Perinatal/Infant Health Domain NPM and SPM Selection

As part of the 2015 MCH Needs Assessment process, the following needs were identified: 1) too few Wisconsin infants receive breast milk and are breastfed exclusively through 6 months, 2) too many babies in Wisconsin are not put to sleep alone, on their back, and in a crib, putting them at risk of adverse health outcomes, and 3) too many Wisconsin women are not screened for depression in the perinatal period. The Wisconsin Title V Program selected National Performance Measures related to breastfeeding and safe sleep and a State Performance Measure to address perinatal depression screening.

Perinatal/Infant Health Annual Report

National Performance Measure 04: A) Percent of infants who are ever breastfed and B) Percent of infants breastfed exclusively throughout six months. (Addresses MCH Priority: Healthy Behaviors)

While overall rates of breastfeeding initiation in Wisconsin are good, breastfeeding initiation is persistently lower among women of color, specifically Black and American Indian women.  

    Table 1: Population and Systems Data. Wisconsin Interactive Statistics on Health, 2017

Infant breastfed at hospital? 2017	Percentage
Overall	81%
White (Non-Hispanic)	86%
Black/African American (Non-Hispanic)	55%
American Indian/Alaska Native (Non-Hispanic)	68%
Hispanic	79%
Laotian or Hmong (Non-Hispanic)	46%
Other (Non-Hispanic)	90%
Two or More Races (Non-Hispanic)	75%

 

 

 

 

 

 

 

 

 

Furthermore, these racial disparities persist in breastfeeding duration.

      Table 2: Wisconsin PRAMS, 2017

Breastfeeding at the time of the survey	Percent
Non-Hispanic White	69%
Non-Hispanic Black	43%
Hispanic	62%
Other race	69%
Total	66%

 

 

 

 

 

Hospitals that follow baby-friendly practices support breastfeeding with evidence-based practices and women report that they received the following breastfeeding-promoting care at their birth hospitals:

Table 3: Wisconsin PRAMS, 2017

PRAMS 2017	Percent of moms reporting hospital practice
Staff provided information on breastfeeding	95%
Baby stayed in mom’s hospital room	90%
Instructed to feed on demand	89%
Skin-to-skin in first hour	88%
Given a breastfeeding hotline phone #	87%
Staff helped with breastfeeding	85%
Breastfed in first hour of life	79%
Baby fed only breastmilk at the hospital	68%

 

 

 

 

 

 

 

 

 

 

 

 

 

 

However, some practices that may discourage breastfeeding are still prevalent in Wisconsin birth hospitals. For example, 28% of 2017 Wisconsin moms reported that they received a gift pack with formula at the hospital, and 50% reported that hospital staff gave their babies pacifiers.

While birth hospitals still have room to improve to support breastfeeding initiation and maintenance, Wisconsin’s Title V programs have focused on community-level strategies for breastfeeding to support breastfeeding duration.

1.The MCH Program has continued to support workplaces to become breastfeeding friendly through contract objectives with local health departments (LHDs) and tribal health agencies.

Out of 34 agencies choosing the breastfeeding objective, 29 local health departments selected to implement system-building activities to support breastfeeding at workplaces. Five of the 29 were tribal agencies selecting this MCH objective to increase breastfeeding rates and decrease disparities within the Native American population.  Approximately 18,243 female employees were reached through activities with workplaces. Close to 1,013 workplaces were contacted about breastfeeding friendly policies and practices and 196 workplaces agreed to participate in improving the breastfeeding environment. Additionally, 36 of the contacted workplaces were already breastfeeding friendly prior to 2018 and 41 workplaces that were not previously breastfeeding friendly completed pre-assessments. Furthermore, 36 workplaces completed staff training, 266 workplaces received educational materials and resources and 39 workplaces completed post-assessments.

Sites identified policies or practices that could be improved to support breastfeeding. Forty-one workplace sites that established a space for expressing milk, 50 sites improved an existing space for expressing milk and 37 sites changed their organizational policies.

