III.E.2.c. Perinatal/Infant Health: Annual Report (10/1/2021-9/30/2022)

State Priority Need:

Reduce Preventable Deaths in the MCH population with a focus on reduction and elimination of inequities in mortality rates.

National Performance Measure (2020 - 2025):

NPM 3: Risk- Appropriate Perinatal Care.

Evidence Based/Informed Strategy Measure (2020 - 2025): 

ESM 3.1: Percent of delivery hospitals surveyed to determine OB and neonatal level of care as detailed by Indiana Rules.

In October 2010, the Division of Maternal and Child Health (MCH) initiated the Hospital Levels of Care Task Force. Its goal was to ensure that all pregnant patients deliver at a hospital that could provide a risk-appropriate level of care. Because Indiana did not have a formal process for designating levels of care for the state’s birthing hospitals, the Task Force was asked to 1) assess the current level of care definitions; 2) create standard definitions and guidelines for each hospital level of obstetric and newborn care; and 3) make recommendations to the health department and professional organizations on policy needed to improve quality perinatal care and what the next steps should be.

During the 2018 Indiana legislative session, MCH was given the authority to establish a program to certify perinatal levels of care designations for every delivering hospital and birthing center in the state. Indiana Perinatal Hospital Services rules (levels of care) were designed to ensure all women of childbearing age receive risk-appropriate care before, during, and after pregnancy, with a long-term goal of reducing infant mortality rates in Indiana. The related rules were revised in 2018 to ensure continued compliance with evidence-based practice guidelines and recommendations from national organizations such as the American Congress of Obstetricians and Gynecologists (ACOG), the Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN), and American Academy of Pediatrics (AAP).

The central goal of this process remains to provide support and guidance to all delivering hospitals in the evaluation of the level of care that most appropriately defines their practice. The nurse surveyor team has seen marked improvement in the quality of care delivered when comparing gap analysis results from 2015 to the results of facilities’ surveys.  Indiana’s team of hospital surveyors continues to collaborate actively and partner with each of our delivering facilities in offering assistance with compliance to each rule.

MCH successfully achieved the set goal of 100% of birthing facilities having been surveyed as of August of 2022. This was an amazing accomplishment as the MCH promogulated the Perinatal Level of Care (PLoC) rules in September 2019. Even though the goal was achieved, MCH will still monitor, advise, adapt, and recertify for this program.

Perinatal Levels of Care Continuation

The Maternal and Child Health (MCH) clinical team at IDOH comprises five skilled nurses with extensive experience in perinatal nursing.  Together, they collaborate closely with all 81 delivering facilities to determine the appropriate level of care needed for obstetric and neonatal cases. Each nurse surveyor has developed a strong partnership with their assigned facility and relies on these relationships to carry out their essential duties.

MCH has been working with delivering hospitals to complete a gap analysis as part of the Perinatal Level of Care process. This has involved MCH staff providing technical assistance and training to help hospitals meet the required level of care. Currently, 19 out of 19 Level III/III birthing facilities have submitted their application for their hospital recertification. As of December 2022, 8 out 19 hospitals have completed their recertification survey and designation.

The MCH’s Clinical Team has worked through considerable challenges and problem solving to help facilities navigate through the designation process. Not only were hospitals dealing with considerable barriers due to the COVID-19 pandemic, but they also faced staffing shortages within units and on transport teams creating additional challenges for many facilities. The Clinical team worked with each facility individually to understand their unique challenges and strengths. The team used tools such as remote chart reviews, flexible scheduling, and the increasing use of tele-health to evolve MCH’s survey process.

The MCH Clinical team developed a PLoC Advisory Process to mitigate the many challenges that jeopardize the facility's ability to maintain its certified PLoC. In September 2022, a PLoC Notification of Change application was created for birthing facilities to notify the MCH clinical team of organizational changes. Based on the changes, the team will address each change based on a high or low priority. The MCH clinical team sought guidance from clinical experts to provide to the State Health Commissioner. Based on the State Health Commissioner's feedback, the MCH clinical team met with the impacted birthing facility to develop a plan and reporting process. In addition, it monitored the progression of resolving the deficit every month. 

