEEP SAFE campaign that demonstrated families who viewed the SLEEP SAFE video and received safe sleep education from providers placed their babies in a safer environment (unpublished program evaluation data). The evaluation also found the postpartum hospital stay was a critical time for new parents to learn and absorb modeled behavior in caring for an infant. Hospitals that actively embraced their roles in educating on safe sleep demonstrated a reduction of sleep-related infant deaths.¹⁰ CFRT staff from BHB and the County hosted the summits using a collaborative approach and invited hospital staff from obstetrics, labor and delivery, the NICU, well baby, and pediatric units in all neighboring birthing hospitals. Sponsors included the local health department, the Mayor’s Office, Maryland Department of Health, Maryland Chapters of the American College of Obstetrics and Gynecologists and the American Academy of Pediatrics, the Governor’s Office, and the Maryland Hospital Association. Each summit began with a national perspective on sleep-related infant death and any new research findings or evidence-based recommendations. Representatives from all regional birthing hospitals attended and reviewed local deidentified data from each of the birthing hospitals. Panelists were then invited to share updates on successes and challenges. In breakout sessions attendees from each of the birthing hospitals worked together to develop an action plan and to identify at least 1 institutional infant safe sleep champion. Each working group handed in their action plan that was then followed up on by the local health department periodically throughout the year.

County efforts have been supported in kind from the Baltimore County Department of Health and Human Services without external grant funding. Safe infant sleep was a high priority for both the state of Maryland and Baltimore City. For example, in 2013, Maryland passed statewide legislation to ban crib bumpers.¹¹ From 2009 until the pandemic, the mayor frequently spoke at large outreach events, such as the Safe Sleep Summits and community gatherings, about the importance of infant safe sleep and encouraged all Baltimore City residents to follow current safe sleep guidelines. Additional support from the jury commissioner allowed for playing the SLEEP SAFE video to all residents on jury duty and post informational flyers and posters in central waiting areas. Along with each of the delivery hospitals, Department of Social Services and Women, Infants, and Children offices, home visiting programs, and childcare programs showed the video to clients and employees as well as provided educational material.

BHB continues to combine federal, state, city, and philanthropic awards so that dollars have maximum impact. Public sector block grants make up most of the funding, but CareFirst, a local BlueCross health insurance provider, awarded over a decade of funding to Baltimore City, which allowed the health department to launch and sustain a population health strategy inclusive of social marketing.

In recent years, as public and private sector funding priorities have shifted, particularly with the pandemic, the ability to widely engage in citywide safe sleep education and outreach has become challenging. There has been a necessary shift to rely on short, targeted mass media campaigns (including social media, billboard ads, and bus ads) during winter and summer months when weather is more extreme, putting infants at higher risk of sleep-related death because of intercurrent illness or overheating. Working with an expert communications team has been essential in developing effective, high quality media campaigns.

Since 2010, BHB has trained more than 5000 clinical providers from 220 venues on safe sleep. With the wide dissemination of educational materials, it is not possible to estimate the number of families impacted through educational campaigns. After implementation of the SLEEP SAFE video in 2013, in a survey of home visiting clients, 93% reported seeing the video before labor and delivery hospital discharge (unpublished program evaluation data). The BHB Facebook and Instagram pages are updated at least weekly with educational information and have over 7000 followers, with over 100 000 impressions. Details of outreach campaigns for April 2019 through January 2023 are shown in Table 1.

Methods tracking of outreach results have varied since the partnership between the jurisdictions began. With recognition of the uptick in SUID incidence in 2020, both Baltimore City and Baltimore County Departments of Health have implemented standardized outreach tracking. In Baltimore County (not including Baltimore City), since November 2020, there have been 7343 safe sleep education encounters with community members, 350 portable cribs distributed, 649 sleep sacks distributed, and 30 community events where safe sleep education was demonstrated.

Since the first Safe Sleep Summit in 2013, there have been 4 subsequent summits. The average number of attendees at each summit was 131 (range 84–168), with participation of clinical staff from all county and city birthing hospitals. After the 2013 Safe Sleep Summit, a safe sleep toolkit was created, which has been accessed by over 4000 providers to date. An outreach listserv was developed and updated annually that currently includes 750 providers. It is used to inform providers of new guidelines, public health campaigns and messaging, and relevant data.