Local health departments and tribal agencies worked with community businesses to support breastfeeding policy changes to increase support for breastfeeding employees/customers in the workplace. This work included advocating for breastfeeding employees/customers by creating lactation rooms in addition to workplace policy changes. The LHDs and tribal agencies worked with local coalitions to recruit workplaces and collaborated with human resource departments. Efforts included assisting workplaces in completing a self-assessment of the current breastfeeding environment and providing technical assistance to increase breastfeeding friendly workplaces. Agencies piloted the use of a worksite toolkit created by a local health department. The toolkit includes templates for policy changes, reaching out to businesses, examples of lactation rooms and requirements. This toolkit facilitated local coalitions, LHDs and tribal health agencies in assisting the worksite to implement changes to accommodate breastfeeding employees/customers. In addition to technical assistance, the MCH Program supported worksite efforts by expanding available resources to include; door hangers for lactation rooms, a copy of the United States Breastfeeding Committee (USBC) platform and Breastfeeding Welcome Here window decals.

Wisconsin participated in the Association of State Public Health Nutritionists (ASPHN) Children’s Healthy Weight (CHW) CoIIN at the Intensive Learning Level. The purpose of Wisconsin’s project is to assess and enhance efforts for workplace lactation support for local and tribal health agencies and coalitions so that there is a coordinated and consistent statewide support, promotion, and implementation of workplace lactation strategies. At the state level, a team was assembled with representation from the following: MCH, Chronic Disease, Health Equity, Quality Improvement and CYSHCN-Birth Defects. The team partnered with the Wisconsin Breastfeeding Coalition (WBC) to coordinate the CoIIN efforts.

After surveying for community needs with breastfeeding in the workplace, it was discovered that funding is a barrier. One success of the year was offering mini grants to Wisconsin workplaces.  Ten Wisconsin worksites were awarded a mini grant to implement a workplace breastfeeding policy, create or improve lactation spaces and/or create language specific educational materials. These efforts are highlighted in the CHW CoIIN newsletter and the MCHB workforce development newsletter. https://asphn.org/wp-content/uploads/2019/02/Childrens-Healthy-Weight-CoIIN-September-2018-Newsletter.pdf

The following organizations were awarded mini grants: Kewaunee Public Library, Kewaunee; Princeton School District, Green Lake; YMCA Fox Cities (Neenah-Menasha site); Family Health La Clinica WIC, Wautoma; Authentic Birth Center, Wauwatosa; Ashland Birth Center, Ashland; Hurley School District, Hurley; Holly's Little Red Wagon Childcare, Roberts; YWCA LaCrosse, LaCrosse and LaCrosse County Health Department, LaCrosse.

2. Support childcare sites to become breastfeeding friendly using the Ten Steps to Breastfeeding Child Care Centers Resource Kit.

Seventeen LHDs and tribal agencies selected to work with childcare centers to become breastfeeding friendly. Agencies were required to demonstrate an active local community coalition to support this work with a systems approach. The Ten Steps to Breastfeeding Child Care Centers Resource Kit was adopted from the Baby-Friendly Hospital Initiative and guides these efforts. The Ten Steps include:

1. Designating an individual or group to lead the process
2. Establishing a supportive policy that is known and understood by all staff
3. Establishing a supportive worksite policy for staff members who are breastfeeding
4. Training all staff on breastfeeding promotion and support
5. Creating a culturally appropriate breastfeeding friendly environment
6. Informing expectant and new families and visitors of the Center’s breastfeeding friendly policies
7. Stimulating participatory learning experiences with the children related to breastfeeding
8. Providing a comfortable place for mothers to breastfeed or pump their milk in privacy. Educate families and staff that a mother may breastfeed her child wherever they have a legal right to be
9. Establishing and maintaining connections with your local breastfeeding coalition or other community resources
10. Maintaining an updated resource file of community breastfeeding services and resources in an accessible area for families

 

Agencies used the Ten Steps to Breastfeeding Friendly Child Care Centers toolkit to guide their work with local coalitions and Child Care Resource & Referral (CCR&R) agencies. LHDs and tribal health agencies collaborate with providers to learn how to improve their practices, policies, and child care environments to better support nursing moms. Sites conducted assessments, created action plans, and received technical assistance to make needed improvements. After the agencies completed the 10 Steps, providers were awarded and recognized as “Breastfeeding Friendly.” The MCH Program and Wisconsin Breastfeeding Coalition (WBC) funded Wood County Health Department to house training modules that support the advancement through the steps. These modules guided the LHDs, tribal health agencies, and local coalitions in working with childcare centers. They were translated into Spanish and are now available online as well. https://www.wibreastfeeding.com/wi-initiatives/breastfeeding-friendly-childcare-project/breastfeeding-friendly-child-care-online-training/