Our MCH clinical team continued to seek innovative ways to partner with key partners and providers to identify and/or develop initiatives that support best practices for our maternal and neonatal patients in Indiana. An additional plan for the team is the development of the Maternal Clinical Outreach Program. The purpose of the outreach program was to offer educational opportunities to free-standing emergency departments and non-delivering critical access hospitals and assist our Perinatal Centers with educational offerings for our rural hospitals. The MCH clinical team was able to teach S.T.A.B.L.E Program (Sugar, Temperature, Airway, Blood Pressure, Lab Work, Emotional Support), a widely distributed and implemented neonatal education program.  It focuses on the post-resuscitation and pre-transport stabilization care of sick infants. It offers practical and effective education to healthcare providers to help reduce infant morbidity and mortality and improve neonatal outcomes. To further reduce infant mortality and morbidity, the MCH Clinical Team has identified their efforts and plans to continue building the teams capacity to teach beginner and intermediate Fetal Monitoring Courses. Additional education provided by the MCH Clinical team included six (6) Neonatal Resuscitation Program (NRP) courses.  Five NRP courses were taught for rural Indiana birthing hospitals, and one was taught for a non-delivering free-standing emergency department. The MCH Clinical Director also partnered with a level III and IV birthing hospital to host one AWHONN Obstetric Patient Safety Course (OPS) course for ten students. The class has participants from four different hospitals located throughout Indiana.

Perinatal Centers

On November 2, 2020, the MCH Division appointed ten (10) perinatal centers. Centers will assist all affiliates in their effort to provide high-quality services throughout the system and promote risk-appropriate obstetrical and neonatal care through the improved use of resources. Perinatal centers and affiliates established a Memorandum of Understanding by November 2, 2021. Throughout 2022, the centers met with their affiliates to conduct needs assessments and analyze unit-based data to develop quality improvement goals. Indiana Perinatal Quality Improvement Collaborative (IPQIC) and MCH hosted quarterly meetings to examine the perinatal center's needs, challenges, and accomplishments with their affiliates.

The MCH Epidemiology team worked to support the efforts of the Indiana Perinatal Centers by providing two iterations of quarterly data reports based on key metrics such as C-sections, inductions, and transfers at the hospital-level. These individualized reports were specific to the Perinatal Centers but also contained deidentified data on that Centers’ affiliates. The reports were based on preliminary Vital Records data that were pulled and cleaned by the MCH Epidemiology team. Providing preliminary data such as this had not previously been done by the team, so the team invested considerable effort in making sure the process was handled appropriately. Due to the expectation of low counts when looking at the hospital-level, especially for the smaller and lower Level of Care facilities, reports were created using rolling six-month pulls of the data.

This data could be used by the Perinatal Centers to begin discussions of quality improvement with their affiliates, ensuring that each facility has the education and trainings they need to provide high-quality care and get their patients to a facility of the appropriate risk-level. To ensure the data provided met the Centers' needs, the MCH Epidemiology team and the MCH Clinical Director hosted individual meetings with each perinatal center. The sessions allowed the Centers to ask questions about the data provided and discuss continued quality improvement. 

Alliance Innovation for Maternal Health (AIM)

MCH has developed relationships with external partners at the Indiana Hospital Association and internally with our epidemiology team to study inpatient data, outcomes data sourced from the birth worksheet, and process measures through the AIM to better understand what each facility can do to improve its clinical practices.

In the reporting year 2022, the MCH team hosted monthly webinar meetings to provide education that addressed data findings, health equity, and sustainability for the AIM: Obstetric Hemorrhage and the Severe Hypertension in Pregnancy bundles.

Transport Programs

Perinatal centers require Maternal-Fetal and Neonatal Transport programs to transfer patients to tertiary care centers safely. These programs follow the Indiana Perinatal Transport Guidelines, which adhere to evidence-based Certified Air and Medical Transport Systems (CAMTS) and Air and Ground Transportation guidelines from the American Academy of Pediatrics (AAP). The guidelines prioritize safety culture routines, quality assurance measures, education, competencies, and certifications for the transport team members and leadership, ultimately improving maternal and neonatal outcomes. Evaluating transport programs includes essential standards for inter-facility transfers and managing transport teams.

