The Perinatal Health Strategic Plan (PHSP) and the Early Childhood Action Plan (Healthy Babies) is the driving force for the WHB’s and WCHS’s work in this particular domain. The PHSP is making an impact by identifying how collaborative partner organizations’ scope of work align with the PHSP using an environmental scan survey. The PHSP has continued to support and foster new partnerships. For example, the intersection of substance use and tobacco, as well as perinatal incarceration, has created the opportunity to work with new partners. Regular PHSP meetings now highlight speakers/organizations from various domains to increase awareness of organizations working on different social determinants, but there is still more work to do in branching beyond the public health space to engage more deeply with new partners. The PHSP provides a foundation for coordinated strategy throughout North Carolina and identifies varying organizations’ roles in that strategy. When working on proposals or thinking through our larger approach, PHSP partners can turn to the plan to ensure that the work we are doing addresses the larger goals:

Goal 1 – Improving Health Care for Women and Men

Goal 2 – Strengthening Families and Communities

Goal 3 – Addressing Social and Economic Inequities

 

NPM#3 – Percent of very low birth weight (VLBW) infants born in a hospital with a Level III+ Neonatal Intensive Care Unit (NICU)

 

One of the strategies in the PHSP is to: Ensure that all pregnant women and high-risk infants have access to the appropriate level of care through a well-established regional perinatal system with one of the action steps under that strategy being to define levels of neonatal and maternity care services for hospitals. While each birthing hospital completes an Annual Hospital Renewal Application through the NC Division of Health Services Regulation, the information currently collected is not enough to determine whether a hospital meets the most recent American Academy of Pediatrics (AAP) and American College of Obstetricians and Gynecologist/Society for Maternal-Fetal Medicine (ACOG/SMFM) criteria for neonatal and maternal levels of care. The ultimate goal is for all the hospitals to follow the latest AAP/ACOG/SMFM guidelines. Until this goal is reached, the state data for NPM#3 are based on the current self-designated levels of care which do not align with the AAP guidelines. Data for 2019 show that 80.1% of VLBW infants received care at currently designated Level III+ NICUs, which is similar to data for the past five years.

 

Also connected to this effort was NC Legislation (Session Law 2018-93) requiring NCDHHS to study the Perinatal System of Care in our state. DPH partnered with the NC Institute of Medicine to convene a Task Force on the Perinatal System of Care. Using a 4-chair approach inclusive of the State Title V Director, a person with lived experience, a Certified Nurse Midwife, and the OB lead for the state’s Pregnancy Medical Home Program, this Task Force met monthly throughout FY20. A full Perinatal Systems of Care Task Force report was released in April 2020. Recommendations were categorized under the following themes: Inpatient Care, Labor & Deliver; Preconception, Prenatal & Postpartum Care; Support for Pregnant Women, Infants & their Families; and Postpartum Care. The Task Force members recognized and acknowledged the significant differences in outcomes in the above areas for women and infants of color, so the full report includes recommendations to explore strategies that have shown to decrease these inequities.

 

In FY20 two funded sites, UNC Center for Maternal and Infant Health (CMIH) and Vidant Health Foundation, participated in the third year of the Perinatal/Neonatal Outreach Coordination project implementation. The sites assessed 32 birthing facilities in Perinatal Care Regions (PCR) IV & VI using the CDC Level of Care Assessment Tool (LOCATe) for maternal and neonatal care. The sites continued work with birthing facilities to develop and implement policies that support immediate postpartum insertion of highly effective, long-acting reversible contraceptive (LARC) methods. The sites completed their policy development work with four hospitals in PCR IV and five hospitals in PCR VI. Collectively, the sites provided training on immediate postpartum insertion of LARC methods to 461 maternal health providers, which included a mixture of physicians, residents, nurse practitioners, registered nurses and midwives.

 

NC has limited state funding for the provision of High-Risk Maternity services. The High Risk Maternity Clinic program funded eleven prenatal clinics within LHDs along with East Carolina University in FY20 utilizing state dollars. The services are provided to help ensure that low-income women with medically complicated pregnancies have access to risk-appropriate perinatal services. High risk pregnancies can be identified at the onset or during the course of care due to maternal and/or fetal factors. Once identified, a provider may make the recommendation to the patient to transfer care to a clinic that specializes in managing such issues. Each funded site is required to provide clinical services along with access to licensed clinical social worker and a nutritionist. The High Risk Maternity Clinic program served 8,092 women during FY20.

 

NPM#4A-B – Percent of infants who are ever breastfed and B) Percent of infants breastfed exclusively through 6 months

 

Increasing the percent of infants who are ever breastfed or are breastfed exclusively through six months is a goal not only of the WCHS but also part of the state Early Childhood Action Plan. The most recent data available from the National Immunization Survey (NIS) data for NC births occurring in 2018 reported that 85% of infants were ever breastfed, yet by 6 months of age only 20.2% of infants were exclusively breastfed, below the national average of 25.8%. Additionally, breastfeeding initiation data obtained from birth certificates for infants born in 2019 indicate that 80.8% of all infants were breastfed at hospital discharge. However, this data reflects national trends of breastfeeding disparities, with Hispanic infants (87.5%) and non-Hispanic white (83.7%) more likely to initiate breastfeeding than non-Hispanic Black (70.1%) or non-Hispanic American Indian (51.7%) infants.