Approximately 1,668 children were reached through activities with childcare centers, 99 childcare centers were contacted about breastfeeding friendly policies and practices and 57 childcare sites agreed to participate in improving the breastfeeding environment. Furthermore, 33 childcare sites were already breastfeeding friendly prior to 2018, 18 sites that were not previously breastfeeding friendly completed pre-assessments and 33 childcare centers completed staff training. Moreover, 62 childcare sites received educational materials and resources and 32 sites completed post-assessments.

Childcare sites identified policies or practices that could be improved to support breastfeeding: 10 childcare sites established a space for expressing milk, 12 sites improved an existing space for expressing milk and 13 sites changed their organizational policies.

The MCH Program and WBC continue to collaborate with the Department of Public Instruction (DPI) to promote breastfeeding within childcare centers. DPI administers YoungStar, which is Wisconsin’s child care quality rating and improvement system that drives quality improvement in childcare throughout the state of Wisconsin by:

• Helping providers who want to improve the quality of their care.
• Creating financial incentives that encourage providers to deliver better services to children.
• Giving parents the meaningful information they need to make informed child care decisions for their children—at home and away from home.
• Supporting ongoing child care quality improvement by linking higher quality care to higher payments through the Wisconsin Shares Program.

 

Becoming a breastfeeding friendly childcare center is linked to a YoungStar point. This collaboration enhanced the capacity and success for the LHDs, tribal health agencies and local coalitions. Ten sites became newly certified as breastfeeding friendly and 24 childcare sites received re-certification of breastfeeding friendly status. Staff from 21 childcare sites received Continuing Education Units for their involvement with the Title V program and 2 childcare sites used the Title V activities to get YoungStar credits.

The Chronic Disease Prevention Program partner presented at the American Public Health Association Annual Meeting. The poster was titled: “Breastfeeding support in the childcare setting: A statewide collaborative initiative” and highlighted how the childcare initiative (including training, resources, and technical assistance to ECE providers) is improving practices and policies related to breastfeeding and infant feeding in the ECE setting. We showed significant increases in Nutrition and Physical Activities Self-Assessment for Childcare Centers (Go NAP SACC) scores from pre to post intervention. (See Fig 1).

Figure 1: Go NAPSACC Pre and Post Intervention Scores, 2018

3. Establish a statewide breastfeeding Learning Community for stakeholders, including funded MCH partners, the Wisconsin Breastfeeding Coalition, Chronic Disease Prevention Unit, and WIC.

To support local agencies implementing MCH objectives to promote breastfeeding friendly worksites and childcare sites, four Learning Community calls were conducted. Each Learning Community provided opportunities for networking. Topics of discussion included resources, tips to overcome barriers, training opportunities, sharing success stories and updates related to the REDCap reporting system. MCH staff provided technical assistance to LHDs and tribal health agencies as requested throughout the year. Collaboration with programs regarding safe sleep, smoking cessation during the perinatal period, and second/third hand exposure has been established and will continue.

During one of the Learning Community calls, a Public Health Madison Dane County (PHMDC) shared their efforts with health equity and breastfeeding. PHMDC has focused on breastfeeding with a health equity approach. PHMDC sub-contracted with three community-based organizations to provide doula and lactation support; Centro Hispano, Harambee Village and the African American Breastfeeding Alliance (AABA). Three full scholarships and three partial scholarships were provided for community wellness workers from Centro Hispano to attend a one-week Lactation Counselor Training course and sit for the Certification Lactation Consultant exam. AABA and Harambee Village provided breastfeeding services to 522 families. Harambee Village also provided doula services to 27 families. Of these 27 families, 26 initiated breastfeeding. AABA supported 43 breastfeeding clients.