However, Indiana's transport system faces ongoing challenges: transport teams are overburdened and understaffed, and policies and procedures for returning infants to their 'home' hospitals needs improvement. Families may need to travel long distances to see their sick babies because the neonate needs a higher level of care. Frequently, there is confusion regarding transportation reimbursement back home, leading to ineffective communication with the "home hospital."

The Indiana Perinatal Quality Improvement Collaborative (IPQIC) transport committee is examining the issue of 'back transport' and other important policy issues. In 2021, the committee updated the transfer algorithm to ensure the appropriate movement of mother-baby dyads. Transport teams were also enrolled in the GAMUT (Ground Air Medical Quality Transport) program, which provided education and tools to improve identified gaps.

Based on data from two reports, the IPQIC Transport Committee hosted a perinatal conference to address quality improvement. Additionally, the department appointed a chief nurse consultant to oversee all transport teams, standardize transport protocols, new hire orientation, and quality improvement projects, and provide a platform for transport nurses to discuss challenges and success stories.

Substance Exposure/NAS

IPQIC continued work with the substance use collaborative collecting data from cord blood tissue at participating hospitals. The following data is only representative of the births occurring in the hospitals that participate in the Perinatal Substance Use Hospital Collaborative and the data are subject to each hospital’s practice, coding, and definition of NAS. It's also important to emphasize that any changes from 2021 to 2022 should be explained within the context of hospitals diagnosing and reporting NAS individually, often using different criteria to determine if a cord should be tested and possibly using a different panel to discern positivity. Hospitals operate using different algorithms to determine when to test a cord and that process is heavily dependent on the care provider’s experience. Also, with the addition of new hospitals to the collaborative in 2022, there is substantial change in the number of infants eligible to be tested and diagnosed. All of this makes it very difficult to compare data year to year. Instead, the data should be used as a one-time snapshot of participating hospitals and their current practices.

The statistics provided below comes from the 2022 Perinatal Substance Use Hospital Collaborative and the data reported by participating hospitals.

• On average, there are about 80,000 births occurring in Indiana annually.

• In 2022, over 67,000 births occurred at hospitals participating in the Perinatal Substance Use Collaborative.
• In 2022, 71 out of 84 birthing hospitals were participating through data submission. Of the newborns delivered at participating hospitals, 19.3% of births had cords tested have been tested for drug exposure.

• Of the tested umbilical cords, 36.2% of tested cords were positive for drug exposure.

• The rate of NAS diagnoses per 1,000 live births was 9.6 (653 NAS cases) in 2022.

Over the past few years, MCH has noted increasing exposure to cannabinoids and the collaborative has added fentanyl exposure testing as we see increased overdose deaths associated with fentanyl exposure.

State Priority Need:

Reduce preventable deaths in the MCH population with a focus on reduction and elimination of inequities in mortality rates.

State Performance Measure (2020 - 2025):

SPM 3: Reduce disparities in Infant Mortality.

Infant Mortality Data Report

To take a more in-depth look at infant mortality across the state of Indiana, the MCH Epidemiology team utilized linkages between birth and infant death records. After analyzing this data, the Epidemiology team was able to create a series of fact sheets which were combined to form a report on Indiana infant mortality. This report summarized findings on disparities by race and ethnicity, underlying cause of death, age (both infant and pregnant person), birth spacing, gestation, and factors specific to the pregnant person such as previous preterm birth, prenatal care, smoking during pregnancy, pre-pregnancy diabetes, chronic hypertension, and BMI.

This report moved beyond the general birth outcomes and infant mortality information that the MCH Epidemiology team historically has provided. Because addressing infant mortality across the state, especially disparities in infant mortality, can be a complicated endeavor which requires pulling together a wide variety of resources, the MCH Epidemiology team worked to supply a more comprehensive picture of key risk factors and made sure to lay out the data by race and ethnicity when disparities were present. This report can be utilized internally by the MCH team but can also be drawn on by partners around the state in their work.