 

The onset of the COVID-19 pandemic further exacerbated the existing gaps in breastfeeding support in NC. Prior to March 2020, NC maternity centers were reporting a decrease in staff position and/or hours for lactation staff and the closure of maternity centers particularly in hospitals serving rural communities. The NC Breastfeeding Coalition’s (NCBC) statewide database for breastfeeding support further highlights the limited resources available to breastfeeding women in both rural as well as urban communities. This inequitable access to and availability of resources and support is a known contributor to racial and ethnic disparities. In August 2020, the CDC published a report documenting the impact of the COVID-19 pandemic on breastfeeding support. The report states that one in five hospitals reported reduced in-person lactation support and nearly 75% of hospitals discharged new mothers less than 48 hours to decrease risk of exposure to COVID-19. The CDC report also states the disconnect in messaging around breastfeeding and COVID-19 because of conflicting recommendations among professional organizations leading to guidance that negatively impacted the breastfeeding dyad. All actions conflicted with the recommendations issued by the World Health Organization who emphasized the importance and benefit of breastfeeding, importance of continuous skin to skin contact, access to skilled lactation care, and follow-up care.

 

During this turbulent period, NC took steps to address misinformation and ensure consistent messaging among our health care providers. In April 2020, the Regional Breastfeeding Coordinators pivoted to virtual trainings and developed and presented breastfeeding presentations for state and LHD staff to disseminate the most up to date evidence on breastfeeding and dispel myths. This education helped to elevate the concerns surrounding COVID-19 pandemic’s impact on breastfeeding to state policy makers and allowed state and LHD staff to provide a consistent message on breastfeeding. This resulted in the publication of two briefs on maternity care services including lactation support including the publication of the North Carolina Pregnancy & Continuity of Care During COVID-19 Task Force Recommendations, which the NC IOM provided their support and platform for distribution through the NC Maternal Health Taskforce, and the development of NCDHHS developed guidance resources on COVID-19 infections and vaccine and breastfeeding. NSB also collaborated with the Carolina Global Breastfeeding Institute to implement virtual prenatal education classes utilizing the Ready, Set, Baby curriculum. The curriculum was updated to include COVID-19 guidance.

 

The WCHS works in partnership with the NSB who operates the NC WIC Program to maintain and expand the state’s breastfeeding infrastructure. This collaborative approach within the WCHS including the NSB, WHB and C&Y Branch (along with the CDIS) prevents the duplication of activities and allows an integration of services with shared populations served and objectives. The expectation of a collaborative approach and the maximization of resources starts within the DPH with the DPH Breastfeeding Coordination Team, where quarterly, multidisciplinary staff who operate state programs with breastfeeding objectives meet for information sharing, needs assessment, and projects. The success of the coordination team is evidenced through inclusion of one ESM (the percentage of LHD whose Maternal Health staff members are trained on breastfeeding promotion and support through the NC WIC Program funded Regional Lactation Training Centers) chosen for this NPM as recommended by the 2011 Surgeon General’s Call to Action to Support Breastfeeding. The baseline established by the previous State Breastfeeding Peer Counselor Program Coordinator on July 1, 2015, was 55%. During FY20, there were 77 LHDs who had staff trained which is 100% of the LHDs currently providing direct services. Maternal Health staff members have been trained at 84 LHDs between 2015 and 2019 which is an increase from the 2015 baseline of 43. This measure is updated annually from the contractor reports provided by the Regional Lactation Training Centers’ Regional Breastfeeding Coordinator. The NSB continued its efforts to expand the implementation of the Breastfeeding Peer Counselor (BFPC) Program. In FY2020, all but one of the 85 WIC agencies in North Carolina accepted funding for the BFPC Program, surpassing the goal of 90% of the agencies.

 

Breastfeeding Support Efforts

The NC WIC Program operated through NSB is federally mandated to provide breastfeeding promotion and support to their participants through the anticipatory guidance, counseling, and breastfeeding educational materials, a greater quantity and variety of foods for breastfeeding dyads, longer participation in the program for breastfeeding mothers, access to breastfeeding aids such as breast pumps, and all staff trained in breastfeeding promotion and support. The NC WIC Program established the Regional Lactation Training Center to train breastfeeding peer counselors, breastfeeding peer counselor managers, public health agency staff and other medical professionals serving the WIC eligible population with accurate, standardized, evidence-based lactation management training and continuing education for in the respective perinatal region.

 

The NC WIC Program also contributed to the development and maintenance of the NC Lactation Educator Training Program operated by Northwest Area Health Education Center to provide a statewide program to train hospital and health department staff members. The objective is to support breastfeeding women across the entire state in a consistent and standardized manner. Since its implementation in 1996, the course has trained over 1,500 healthcare staff members in all 100 counties in NC. Five percent of total participants have become credentialed as an International Board Certified Lactation Consultant (IBCLC) as a result of course completion, leading to 70 new IBCLCs in North Carolina. In FY20, 116 healthcare staff members completed training.

 

Another ESM added in FY17 is the number of LHDs who are working toward or awarded the NCBC’s Mother-Baby Friendly Clinic Award for outpatient healthcare clinics including child health or maternity clinics. Criteria for the award were informed by Baby Friendly USA Guidelines and Evaluation Criteria and the Academy of Breastfeeding Medicine’s Clinical Protocol #14: Breastfeeding-Friendly Physician’s Office: Optimizing Care for Infants and Children. Criteria include, but are not limited to, the following:

• education on breastfeeding support in accordance with the level of competency required for their applicable role;
• provision of high quality prenatal and postpartum patient lactation education to ensure that mothers achieve their infant feeding goals;
• elimination of all advertising from infant formula manufacturers; and
• assurance that patients have access to breastfeeding support in their healthcare clinic and/or the community.