The agencies participated in a Call to Action to Support Black Breastfeeding and Birthing Families: continuous engagement project with UW Health and Meriter Unity Point Health to improve breastfeeding and birthing policies, care and outcomes for black families in Dane County.  Notable successes from this effort include:

• All Black women birthing at Meriter will receive a consultation from a lactation consultant immediately after birth starting in 2019.

• The Meriter NICU now provides donor breastmilk to infants of all gestational ages as a standard of care, not just those under 35 weeks. Donor milk for the normal newborn population will be implemented in the Birthing Center in April 2019.

•A recipient of a Meriter Foundation Research Grant in partnership with Dr. Ryan McAdams (Neonatology Division Chief at UW School of Medicine and Public Health, Pediatrics Department) will pilot a Pregnancy and Breastfeeding support program in 2019 to increase Black breastfeeding rates upon discharge from Meriter’s Birthing Center.

These collaborative efforts have had a positive impact on the mothers and babies in the Dane County community.

 

4. Collaboration with WIC to promote breastfeeding among CYSHCN through the Nourishing Special Needs (NSN) Project was established.

The Nourishing Special Needs Network (NSNN) improves access to nutrition services and support for infants and children with special needs enrolled in the Wisconsin Women, Infants, and Children (WIC) Program by:

• Supporting breastfeeding education of individuals with disabilities (parents)
• Supporting the expansion of disability and health training opportunities for WIC nutritionists and other health care professionals.

 

The collaboration includes training, data collection, targeted questionnaires, referral documents, and a toolkit to help WIC nutritionists and participants with special health care needs, receive information, effective referrals, and services in a timely manner, including breastfeeding specialty education support for infants born with birth defects. The WIC Toolkit is continually updated with new resources and can be accessed at; https://wic.waisman.wisc.edu/ . The Statewide NSNN CYSHCN webinars can be accessed at:  https://wic.waisman.wisc.edu/training-resources/. The NSNN Nutrition Focus Discussions can be accessed at: https://wic.waisman.wisc.edu/nsnn-meeting-archive/.

The following breastfeeding trainings were offered through the WIC/CYSHCN-Birth Defects Statewide Webinars:

• Breastfeeding Special Needs Infants
• Feeding Infants with Clefts-video
• Feeding Infants with Clefts-handout
• WIC Case Presentation, Breastfeeding Infants with Special Needs

 

See Birth Defects Prevention and Surveillance for more information on the NSNN.

NSNN team members were active participants on ASPHN CHW CoIIN core team. The team’s participation brought knowledge of health disparities related to birth defects and special needs to the core team.

5. The MCH Program also collaborates with the Wisconsin Maternal, Infant, and Early Child Home Visiting (MIECHV) Program, known as the Family Foundations Home Visiting (FFHV) to promote breastfeeding.

The MIECHV Performance and Systems Outcomes Measure is the percent of infants (among mothers who enroll prenatally) who were breastfed any amount at six months of age. In 2017, 11 home visiting agencies participated in the CoIIN project to increase breastfeeding rates. The mission of the home visiting CoIIN Phase II was to dramatically increase the percentage of mothers that exclusively breastfeed their infants until they are three and six months of age over the period of the Home Visiting CoIIN (11 months) by improving policy and practices that: 1) address critical windows for breastfeeding decision-making; 2) increase home visitors’ knowledge and comfort providing breastfeeding support during home visits; 3) ensure seamless linkages for mothers and families to access and engage in peer and community breastfeeding supports; and 4) collect data that informs best practice and rapid improvement.  This partnership continued into 2018 by providing technical assistance related to breastfeeding throughout the home visiting agencies to sustain their breastfeeding efforts.

The Department of Children and Families’ (DCF) MIECHV Program staff participate in quarterly MCH Team Meetings, Learning Communities and the Leading Together initiative supporting family engagement. The MCH Program has representation at monthly Home Visiting Project Team Meetings and the Program Evaluation Work Group. The Home Visiting and MCH programs have collaborated on professional development opportunities and quality improvement initiatives in these areas, and assure data coordination.