Safety PIN (Protecting Indiana’s Newborns)

From 2005 until 2015, Indiana had some of the worst Infant Mortality Rates not only in the Midwest, but in the entire United States. To combat the trend and to help stop preventable deaths of infants, Indiana passed legislation for the Safety PIN (Protecting Indiana’s Newborns) Grant Program, IC Section 16-46-14. This legislation allowed non-reverting appropriated state funds to be granted to organizations to reduce infant mortality. This state funding and support from the Indiana legislators is essential to further reducing infant mortality. 

The Maternal and Child Health Division (MCH) distributes the Safety PIN funding statewide to grantees with the goal of reducing infant mortality. The selected grantees are awarded based on measures such as their application, current and historical infant mortality rates, and other related risk factors (i.e., smoking during pregnancy, prenatal care in the first trimester, and safe sleep deaths). Every awarded organization has their own target population and programmatic layout which could span by region, county, or organization wide depending on the reach and needs of the community. To date, the department has funded a variety of programs including Doula services, Home Visiting, tobacco cessation, statewide hospital initiatives, safe sleep promotion, staff education, parent education, Paramedicine, and Fetal Infant Mortality Review (FIMR) teams.             

During Fiscal Year 2022, MCH awarded fourteen applications across two cohorts. Safety PIN was able to absorb the cost of the Title V FIMR teams to increase the funding available to award through Title V for the first cohort. For the second cohort, MCH released an RFA and awarded grantees based off community needs and data, information from the Title V Needs Assessment, and other scoring factors. This new cohort is compiled of seven organizations with programs such as home visiting, integrated mobile health, care coordination, and substance use prevention.

Currently, there are six cohorts and twenty-seven awarded grants being implemented in 50 counties in Indiana. The evaluation that started in 2021 continued throughout this year looking at the four priority outcomes.

• Outcome 1: By March 2023, MCH will determine if the grantees are reaching the proposed number of infants, mothers, partners, and families that are provided with education and care from Safety PIN funding annually.
• Outcome 2: By March 2023, MCH will determine the demographics of those served to provide a clear picture of Safety PIN.
• Outcome 3: By March 2023, MCH will determine infants birth weight and gestation age at birth in the program.
• Outcome 4: By March 2023, MCH will determine if there is an improvement of the infant mortality rate in selected regions.

Over the past year all grantee cohorts were collecting data utilizing the quarterly reports. These reports helped to paint a picture of the work being done by grantees around the state. Based on the initial analysis of the 2022 annual data, 7011 participants were served across 12 programs in 59 counties. Pregnant and postpartum participants made up 5,183 of those served, with 1516 infants and 284 other caregivers served. Of these participants, 47.9% were on Medicaid and 11.3% were uninsured. This was a decrease in coverage from the previous year’s numbers of 59% on Medicaid and 5%. Multiparous clients, those having birthed more than one child, made up 58.1% of those served. The programs and services offered by grantees have filled an essential role – serving those who do not qualify for other evidence-based home visiting programs due to certain entry qualifications.

The MCH Safety PIN FIMR funded teams also submit quarterly reports that look for information from the Case Review Teams (CRT) and the Community Action Teams (CAT). The CRT reviewed 175 cases across the seven teams and of those cases 110 were infant deaths and 65 were fetal deaths. Some of the trends that were seen by the teams were unsafe sleep, substance use disorders, and not knowing signs of pre-term labor. While this is the first year that FIMR falls under Safety PIN, these teams will continue to review cases, collect information, and make recommendations to the CAT team to help reduce preventable deaths.

In the late summer/early fall of 2022, Indiana had a special legislative session where senate bill two was passed which awarded the Safety PIN fund an additional $5,000,000. This funding will be allocated toward reproductive health and contraceptive care access across Indiana. It did set in place that no one under the age of eighteen without parental consent and those within school programs could receive contraceptives.