 

According to the NCBC website, the benefits to those LHDs receiving the award include public recognition of breastfeeding-friendly care, free marketing to the public about their success, increased patient satisfaction, and improved support for breastfeeding initiation, duration, and exclusivity. By 2020 a total of seven local health departments have received the award, and others are known to be working toward it. Additionally, the Child Health 351 Agreement Addenda (AA) added as evidenced based strategy as an optional activity to encourage and support LHDs to implemented breastfeeding friendly practices within their clinic. Two LHDs (Nash and Halifax) chose this strategy for FY19, and one chose it for FY20 (Swain).

 

Title V MCH Block Grant funds continue to support a Pediatric Nutrition Consultant (PNC) who works in the C&Y Branch that also helps promote breastfeeding efforts. The PNC engineered the inclusion of the evidenced strategy for the Mother-Baby Friendly Clinic award in the Child Health 351 AA as an optimal strategy. Additionally, the PNC serves the lead coordinator for the NC DPH Breastfeeding Coordination Team.

 

During the FY20, the PNC, in partnership with the NC DPH Breastfeeding Coordination Team members, contributed to efforts to enhance breastfeeding resources and practices statewide such as the following:

• The PNC served as a lead reviewer and writer in updating the NC Making It Work Tool Kit, a breastfeeding support tool kit which consists of five different tools targeted to breastfeeding moms, employers, family members, and advocates. These materials were originally adopted in NC with permission from the New York Department of Health several years ago and updated in FY20 and FY21.
• The PNC worked with the NSB staff to promote the NC WIC Program’s annual World Breastfeeding Activity. The activity aimed to encourage all local WIC agencies and their larger health departments/organizations to apply for and receive the NCBC’s Breastfeeding-Friendly Employers & Community Partners Award. The PNC provided feedback on the development and execution of the activity. Additionally, the PNC and C&Y Branch staff contributed to the promotion through dissemination within the public health nursing listserv.

 

The PNC also continued to integrate breastfeeding education, family engagement and Life Course Nutrition into the Child Health program through trainings conducted as part of the CHERRN course and through other Child Health programs, including work with programs that specifically target CYSHCNs.

 

NC DPH uses Preventive Health and Health Services (PHHS) Block Grant funding to administer the Healthy Communities Program through the CDIS. The aim of this program is to reduce the burden of chronic disease and injury in North Carolina. Funding goes out through the LHD AA process (886 Healthy Communities). As part of this AA, LHD’s can choose from a variety of evidence-based and promising strategies focused on Policy, Systems and Environmental (PSE) change. Many of these strategies are supportive of MCHBG priorities including breastfeeding-friendly facilities, opportunities for physical activity, policies and guidelines promoting healthier food options, promoting tobacco-free facilities and programs, and promoting evidence-based injury and violence prevention in communities. One specific example includes the NC Breastfeeding Mother-Baby Friendly Clinic Award. Staff from WCHS and CDIS work together to coordinate and share information across programs to help focus TA and training, reduce duplication of effort and increase outcomes.

 

In FY19, the CDIS’s Community and Clinical Connections for Prevention and Health (CCCPH) Branch received a five-year competitive CDC State Physical Activity and Nutrition (SPAN) Grant. CCCPH’s Physical Activity and Nutrition (PAN) Connections Initiative supports state and local efforts to address physical activity and nutrition, specifically focusing on the following strategies:

• Food Service Guidelines
• Interventions Supportive of Breastfeeding
• Activity-Friendly Routes to Connect Everyday Destinations
• Early Care and Education Nutrition and Physical Activity Standards

 

One NC SPAN Grant activity was the creation of the NC Breastfeeding Advisory Group (BAG) whose purpose is to be a sharing forum for North Carolina breastfeeding stakeholders to explore challenges and opportunities, share expertise, provide guidance and identify potential collaborations to increase breastfeeding among families in North Carolina. The PNC is a member of the group along with staff members from DPH, the NCBC, Mom’s Rising, and the Carolina Global Breastfeeding Institute. The NCDHHS Senior Early Childhood Policy Advisor is also a member.

 

CCCPH is also providing direct technical assistance and support to local community organizations awarded funding through RFA #A359 (PAN Funding). Part of the funding supports the WCHS’s work to increase breastfeeding initiation and duration. Nutrition staff from WCHS and CDIS work together as part of the NC DPH Breastfeeding Coordination Team to coordinate and share information across programs to help focus TA and training, reduce duplication of effort and increase outcomes.

 

LHD maternity clinics provided prenatal care, which is inclusive of breastfeeding promotion, through counseling and education.

 

Care Managers for the CMHRP program assessed each of their patients prenatally and in the postpartum period for breastfeeding support needs and provided on-going education and information during FY20 as part of their care management services. If the patient indicated a need for breastfeeding support at any time, the CMHRP Care Manager made an appropriate referral to the needed support services and documented these findings and interventions in the patient’s Comprehensive Needs Assessment in the Virtual Health documentation record system.