The promotion of human milk for 6 months postpartum is communicated by home visitors through program model information and community partners. Many local implementing agencies (LIA) that provide home visiting programs have at least one home visitor trained as certified lactation consultant (CLC) that provide informational tools. Home visitors use these tools to work with families to develop individual infant through childhood eating plans. These plans support parental understanding of optimal infant through childhood growth and development. The LIA have varying partnerships at both state and local levels depending on the location, such as WIC at the state level and La Leche League at the local level that supports clients to initiate and continue breastfeeding. During 2018, 245 children in Wisconsin’s Home Visiting Program reached age 6 months. Home visitors completed a 6-month assessment with 208 of the 245 children. Of the 208 children, 30% were reported as being breastfed at age 6 months.

National Performance Measure 05: Percent of infants placed to sleep on their backs. (Addresses MCH Priority: Safety and Injury Prevention)

Three strategies were implemented at the local level to promote safe sleep:

 

1. Local health departments and tribal health agencies will coordinate and provide educational sessions to implement safe sleep practices with community groups using American Academy of Pediatrics (AAP) guidelines for common messaging. In 2018, 13 local health departments and 4 tribal health agencies implemented this strategy. Educational sessions were held using AAP guidelines for common messaging with community groups including parent or family organizations, home visiting agencies, churches, and businesses, which included conversational approaches on safe sleep with an emphasis on diverse families.  This year, agencies have expanded their reach to include providing information and education to Emergency Medical Services providers (EMS), HeadStart & Early HeadStart, Social Services, law enforcement, libraries, high school consumer education classes, Prenatal Care Coordination (PNCC) clients at several points of pregnancy, childhood education classes at technical colleges, crisis pregnancy centers, family resource centers, health fairs, and community baby shower events.  A local health department created and promoted a safe sleep video that has been incorporated into community education events.  To date, 3 other agencies have reached out to use and adapt the safe sleep video for use in their own jurisdictions (http://www.raisegreatkids.org/be-a-superhero/safe-sleep/).

 

The local health departments and tribal health agencies reported that having established and trusting relationships with community coalitions and organizations have facilitated the cooperative efforts to network and implement valuable services to infants and families. These partnerships have played a major role in the success of this strategy. Agencies have also reported that having more interactive and engaging informational/educational sessions has led to a greater impact in the community. Unique examples of this include holding classes that reach a demographic of participants who were first time parents of color, a population disproportionally impacted by infant mortality in Wisconsin.  A mother shared her personal story of the loss of her infant who died co-sleeping.  The mother stated, “I wish I had this information back then, my baby’s outcome would have been different.”  This personalization and human connection of the learning process invites all to analyze their own experiences.  A tribal Health & Wellness Center utilized crib displays showing what a safe sleep environment looks like, participants were then able to demonstrate how to create a safe sleep environment in their homes.  During a follow up visit, a participant described how she had corrected an unsafe sleep environment of another family member.  This participant not only learned Safe Sleep techniques but felt empowered and so strongly about them that she was able to teach another family member about what she had learned.  Other facilitators to the implementation of this strategy included: tools and resources representing culturally sensitive materials available from the Healthy Native Babies Project from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), National Institute of Children’s Health Quality (NICHQ), Children’s Health Alliance of Wisconsin (CHAW), the Infant Mortality CoIIN initiative addressing safe sleep, CDC and AAP materials, support and information from quarterly Learning Community calls.

 

2. The MCH program also funded local health departments and tribal health agencies to coordinate and provide trainings to implement safe sleep practices with child care providers, using common messaging. Eight local health departments selected to focus their MCH funded activities on this strategy. Agencies collaborated with DHS and Children’s Health Alliance of Wisconsin utilizing tools and resources to promote and implement safe sleep. Participating local health agencies worked with regional Child Care Resource and Referral (CCR&R) agencies to support a coordinated effort to achieve safe sleep practices with child care settings using common messaging. A critical factor that contributed to the success of this strategy was that CCR&R offered 1.5 Continuing Education Units (CEU’s) to childcare providers. Other facilitators contributing to the implementation of this strategy include: having an established trusting relationship with childcare sites along with an in-person connection, having available toolkits, resources, templates and the Sleep Baby Safe video training modules (https://www.chawisconsin.org/initiatives/injury-prevention-death-review/sleep-baby-safe/). Several barriers in implementing this strategy included: difficulty in reaching out to unlicensed childcare providers, childcare providers not responding to mass emailing, limited time for full presentation (90 minutes), and lastly, staff turnover at LHDs, tribal health agencies and childcare sites. This year, there was continued collaboration with agencies working on safe sleep and smoking cessation during the perinatal period and second/third hand exposure to smoke. 