Fetal Infant Mortality Review (FIMR)

To address infant mortality in Indiana, the Division of Fatality Review and Prevention (FRP) coordinates the Fetal and Infant Mortality Review (FIMR) Program. FIMR is an action-oriented community process that continually assesses, monitors, and works to improve service systems and community resources for women, infants, and families. FIMR teams in Indiana examine the circumstances surrounding the lives and deaths of mothers, infants, and even fetal deaths. By sharing their discoveries with Community Action Teams (CAT), they generate innovative solutions to enhance birth outcomes and lower mortality rates. FIMR teams review deaths that occur during pregnancy and infant deaths that occur within the first 12 months following delivery. Alongside death reviews, maternal interviews hold a crucial role in the FIMR process, offering valuable insights into mother's experiences prior to and during pregnancy, as well as during the unfortunate events of the infant’s passing. Interviews include descriptions of mothers’ encounters with local service systems and provide information about social determinants of health. The FIMR Program at IDOH currently has 17 teams covering 36 counties across Indiana.

Currently, the Indiana FIMR Network utilizes the National Center for Fatality Review and Prevention (NCFRP) Case Reporting System to maintain data and findings resulting from the FIMR reviews. The Indiana FIMR Program Manager prioritized improving data entry by local teams by providing virtual training and direct assistance with data entry processes. Data quality checks are regularly conducted by the FRP epidemiologist, and feedback was provided to local FIMR team coordinators. Particularly for those FIMR teams directly funded by Title V grants, data entry and timely reporting are program requirements. The Indiana FIMR Program Manager attended 41 local FIMR team meetings and provided guidance and training as needed. A particular challenge for the FIMR team included compiling annual data for analysis. In order to have a less time-consuming process, the Indiana FIMR Program Manager began development of an internal IDOH FIMR Data Report that will be used to track data at the local and state levels to address trends and community needs.

Local FIMR teams continued to implement prevention initiatives. For example, the St. Joseph County FIMR team hosted multiple meetings of a Birth Equity and Justice Workgroup. By partnering with local professionals of color and minority-serving agencies, the St. Joseph County FIMR team improved its outreach to and for marginalized populations and advised local policymakers on ways to improve outcomes for the most vulnerable mothers and infants. The team executed a well-attended Achieve Birth Equity Conference on black infant and maternal health in April 2022.

Another example comes from the Southwest Regional FIMR Team, supported in part by a Title V grant. This team formed a subcommittee to address its high number of unsafe sleep-related infant deaths. To date, the team has conducted a SWOT analysis among all family-serving organizations in the four-county region. Ultimately, the subcommittee hopes to create a uniform safe infant sleep message for all professionals (clinical, social, first responders, etc.). 

Finally, the Allen County FIMR team identified several prevention and intervention activities for the local community. Allen County does not have a formal CAT structure, but the FIMR coordinator there is intentional with providing data and recommendations to the multiple community partners already actively working to support pre-, ante-, and post-natal health in the area. This FIMR team has provided safe sleep education to all middle school children attending Fort Wayne Community Schools and community health workers improved their delivery of safe infant sleep messaging during home visits. The team increased efforts to meet the needs of the large Burmese population, including improved language services and the use of members of population to engage families and ensure culturally appropriate care.

Other local FIMR teams’ activities included:

• Bartholomew County – Began in 2017 in response to several fetal demises in their community hospital, the Bartholomew County FIMR team immediately recognized the need for the simultaneous development of a CAT to implement their prevention recommendations. The FIMR coordinator was able to improve safe infant sleep education across clinical and social service providers which reduced infant deaths in their county. The FIMR Coordinator also developed a perinatal mental health support system along with NASCEND training for the entire staff within the health system and community.
• South-Central Regional – The South-Central Regional FIMR team consists of five counties that each host their own FIMR team as well as a CAT. A common trend noted in the region was the presence of human trafficking resulting in fetal demise. The FIMR Coordinator worked with community partners and held a well-attended human trafficking training for all local law enforcement agencies and DCS. Another notable trend in this region was the lack of support and quality care for pregnant inmates. The local FIMR Coordinator worked with the local sheriff in each county to incorporate pregnancy care support, weekly ultrasounds, and STI testing and treatment for pregnant inmates.
• East Central Regional – The East Central Regional FIMR team is made up of six counties with one large hospital system. Beginning in 2021, this team has effectively met monthly to review infant and fetal demise cases and is working alongside their CAT to put prevention measures into place. Obtaining maternal interviews since Covid-19 has been a challenge for many FIMR teams across the state, however, this team has successfully interviewed most of their families so far. They are working on best practices and have been sharing their tips with the entire Indiana FIMR Network for better maternal interview outcomes.