 

 

Healthy Beginnings

 

The Healthy Beginnings program serves women of color to ensure initiation and continuation of prenatal and primary care. The program continued to work with women in the interconception period on reproductive life planning, healthy weight, and referral for ongoing primary care. During FY20, the Healthy Beginnings program served 481 participants. Of the 372 babies who were born, 12.9% were born low birth weight. There was one infant death to a participant in the Healthy Beginnings program during this time period.

 

Healthy Start NC Baby Love Plus

 

The Healthy Start NC Baby Love Plus (BLP) Initiative is a federally supported program funded through MCHB. The aim of this program is to improve birth outcomes and the health of women of childbearing age (15-44 years) through the strengthening of perinatal systems of care, promoting quality services, promoting family resilience, and building community capacity to address perinatal health disparities. In FY20, BLP was focused in four counties with higher infant mortality rates within the state. BLP program services included outreach, health care coordination for women during the preconception, prenatal, and interconception periods, promotion of fatherhood involvement, perinatal depression screening and referral, and health education and training. Over the course of FY20, BLP services were provided to 79 pregnant women, 63 women in the preconception and interconception periods, and 35 infants and children under the age of 18 months. No fathers were enrolled during this time period; however, efforts to improve father enrollment are underway. Approximately 2,900 participants and community members received education on various health topics including healthy weight, importance of prenatal and postpartum care, depression, reproductive life planning, insurance, and the importance of having a medical home.

 

BLP has a strong focus to not only increase initiation of breastfeeding but improve the duration rate of breastfeeding to at least 6 months. BLP staff have close connections with breastfeeding support in the community to assist with this goal. Some BLP staff were trained to provide basic breastfeeding support while encouraged to refer to local professionals to assist participants. In FY20, BLP staff made 22 referrals to local WIC agencies who employ peer counselors for breastfeeding assistance. Unfortunately, none of our participants continued breastfeeding until at least 6 months of age. The BLP Evaluation Team is looking into determining barriers to duration and focusing on involving the program’s Local Action Networks to strategize methods to remove those barriers for program families. Family Care Coordinators and Family Outreach Workers are trained in using Partners for a Healthy Baby, an evidence-based home visiting curriculum specifically tailored to pregnant and postpartum families. This curriculum incorporates the benefits of breastfeeding and the importance of building in support mechanisms throughout a family’s breastfeeding experience. In addition to education provided during home visits, the Family Care Coordinators and Family Outreach Workers hosted group support events to increase awareness and benefits of breastfeeding initiation and duration. During FY20, one of the group support sessions focused on breastfeeding. Ten participants attended.

 

The Fatherhood Services component of BLP provides education, support, and outreach to expectant and parenting fathers and/or male partners, with priority given to those fathers/partners of BLP program participants. Enrollment into the Fatherhood program is primarily achieved through referrals from the Family Care Coordinators and Family Outreach Workers who currently work with mothers enrolled as BLP participants; however, fathers/partners can also be referred by other community partners. Male program participants receive support through home visits or in-community contacts and group sessions as well as information and referrals to resources for health care, job training, education, mental and behavioral health, reproductive health, and transportation. The program also provides educational sessions through evidence-based parenting curricula (24/7 Dad and Doctor Dad) and the Fathering in 15 app designed to equip fathers with self-awareness, compassion, and sense of responsibility. BLP staff are trained in engaging fathers in the breastfeeding decision-making process and offers support tips to fathers as a part of the breastfeeding team. Opportunities for fathers/male partners to interact with children are also provided.

 

Infant Mortality Reduction and Reproductive Life Planning Initiatives

 

An infant mortality reduction initiative included in the 2015 state budget was to re-allocate $1.575 million in Title V funding to be distributed to LHDs with high infant mortality rates to implement evidence-based strategies that are proven to lower infant mortality rates. Counties received funding at three funding levels ranging from $38,500 to $113,750. Each LHD was required to implement or expand at least one evidence-based strategy. The choices of evidence-based strategies in FY20 included: 17P (alpha hydroxy progesterone); Centering Pregnancy; Doula Services Program; Nurse-Family Partnership (NFP) expansion; Reproductive Life Planning (RLP) Services (includes increased access to long acting reversible contraception); Infant Safe Sleep Practices; and Tobacco Cessation and Prevention. Funding was distributed to 22 counties in FY20 with 15 of the sites selecting RLP Services as one of their evidenced-based strategies for implementation.

 

CenteringPregnancy® is an evidenced-based approach to delivering prenatal care in a group setting that has increased in popularity across the state both in LHDs and in private practices. It follows the ACOG traditional course of care averaging 90 minutes to two hours in length that includes educational discussions among participants led by specially trained group facilitators. Women are encouraged to engage in their care by taking an active role during visits. Opportunities to self-document vital signs and weight are just a few of the components that contribute to more meaningful participation and understanding of their care. This helps to promote greater adherence to recommendations given throughout the course of care, attendance to visits, and a more supported, prepared woman. Representatives from the LHDs implementing Centering Pregnancy as well as DPH staff participate in the statewide Centering Consortium. This group continues to provide training, technical assistance, and support for new sites.