 

Additionally, collaboration has been strengthened between Safe Sleep, Smoking and Breastfeeding to promote consistent messaging into safe sleep conversations.  Quarterly meetings have been hosted with WIC, safe sleep, breastfeeding and smoking NPM lead team, along with representation from the Wisconsin Chapter of the American Academy of Pediatrics and CHAW to ensure a consistent message is being conveyed throughout all information, educational materials and resources.

 

3. A third strategy for local health departments and tribal health agencies is to promote the use of safe sleep policies and procedures developed for hospitals and health systems. This year three local health departments selected this strategy. A survey of Safe Sleep Practices across Wisconsin Maternity Facilities was conducted. Conclusions revealed that of the 27 hospitals surveyed, most facilities have safe sleep policies in place but are incomplete with only 30% of the participants reporting that all AAP recommendations are being used.  Gaps in hospital policy, provider training— particularly around health disparities, and parent education were areas identified for improvement.  Approximately 90% of these hospitals are interested in implementing a crib audit tool.  We have begun working with the Wisconsin Association of Perinatal Care (WAPC) to develop a webinar addressing safe sleep within hospitals/health systems from a policy level.

The local health departments reported that having established, trusted relationships along with identifying a champion within the hospital or health system has been critical to the success of this strategy. This strategy presented several barriers which included: the time to develop and implement a policy, limited time for the full presentation (90 minutes), department manager buy‐in and staff turnover.

 

The safe sleep strategies with local health departments and tribal health agencies resulted in contacts to 243 organizations (29% community groups, 39% child care sites, 7% home visiting sites, 7% hospital and health systems, and other 19%). Nine hospitals received and utilized safe sleep toolkits; 6 made safe sleep policy changes; 122 partnering child care sites reported implementing a safe sleep policy; and 516 childcare, community and health care sites received training, educational materials and toolkits to support safe sleep. Across these sites, 5,751 staff members received training or education. Participating hospitals reached about 82 families who gave birth at their facilities, participating childcare sites served 1,792 infants, and participating community sites served 1,541 pregnant women, for a total of 9,167 families reached.

 

The following PRAMS data for reporting year 2017 indicates there remains a prevalence of unsafe sleep practices that demonstrate a need to expand education and explore what beliefs and barriers prevent families from following safe sleep practices.  We have implemented and promoted a conversational approach with families to uncover the reasons behind unsafe sleep practices and guide additional education and problem solving.  The proportion of Wisconsin infants usually placed to sleep on their backs has remained stable over the last 6 years (85% in 2012 to about 86% in 2017).  In 2017, only 65% of Wisconsin infants always slept alone in their own crib or bed, and about 15% of mothers reported currently smoking in the postpartum period.  Almost half (46%) of babies were put to bed with a blanket and 16% slept with bumper pads.  Additionally, about 52% of babies often slept in a car seat or swing.  Among infants who ever sleep in their own bed or crib, 72% of them have their bed or crib in the same room as their mother.  About 66% of Wisconsin mothers were still breastfeeding at the time of the PRAMS survey (2 to 6 months postpartum), see Fig. 2.

 

Figure 2: Wisconsin PRAMS Provider Education and Self-Reported Safe Sleep Practice, 2017

Approximately 96% of new mothers in 2017 reported that a provider talked with them about laying their baby on their back to sleep, 91% reported having conversations with a provider about placing baby to sleep in a crib, bassinet, or play yard, 47% reported receiving a recommendation to have baby sleep in the same room as mom, and 90% reported receiving counseling on the objects that should and should not be in a baby’s sleep environment. Refer to graph above.

 

Among other factors that could affect a baby’s sleep environment, 3% of mothers reported experiencing homelessness in the year before the baby’s birth.