New partnerships with the Indiana FIMR Network continue to be developed, as the issues affecting Indiana women and infants are further identified by local teams. An area of focus for FIMR has been bereavement and grief support for families after a loss. Local FIMR coordinators are gathering data to see what bereavement services and follow-up support are offered in their communities. The Indiana FIMR Program Manager created a Bereavement Guide that was shared statewide beginning in August of 2022. WIC has stated that the Bereavement Guide has been one of their most used resources across the state since it was created. Another cross-cutting focus of the FIMR Program has been on lactation education after a fetal loss. This will be a partnership with IDOH DNPA, MCH, CareSource, and The Milk Bank.

Safe Sleep

The Fatality Review and Prevention (FRP) Division continued promoting infant safe sleep and Sudden Unexpected Infant Death (SUID) prevention strategies. The Infant Safe Sleep/Community Action (ISS/CA) Program released new safe sleep materials, including three videos with mothers who lost infants in unsafe sleep environments, six different postcards, two posters, window clings, floor talkers, and table tents. The content of these materials was based on the results of focus group data analysis that was completed in the summer of 2021. During the reporting period, more than 100,000 individual printed items were distributed to safe sleep educators throughout the state, and the videos were viewed more than 1.4 million times.

The Program provided ongoing support for existing Community Action Teams (CATs) and worked on developing new teams in high-risk counties. CATs work at the local level to prevent infant mortality by building on the existing strengths of communities. By September 30, 2022, there were 25 CATs covering 32 counties in Indiana. Community Coordinators continued to provide CATs with safe sleep resources, training, and technical assistance. For example, the ISS/CA program provided funding and technical assistance to Ball State University School of Social Work’s Healthy Mothers Program. This program held nine, 90-minute facilitated discussions delivered through a webinar format. The monthly facilitated discussion sessions included a 30-minute data-driven and research-based presentation by a local community member with specific expertise in the areas of infant care.

In November 2021, ISS/CA Program presented at the Labor of Love conference. During this presentation staff were able to showcase the recently developed safe sleep campaign videos while gaining feedback and insight into the reactions of local partners who will be utilizing them.

Throughout this reporting period, the ISS/CA program provided Charlie’s Kids Sleep Baby Safe and Snug books to counties throughout the state. Over four thousand books were distributed to organizations to increase the importance and education of safe sleep. The program also distributed 1,813 portable cribs and 1,902 sleep sacks to safe sleep educators throughout the state.

SUIDI Training
FRP also works to improve how infant death scenes are investigated. To create more consistent investigations and protocols, Title V Block Grant funds will continue to be leveraged to augment the injury prevention work for FRP. CDC-trained trainers assisted staff in providing Sudden Unexpected Infant Death Scene Investigation (SUIDI) trainings across the state, upon request. The trainings are provided in multiple locations, to facilitate accessibility by all death investigators and their respective jurisdictions. Training sessions teach the appropriate responses and protocols at the scene of an infant death and emphasize the importance of standardization, community collaboration, and services to surviving family members. SUIDI trainees are also encouraged to become active members of their local FIMR and CFR efforts, if appropriate. Training sessions, supported in part by Title V funding, also provide opportunities for FRP to supply safe sleep educational resources to communities as well as the tools necessary to conduct standardized SUIDI, including a scene re-enactment doll. FRP provided three regional trainings during the reporting period, each with approximately 80 participants. The full day training sessions were offered in-person to improve accessibility for death investigators and their respective jurisdictions. More than 180 infant death scene reenactment dolls were disseminated to coroners, law enforcement agents, and child welfare workers across the state.