 

The Improving Community Outcomes for Maternal and Child Health (ICO4MCH) initiative continued in FY20. After a competitive application process in FY18, funding was re-awarded for two more years (FY19 and FY20) to the initial five grantee LHD sites, increasing coverage from thirteen to fourteen counties. ICO4MCH was a result of new legislation in 2015 allocating $2.5 million in state funding to DPH to implement evidence-based strategies that are proven to lower infant mortality rates, improve birth outcomes, and improve the overall health status of children ages birth to five. ICO4MCH uses a Collective Impact Framework, the principles of Implementation Science, and a Health Equity approach. The evidence-based strategies (EBS) chosen by the project sites to meet the three aims of the initiative included RLP (includes increase access of LARCs), Ten Steps for Successful Breastfeeding, Smoking Cessation and Prevention, Triple P (Positive Parenting Program), Family Connects Home Visiting, and CEASE (Clinical Effort Against Secondhand Smoke Exposure.

 

ICO4MCH’s RLP focus includes encouragement for women and men to reflect on their reproductive intentions and select family planning strategies that work for them. Outreach was conducted and trainings were held to focus on RLP. A total of 186 educational and outreach events were held in FY20 reaching over 6,053 people. In addition, 391 health care providers and staff were trained in RLP, and 3,405 LARCs were provided among 27,028 family planning clients served. ICO4MCH collaborative sites also increased the number of businesses, worksites, schools, and organizations that accommodate breastfeeding women (patrons and employees). In FY20, ICO4MCH sites provided 73 breastfeeding trainings, which reached 623 staff. In addition, ICO4MCH engaged women in discussions about plans to breastfeed during prenatal care visits using patient decision aids. An additional 39 providers in five clinics began using these aids and served 1,591 women in FY20. The COVID-19 pandemic caused grantees to adapt how they were implementing their EBS and doing overall collective impact work. Sites overcame a number of challenges as they continued to provide high quality maternal and child health care and programming.

 

Health Equity

 

As part of the work done by NC’s Social Determinants of Health (SDoH) CoIIN, the collaborative #impactEQUITYNC, made up of members from the WCHS, NC Office of Minority Health and Health Disparities, March of Dimes, and NC Child (a statewide child advocacy organization) was formed. One goal of the collaborative is to develop, test, and disseminate a tool to empower public health agencies and communities to evaluate and proactively address the health implications of state and local policies, practices, and programs. The NC Health Equity Impact Assessment (HEIA) is based on a tool originally developed in Washington state, which uses data and community involvement to address health inequities and facilitate systems change. The HEIA uses data and community involvement to evaluate the impact of public policies, programs, and administrative practices on health inequities in NC and to promote systems change. Along with some pre-work steps of recruiting the right participants and compiling a data profile, there are four steps to the assessment which are done with the implementation team: 1) describe the policy/program 2) analyze and interpret the data profile, 3) identify modifications, and 4) develop a monitoring plan. The WHB has incorporated the use of HEIA into its Perinatal Health Strategic Plan, and the assessment has been adopted by ICO4MCH. During FY20, ICO4MCH grantees completed assessments RLP, breastfeeding, and Family Connects.

 

Another goal of the SDoH CoIIN Team is to develop a racial equity foundational training for all DPH employees, and work on this training continued in FY20. The SDoH CoIIN is co-led by staff members from the WHB and March of Dimes and meets monthly as a large group with additional subcommittee meetings held as necessary. During the report period, NC SDoH CoIIN team members drafted the Advancing Health Equity in North Carolina (AHENC) foundational training. AHENC training modules are presently under review by WCHS leadership. Once finalized and approved, the training will be incorporated into the Learning Management System (LMS) which is NCDHHS’ web-based training platform. The goal is that this will be a required annual training taken by all NCDHHS employees. As a complement to the AHENC training, a debriefing framework consisting of facilitated discussions about training content, available resources, and suggested strategies to connect the training to employee job duties will occur 30-60 days after training roll-out. In addition, the NC SDoH CoIIN co-leads met with internal and external health equity champions to share a status update about the work of the SDoH CoIIN.

 

Center for Maternal and Infant Health

 

The WHB provides funding to the UNC CMIH to implement the statewide 17P program to help women with a history of preterm birth to reduce the risk of reoccurrence. The program focuses on increasing access to this medication for pregnant women in NC who meet the clinical criteria for its use. CMIH, working in partnership with WHB, CCNC, and NC Medicaid, focuses on consumer education, technical assistance to providers and partnering with providers to enhance outreach and education to women of reproductive age. During FY20, CMIH conducted outreach at 11 conferences throughout NC where they provided patient education resources to healthcare providers and community members. CMIH has successfully expanded outreach through social media campaigns for both patients and providers; the campaign ads were viewed by over 220,000 social media users in NC. The 17P project has been able to provide technical assistance to private and public providers throughout the state via phone and email consultation as well as aided agencies ordering 17P patient educational materials.

 

Limited funds are provided to the UNC CMIH to implement the Infant Safe Sleep Campaign. This Campaign addresses infant health by reducing the risk of Sudden Infant Death Syndrome (SIDS) and preventing accidental infant strangulation and asphyxiation deaths. Evidence-based messages focus on infant safe sleep practices such as correct infant positioning and safe sleep environments. Dangers of co-sleeping and exposure to secondhand smoke are addressed as well as the protection offered by breastfeeding. In FY20, CMIH conducted six in-person and one virtual safe sleep trainings and exhibited at 11 conferences and professional events throughout North Carolina. Due to COVID-19 restrictions, four trainings and five exhibiting opportunities were canceled. At the events staff were able to attend, they advertised and provided copies of the literature-informed patient education materials developed in the previous year and available at no cost to NC agencies through the WHB’s publications warehouse. CMIH trained 224North Carolinian healthcare providers through their free, internet-based training resource. Most participants were employed at local health departments and post-training evaluation data showed the training was positively received by participants. The Safe Sleep Campaign continued a robust social media presence engaging with over 109,306 users across multiple social media platforms.