 

CHAW, created by Wisconsin’s MCH Program more than 20 years ago and housed at Children’s Hospital of Wisconsin, Milwaukee is the statewide organization contracted 4. to provide technical assistance to statewide partners and MCH‐funded local agencies working on safe sleep. CHAW has developed the Sleep Baby Safe curriculum for home visitors, child care providers and hospitals that promote a consistent, clear and concise message on safe sleep. The Sleep Baby Safe curriculum, resources, and tools are located on the CHAW website ( strategy 2) . The use of these tools and resources also enhanced conversations with families when delivering safe sleep education.

 

5. CHAW coordinated and provided trainings to implement safe sleep practices with home visitors and other community partners as a strategy to address the Infant Mortality CoIIN initiative as well as MCH and MIECHV measures related to safe sleep.  Department of Health Services (DHS), Department of Children & Families (DCF), CHAW and UW Milwaukee staff have been involved in ongoing quality improvement efforts.  Currently, we are collaborating with the Family Foundations Home Visiting state team to provide a change package from which participating home visiting projects can choose to test.  Home visiting programs started working with families and community partners to increase the use of safe sleep practices over 18 months, beginning May 2018. Primary drivers include: developing and refining policy and practices that lead to supportive policies for safe sleep practices; caregivers with knowledge, skills, and self-efficacy to practice safe sleep, competent and skilled workforce to support safe sleep, and strong community linkages to support safe sleep. Since Home Visiting agencies are involved in client interaction from prenatal, post-partum to 5 years old (depending on program model); home visitors have ample opportunity to communicate with participants about safe sleep. The four home visiting models used in Wisconsin vary in types of informational material used; however, the messaging remains the same: Alone, on Back, in Crib and Smoke Free.  Thirteen local agencies have been participating in the Continuous Quality Improvement (CQI) Learning Collaborative.  This year, home visitors assessed the sleep practices of over 800 families with a child less than 1 year of age.  Forty percent of caregivers reported that their infants were always placed to sleep with only a fitted crib sheet or nothing, 71% of infants sleep in a crib, bassinet or Pack ‘n Play on their backs, 35% infants sleep alone and 72% of infants always sleep on their back.

 

   

               Figure 3: FFHV Infant Safe Sleep QI Results, 2018

 

Wisconsin’s MCH Program is continuing to integrate the work of the Infant Mortality CoIIN initiative into its programs. The need for common messaging for all providers emerged from the lessons learned and knowledge gained during the CoIIN. The safe sleep team partnered with contracted local health, tribal health agencies and funded MCH partners to provide these MCH services as an ongoing 6. statewide safe sleep Learning Community. Learning Communities brought together partners working on safe sleep to support existing work and innovative approaches to assist in building capacity to implement safe sleep practices. CHAW has convened quarterly Learning Communities. Throughout the contract year, a total of 1,541 pregnant women and 1,792 infants were reached by an intervention, and 5,751individuals received training or education. Agencies that participated in the Learning Communities appreciated having a forum to network with agencies/organizations across the state. Participants reported the Learning Community facilitated their work leading to successful implementation of safe sleep practices.

 

Lastly, through its MCH contract,  7. CHAW ensured all Wisconsin counties participating in a CDR team follow the Keeping Kids Alive in Wisconsin model and that prevention recommendations are implemented, CHAW also promoted and supported the use of a standardized data system for all local CDR/FIMR teams.   Three local health departments expressed interest in implementing a CDR team in their county, with one county successfully implementing a CDR team.  The 2 remaining counties will complete the implementation process in early 2019.  CHAW is currently in process of revising the Keeping Kids Alive (KKA) Guidebook, this work will continue in 2019.  KKA pages on CHAW’s website have been completed with added prevention recommendations page featuring local, state and national resources.  The MCH Program has partnered with CHAW since 2013 on the CDC Sudden Unexpected Infant Death (SUID) and Sudden Death in the Young (SDY) Registry Grant.  This grant ensures continued surveillance of all sleep related deaths in Wisconsin and provides evidence of effectiveness of programmatic efforts.  The current report will be released in January 2019 and will reflect 2016 data.  The report can be found at: https://www.chawisconsin.org/the-alliance-releases-new-report-on-sudden-unexpected-infant-deaths/.