FRP continued to work with the Centers for Disease Control and Prevention (CDC) to participate in the SUID and Sudden Death in the Young (SDY) Case Registry grant, which was awarded to FRP in 2018. The five-year grant aims to enhance IDOH’s coordination with the CDC’s SUID/SDY Case Registry. It also supports efforts to improve investigation techniques, promote safe sleep education, and obtain more accurate and complete data for the registry through work with state and local child fatality review teams, coroners, law enforcement and the Indiana Department of Child Services. Using the 54 already-functioning CFR teams and training any additional teams formed during the next reporting period, the program will ensure all necessary records are collected, entered into the CRS in a timely manner, and checked for accuracy by the end of 2021. FRP staff will continue to on-board coroners to the project to ensure tissue and blood samples can be saved at autopsy and that all child deaths that are eligible for the project are captured and analyzed. This project will continue to grow through 2023.

For any of the SUIDs whose cause of death remained unexplained after a review by the local FIMR or Child Fatality Review (CFR) team, escalation to an Advanced Review Team (ART) occurs. Developed as a subcommittee to the Indiana Statewide Child Fatality Review Committee to support the SUID/SDY Case Registry project in Indiana, ART is made up of an esteemed panel of specialists and doctors including a forensic pathologist, epileptologists, pulmonologists, cardiologists, geneticists, genetics' counselors, and others. ART does a deeper review of medical records, care levels, lifestyle patterns, the autopsies, and possible genetic testing of children that die suddenly and unexpectedly. ART examines the medical aspects and triggers that may have caused an underlying condition such as cardiomyopathy or a seizure disorder to cause the death when no other factors were found at autopsy. The team can also make suggestions for genetic testing if postmortem blood is available and there is concern for other family members. While the program is still growing, coroners can take blood and tissue samples at the time of autopsy for any child that dies suddenly and unexpectedly to send to the MPHI biorepository for DNA banking and/or research, upon family consent. This portion of the SUID/SDY Case Registry offers families the unique choice to save their child’s DNA if they ever decide to have future testing done and allows the family to consent for their child’s DNA be used in genetic research.

Governor Eric Holcomb announced the 2022 Next Level Agenda for the state of Indiana in January 2022. The agenda includes expanding data collection surrounding SUIDs to better understand the root causes of these deaths. The improved data collection will be used to develop effective programming and services. Inclusion of SUIDs in a statewide agenda demonstrates the strong support for improving how SUIDs are investigated in the state.

In addition to the 2022 Next Level Agenda, new legislation (House Enrolled Act 1169) was passed in 2022 to establish consistent standards for SUID investigations. This act took effect July 1, 2022, and it aligns Indiana’s process for investigating SUIDs with the best practices developed by the CDC. This alignment will ensure that coroner investigations into deaths among healthy infants and children who die suddenly and unexpectedly are handled consistently across the state and will include imaging, pathology, and toxicology.

Once FRP has finalized and analyzed 20 SUID data, outcomes and findings will be disseminated to CFR teams and CATs to ensure the correct education surrounding safe sleep is being received by the public. Communities use trend information to guide the focus of their prevention work, as well as address any disparities revealed by the data. Analysis has included opportunities for improvements in SUID investigations and community response. By identifying gaps, FRP can highlight to coroners and death investigators where and how they might improve their processes. It also aided in determining which, if any, resources must be procured to meet this need (i.e., SUIDI reporting forms, training sessions, re-enactment dolls, etc.). As some of the funding is earmarked to support the improvement of infant death investigation protocols, FRP determined if any jurisdictions required support for the necessary toxicology or autopsy equipment and began a process to support them appropriately.

Genomics & Newborns Screening Program

The Genomics and Newborn Screening Program consists of the heel stick screening, critical congenital heart defect screening, and birth defects surveillance. Throughout the last year, the GNBS program restarted conducting hospital visits as they were paused during the COVID-19 pandemic. Hospital visits are conducted to ensure all newborns are screened as outlined by the updated CCHD regulations and answer any questions regarding changes to newborn screening throughout the last several years. The GNBS program continues to monitor quality indicators for each delivering hospital. The quality indicators are discussed during each hospital visit. By monitoring timeliness and accuracy, the time for follow-up and potentially life-saving care can be reduced. For any hospital that has poor quality indicators, the GNBS program will initiate an audit. An audit consists of hospital staff completing online training the program has developed, submitting a plan of correction, submitting newborn screening logs as required by state statute, and an onsite visit. Hospitals have been receptive to this process, and improvements in newborn screening quality at hospitals that have been on audit.