 

Prenatal and Newborn Screening

 

The C&Y Branch administers contracts with UNC-Chapel Hill and Wake Forest University to provide maternal serum prenatal screening in order to detect neural tube defects, Down syndrome, and other chromosomal anomalies in order to improve health outcomes. This screening was provided for 2,784 pregnant women with low-income in FY20.

 

Universal newborn screening genetic services have been available in NC since 1966. In 1991, provision of such services became a legislative mandate with the passage of House Bill 890 "An Act to Establish a Newborn Screening Program." The NC State Laboratory of Public Health (SLPH) began its program screening all infants born in NC for phenylketonuria, then added tests for congenital hypothyroidism and later for galactosemia, congenital adrenal hyperplasia, and hemoglobinopathy disease (e.g., sickle cell). Beginning in July 1997, screening was expanded to include a broader array of metabolic disorders using tandem mass spectrometry technology. Screening for biotinidase deficiency was added in 2004, and screening for Cystic Fibrosis was added in 2009. Legislation was passed in May 2013 requiring newborn screening for critical congenital heart disease (CCHD) using pulse oximetry screening. Screening for Severe Combined Immunodeficiency Disorder (SCID) was added to the panel of screening in 2017. SL 2018-5 amended NCGS 130A-125, which allowed for NBS expansion to include Pompe disease, Mucopolysaccharidosis Type I (MPS I), and X-Linked Adrenoleukodystrophy (X-ALD), and for the Commission for Public Health to “amend the rules as necessary to ensure that each condition listed on the Recommended Uniform Screening Panel…is included in the Newborn Screening Program.”

 

The Newborn Screening (NBS) Follow-Up Team, housed in the C&Y Branch and funded by Title V, ensures that all newborns who screen positive for a particular genetic diagnosis receive timely follow up to definitive diagnosis and are referred to clinical management for their condition. In FY20, the C&Y Branch Follow-Up Team provided services for 810 infants with abnormal NBS results for CH, CAH, galactosemia, biotinidase deficiency, and CF, 112 of whom were confirmed to be affected and are receiving treatment as determined by the appropriate subspecialist. Additionally, active follow-up was provided to 322 out of range SCID results, which identified 2 confirmed cases of SCID, and 15 infants were identified with and treated for other conditions detected by a low T-cell count. With the addition of three NBS follow-up Social Workers, the follow-up team was able to expand to report Unsatisfactory Specimens to the items reported directly to primary care providers, decreasing the number of days to repeat specimen collection. The Newborn Screening Health Educator assisted in the creation and delivery of the electronic Early Hearing Detection and Intervention (EHDI) newsletter and 2019 EHDI Annual Report to stakeholders. In honor of NC EHDI’s twentieth year celebration, the educator created an infographic highlighting accomplishments. Prior to COVID-19, the educator was planning a video project to capture twenty stories from families that have benefited from the NC EHDI program since its launch. The Newborn Screening Health Educator also served as a member of the Opioid Action Team. Ongoing projects include the development of education materials for the new conditions added to the NBS panel.

 

The NBS Unit at NCSLPH has steadily been making continuous improvements to enhance the NBS Program throughout NC. The first major accomplishment that Cystic Fibrosis mutational analysis was validated and brought back to the NC NBS Molecular Lab after being outsourced due to the previous vendor’s inability to continue their service. This greatly reduced the turnaround time for cystic fibrosis screening in NC. Beginning in January of 2020, CF DNA testing includes a panel of 139 mutations for all specimens with elevated immunoreactive trypsinogen values. The NBS Follow-Up Team continued to collaborate with CF Center staff and local providers to facilitate prompt and successful sweat tests and provided education to providers regarding the CF screening process and follow-up recommendations. Additionally, the NBS Follow-Up Team worked with the CF Centers to accommodate sweat testing access and availability which was temporarily altered in response to the COVID-19 pandemic.

 

In FY20, the NBS Unit worked diligently to lay the groundwork for the transition of MS/MS testing for metabolic disorders from a derivatized Lab Developed Test (LDT) to an FDA cleared non-derivatized assay, NeoBase 2. NeoBase 2 allows for the detection of X-Linked Adrenoleukodystrophy (X-ALD) marker, C26:0-LPC. Preparation for this switch required an extensive review of analyte algorithms that had been historically implemented for reporting. Based on updated Clinical Laboratory Standards Institute (CLSI) guidelines, analyte combinations for 40+ metabolic disorders were reviewed with Subject Matter Experts and updated to be in accordance with the most recent guidance for Newborn Screening by Tandem Mass Spectrometry. These updates created the foundation for a comprehensive enhancement of the NBS MS/MS Lab and improvement to the NBS report. Further, the NBS MS/MS Lab space underwent renovation to install a new Fume Hood and desk space for additional laboratory method preparation and staffing to accommodate testing for X-ALD. To date, the new method has been validated and implemented. The validation included a first tier test for X-ALD that will roll-out at a later date due to the need of a second-tier testing strategy. New instrumentation has been acquired and performance qualifications for the second tier CDC assay are underway.

 

The infrastructure to onboard screening for Spinal Muscular Atrophy (SMA) was also created in FY20. This included the hiring of testing personnel to perform testing for a multiplexed method that detects markers for Severe Combined Immunodeficiency (SCID) and SMA. A Molecular Public Health Scientist was among the increased staffing. This position is responsible for validating new laboratory methods and providing training in the Molecular Lab.