By providing hospital leadership with feedback about infants that died of SUID in an unsafe sleep position, each hospital can develop and implement safe sleep educational interventions tailored to their staff and providers. Many hospitals implemented the Cribs for Kids best practice of creating safe sleep policies, providing and modeling consistent education using videos or other educational strategies, and having parents sign commitment statements to follow safe sleep practices.¹² 

Two hospitals have used the CFRT feedback to create SUID rate run charts to visually share outcomes of the performance improvement efforts. Prior work from MedStar Franklin Square was published in 2018 and demonstrated a significant decrease in sleep-related infant deaths.¹⁰ This work has subsequently been replicated at a second hospital, Sinai Hospital of Baltimore (unpublished program evaluation data). Performance improvement efforts began in Spring 2019, and each death has led to improvements in how the hospital counsels families of infants (Fig 2). Although there has been some variation (eg, notable spikes in 2020 and 2022), there has been an overall decrease in the mean deaths per 100 births (Fig 2).

The partnership between CFRTs has allowed for real time recognition of trends in sleep-related infant mortality and immediate responses. From December 2022 to February 2023, there were 18 sleep-related infant deaths in Baltimore City and County, a 3-month total that exceeded the entire previous year. These deaths coincided with the “tripledemic” of coronavirus disease 2019, influenza, and respiratory syncytial virus, and almost half of the infants who died had documented respiratory illnesses in the 72 hours preceding death. CFRTs immediately reached out to public health officials, hospital leaders, and physician liaisons to raise awareness and increase prevention efforts. Media campaigns, changes to hospital discharge instructions, and public health messaging that focused on the risk of sleep-related infant mortality with intercurrent illness were developed and promoted within 1 week.¹³ 

The overall outcome of these coordinated outreach efforts has been an associated decrease in sleep-related infant mortality: from 13.5% in 2009 to a historic low of 8.4% in 2015.¹⁴ Further, the disparity between the mortality rates for Black and white babies has narrowed by more than 50%.² Figure 3 describes trends before and after formation of BHB and coordination of efforts. Since the historic low in 2015, SUID rates have fluctuated. Most recently, there has been an increase, potentially attributed to decreases in funding and prevention efforts (unpublished program evaluation data). Despite the uptick in sleep-related infant mortality in recent years, real time tracking of trends with concurrent development of public messaging campaigns has likely mitigated further, more drastic increases.

This advocacy case series highlights the importance of coordinated regional CFRTs to decrease sleep-related infant mortality. Fatality review without concrete action is ineffective in decreasing child mortality and can lead to frustration among team members. Real time feedback to key stakeholders in the community and leaders in the healthcare setting has been essential to implement changes. Ongoing feedback over the past decade has resulted in significant changes to safe sleep efforts throughout the County and City and, most importantly, a decreased infant mortality rate. The rapid response to the surge in SUID cases during the Winter 2023 “tripledemic” exemplifies this procedure for communication and feedback. With shifts in funding priorities, changes in outreach strategies to focus on short, mass media campaigns developed in conjunction with an expert communications team has allowed for broad reaching public education and prevention efforts.

These efforts also highlight the importance of partnerships between CFRT, birth hospitals, and healthcare providers in ambulatory settings to decrease SUID. Through data provided and education reinforced by summits, we have enacted changes to decrease regional sleep-related infant mortality. A regional approach, rather than one governed by jurisdictional lines, is important for information sharing and collaboration.

Next steps involve sharing and translating this model to other geographic locations throughout the United States. Through BHB, there are current efforts to provide technical assistance to other jurisdictions across the country. Other metropolitan areas may face similar challenges where models of cross-sector communication and feedback are essential.

Coordinated CFRT efforts with community and hospital partnerships are needed for effective data sharing, feedback, and enacting real time SUID prevention efforts. Community partnerships will continue as well as expand in the coming years. Ongoing outreach efforts to hospitals with partnerships with the Maryland Patient Safety Center Neonatal Collaborative will help provide consistent education across all birth hospitals. Expansion of hospital partnerships and data dissemination efforts to reach the entire state are planned. Most importantly, through ongoing active partnership with community and hospital champions, we will continue efforts to decrease sleep-related infant mortality.

We thank Dr August Scott, Team Lead for US Initiatives at the Center for Communication Programs; the staff at the Center for Communication Programs in the Johns Hopkins Bloomberg School of Public Health, who developed the public health messaging campaigns detailed in this manuscript, and contributing data; Cathy Costa, Director of Strategic Initiatives in the Bureau of Maternal and Child Health at Baltimore City Health Department, who oversees Child Fatality Review Team for Baltimore City, the data from which was integral to this manuscript preparation; Lloyd Provost for his help with the Shewhart charts and methodology; and all members of the Baltimore City and County Child Fatality Review Teams mentioned in this manuscript who work tirelessly to understand and identify causes of child deaths.

CDR

child death review

CFRT

child fatality review team

SUID

sudden unexpected infant death