 

Lastly, the procurement of an FDA-cleared assays for 1st-tier screening of MPS-1 and Pompe and the outsourcing of a 2nd-tier test for each of these conditions, was impacted by the COVID-19 pandemic. However, a Request for Proposal (RFP # 30-21140-DPH) was issued and has closed, and proposals are currently in the review process. The SLPH plans implementation of MPS-1 and Pompe screening in early 2022.

 

The C&Y Branch maintains a contract with UNC-Chapel Hill for follow-up and management of infants identified by MS/MS. Discussions are in progress for the final phases of implementing universal NBS for X-ALD and MPS1 with follow-up coordination, which is in addition to the existing MS/MS contract in FY20. The UNC Newborn Metabolic Screening Program provides comprehensive coordination and care through a multi-disciplinary team available 24/7. The team at UNC offers prompt consultation and management for newborns, infants, and children who are at high-risk for metabolic decompensation and who require immediate care to prevent long-term consequences – the primary goal for all NBS programs. Newborns with potentially life-threatening metabolic disorders are typically seen within 24 hours by the metabolic consultant. UNC confirms the diagnosis by second-tier metabolic testing, educates families about the metabolic disorder, initiates appropriate dietary changes using special metabolic formulas, and discusses long-term management and follow-up.

They provide all the necessary long-term management and follow up for all disorders identified through the newborn screening. UNC also provides consultation for interpretation of all abnormal MS/MS newborn screening results sent by the SLPH to primary care physicians and arranges for follow-up testing and evaluation of these infants six days a week.

 

In collaboration with RTI International and UNC-Chapel Hill, the pilot study screening for X-ALD using an HPLC/MS/MS methodology was completed through which three babies with X-ALD were identified and treated. Pilot studies in NC for MPS1 and X-ALD suggest a detection rate of 1:4,166 cases.

 

UNC is also part of an integral team involved in discussions to provide care for newborns who will be identified with the potential implementation of newborn screening for spinal muscular atrophy (SMA) in NC. UNC has a multidisciplinary team that includes a MD geneticist, genetic counselors, neurologists, and social worker. They have been involved with a pilot study through RTI and will be well equipped to do second tier testing to confirm the diagnosis and offer state of the art current treatment options.

 

During FY20, there were 2,728 out of range MS/MS NBS, of which 466 required complex actions. There were 29 newborn diagnoses made during that period. In addition to the new cases reported above, metabolic dietitians have documented close to 5,885 contacts with the existing patient cohort outside of clinic visits to help and coordinate the management of their inborn error of metabolism (IEM).

 

The NC Birth Defects Monitoring Program (NCBDMP) continued with its case reviews of CCHD identified through the system and compared them with the screening results to determine if there were false positive or false negative results. The NCBDMP also periodically reviewed the CCHD database for reports of screening. As a part of the ongoing follow-up, a weakness was identified in that many facilities were either not reporting completely or accurately. BDMP staff followed up with facilities when possible to improve reporting.

 

NC Sickle Cell Program

 

The NC Sickle Cell Syndrome Program (NCSCSP) provided testing, counseling, care coordination and education to individuals and families living with sickle cell disease during FY20. Funded primarily with state and Medicaid resources, services were provided to individuals with sickle cell disease throughout the life cycle. Services are provided using a team model approach that includes DPH Sickle Cell Educator Counselors (SC ECs), a contracted community- based organization and six major medical centers. The state funded medical centers focus on specialized clinical care for clients with sickle cell disease. In addition, the NCSCSP provides counseling and educational services to individuals with trait and therefore at risk for having children with sickle cell disease.

 

 During FY20, the Sickle Cell Education Consultant, in collaboration with the Sickle Cell Trait Counseling Work Group formed in FY17, developed a guidance document (Protocol for Local Health Departments for Education, Screening and Trait Counseling) for sickle cell services focusing on screening and counseling for LHDs. This protocol details how LHDs can support the work of SC ECs throughout the state in an effort to educate parents of newborns identified with sickle cell trait or related trait through the newborn screening program as well as individuals screened through the LHDs and identified with trait.

 

SC ECs participated in five trainings during FY20. A community engagement forum was held to provide sickle cell education to local agencies, leaders and health professionals (non-profits, sororities/fraternities, medical providers, faith-based organizations) in select southeastern North Carolina counties. This event was sponsored by Piedmont Health Services and Sickle Cell Agency that serves 19 counties in the state. In addition, a Sickle Cell care coordination follow up training was conducted to review the Client Strengths Needs Assessment (CSNA) that includes evidence-based tools such as the CAGE-AD (substance use screening tool) and the Personal Health Questionnaire 9 (PHQ-9-depression screening). The Sickle Cell CBO partner hosted an “Advocation” training to empower clients with sickle cell disease to become more knowledgeable about and offer strategies to help them successfully navigate the health care delivery system. The SC Data Manager conducted a training on the Community Care of North Carolina’s (CCNC) Virtual Health Provider portal, an online tool used to pull down referral information and follow up on sickle cell clients seen in hospital emergency departments and referred to the NCSCSP by CCNC care managers. Also, a training was held for SC Educator Counselors and medical center partners who provide clinical care for sickle cell clients during the COVID-19 pandemic. The training focused on providing comprehensive care to clients using telemedicine, virtual technology and telephone visits. In addition, the Sickle Cell Data Manager continued to provide technical assistance and support to staff on the WCS-Web database (data system for newborn hearing screening and sickle cell programs).

 

SC ECs provided care coordination services including genetic counseling and education to 113 newborns identified with sickle cell disease in FY20. These newborns were linked to pediatricians for completion of confirmatory testing for sickle cell disease and receipt of well care. Newborns were also referred to hematologists for specialized care and treatment of sickle cell disease including prescribing penicillin prophylaxis to prevent streptococcus pneumoniae infection which could lead to early death in young children.

 

Staff at the six comprehensive sickle cell medical centers continued required data entry in the WCS-Web database to document the total number of clients served and the number and types of services provided to each client. Initial training and technical assistance were provided to medical center staff in FY20 to ensure understanding of data entry requirements, especially for newly hired staff, and to promote timely, accurate submission of sickle cell client information. Enhancements and modifications continued to be made to the WCS-Web database in FY20.

 

Early Hearing Detection and Intervention Program

 

The Early Hearing Detection and Intervention (EHDI) program is primarily funded through other federal grants but housed in the C&Y Branch. All 86 hospitals/birthing facilities in NC provide newborn hearing screening. Newborn hearing screening data are collected through the state's web-based data tracking and surveillance system for newborn hearing screening, WCSWeb Hearing Link. WCSWeb Hearing Link is used to provide data to birthing facilities, audiologists, and interventionists for compliance with reporting requirements and the number of infants meeting EHDI 1-3-6 (screen by one month of age, diagnosis by three months of age, enrollment in intervention by six months of age) goals. The EHDI data system will continue to be enhanced with a long-term goal of integration with other Health Information Technology (HIT) or electronic medical record systems. The EHDI program works to empower and utilize families as partners in the development or improvement of a statewide family support system designed to address the needs of families of newborns and infants diagnosed as deaf or hard of hearing (D/HH).

 

EHDI has a parent consultant on staff that acts as a liaison with families across the state. In FY20, sixty parents participated in a Parents as Collaborative Leaders: Improving Outcomes for Children with Disabilities (PACL) Training. Parents completing PACL trainings are invited to participate in EHDI activities. During FY20, parents of children who are D/HH have:1) co-chaired and participated on the EHDI Advisory Committee; 2) presented in-person PACL trainings at family support programs and virtual during the pandemic; 3) co-presented with EHDI staff at the 2020 National EHDI conference; 4) participated on the Pediatric Audiologist and Early Interventionist Sensitivity Training Development Committees; 5) participated on numerous committees/workgroups (Common Ground, CMV, Parent-Professional Collaborative, Deaf Mentor, C&Y Branch Family Partner and e-Update); 6) developed a parent support team; 7) acted as webmaster for the HitchUp.org family support locator website; 8) reviewed new program materials; and, 9) shared their hearing loss journey for inclusion in trainings.

 

EHDI Regional Consultants and administrative staff provide tracking and surveillance through the three stages of the EHDI process (screening/re-screening, diagnostic evaluation, and enrollment in early intervention) for all children born in NC. Operational support for this team is through Title V. The EHDI Regional Consultants provide ongoing technical assistance, consultation, education, and support to birthing facilities, physicians, audiologists, interventionists, and families.

 

The EHDI staff members continued to collaborate with the DPH WHB to disseminate EHDI educational materials. The NC-EHDI Program Materials Order Form continues to be shared with stakeholders so they can easily request materials directly from the storage warehouse. These new dissemination strategies have greatly increased the amount of program materials being shared with our partners.

 

EHDI also continued to collaborate with C&Y program partners including Maternal, Infant and Early Childhood Home Visiting (MIECHV), Minority Outreach Coordinator, CYSHCN Helpline Coordinator and the C&Y PMC) to share EHDI resources at statewide meetings, conference and events, as well as the NC Infant-Toddler Program.

 

In 2019, WCSWeb Hearing Link collected hearing screening data on a total of 120,638 live births. A total of 119,709 (99.2% of live births) were screened for hearing, with 117,290 (97.2% of live births) screened by 1 month of age. One SPM was selected to identify progress to address the WCHS’s priority need to “increase the number of newborns screened for genetic and hearing disorders and prevent birth defects.” SPM #1 is the percentage of infants with confirmed hearing loss who are enrolled for intervention services no later than age 6 months. In 2013, this percentage was 51.7 and dropped to 41.1% in 2015, but has risen back to 43.6% in 2019. Part of the reason for the earlier decrease can be explained by a change in how children are enrolled in the Infant Toddler Program (ITP). Prior to August 2012, children with hearing loss could receive services specific to their hearing loss at the CDSAs without being enrolled in ITP, but now they must be enrolled in ITP to receive hearing services which has decreased enrollment. Efforts to modify this change in enrollment practices are ongoing. The CDC also clarified the definition of “enrolled” to be the date of the signed Individualized Family Service Plan (IFSP). The EHDI program’s eleven regional audiology and speech language consultants tracked all 4,643 infants who did not pass their initial hearing screening identified in 2019. The regional consultants partnered with birthing facilities, pediatric audiologists, medical home providers, early intervention providers, LHDs, parents, and other stakeholders to ensure that infants received the appropriate follow-up care they needed in a timely manner and aligned with the Joint Committee on Infant Hearing (JCIH) best practice guidelines.