 

State Performance Measure 02: Percent of women receiving perinatal depression screening. (Addresses MCH Priority: Mental Health Factors and Healthy Relationships)

 

The state performance measure for perinatal depression screening is informed by data from the 2017 Pregnancy Risk Assessment Monitoring System (PRAMS).  About 17% of Wisconsin women who gave birth in 2017 had experienced depression prior to their 2017 pregnancy and 14% reported experiencing depression during their pregnancy. About 12% of postpartum women reported experiencing at least one symptom of depression at the time of the survey (2-6 months postpartum).  An estimated 59% of women who had at least one health care visit in the year before becoming pregnancy reported being screened for depression; 85% reported being screened during prenatal care and 92% of those who had a postpartum visit reported being screened postpartum for depression. Overall, about 95% of women who gave birth in 2017 were screened either during prenatal care or a postpartum visit. Among those who did not report being screened for depression in the peripartum period, 9% reported postpartum depression symptoms at the time of the survey.

 

Stress is a risk factor for perinatal depression. Wisconsin moms who indicated feeling symptoms of perinatal depression were 1.6 times more likely to have had three or more stressful life events in the 12 months before their baby was born compared to moms who did not experience symptoms of perinatal depression. These experiences include, but are not limited to the following:

 

• 15% of Wisconsin moms indicated having problems in their relationship with their spouse or partner
• 15% of Wisconsin moms had trouble paying the rent, mortgage, and other bills
• 9% of Wisconsin moms lost their job and 9% of their husbands or partners lost their job
• 30% moved
• 18% experienced the death of someone close to them
• 23% had a family member who was ill

 

A key barrier to universal depression screening for women during pregnancy and the postpartum period is that many providers are not comfortable with addressing a positive screening result and are not aware of community resources for follow-up services. To address this barrier, the MCH Program supports a  1.Perinatal Psychiatric Consultation Line. The Periscope Project (Perinatal Specialty Consult Psychiatry Extension) is providing on-demand phone consulting between off-site perinatal psychiatrists and patients’ local providers practicing in other fields of health care. The provider-to-provider tele-consultation addresses psychiatric and substance abuse disorders in women who are pregnant, postpartum, and breastfeeding. Community resource information is provided on appropriate services for additional treatment and support. Free educational tools, including downloadable toolkits and presentations, are available at www.the-periscope-project.org. In addition to MCH Title V funding, The Periscope Project received grant funding from the United Health Foundation for three years.

 

Since 2017, the project developed the infrastructure to support tele-consultations and evaluation, recruited and enrolled providers, launched the live consultation access, and implemented statewide expansion. The project got off to a strong start and continued to experience growth. By December 2018, 488 providers were enrolled, exceeding the goal of 350 enrolled providers by December 2019. During the first eighteen months of operations, July 2017 through December 2018, the following services were provided: a) 503 provider-to-provider tele-consultations, b) 117 educational presentations (95 online modules viewed and 22 in-person presentations to 742 providers), and c) 208 linkages to community resources to support mental health. Provider satisfaction is at the highest level. A 3-question post-encounter survey with 346 out of 502 providers responding identified: a) 100% of providers agreed or stongly agreed they were satisfied with the service they received, b) 100% of providers indicated their most recent consultation helped them to more effectively manage their patient care, and c) 100% of providers indicated that they will incorporate the information they learned in the future care of patients.

 

The Periscope Project’s success is in part due to ease of use. Providers do not need to enroll before their initial use of the service. About 30% of users enroll at the time of the first call. Calls are triaged in less than 5 minutes. Providers receive a return call from a perinatal psychiatrist within 8 minutes on average. Approximately 56% of the time calls were returned within 5 minutes. This rapid response time allows providers to develop a plan of care while the woman remains at the clinic.

 

The University of Wisconsin-Milwaukee is currently evaluating the first eighteen months of the project. Baseline data for cost and utilization was identified with an initial analysis of Medicaid claims data for a six-month period before the launch of The Periscope Project and post project launch. Two surveys provided information on enrollment and utilizing providers. While the project launched in the Milwaukee area and the majority of participating providers are from that area, 2018 focused on statewide availability and experienced utilization by providers from 10 additional health systems across Wisconsin. As of December 2018, The Periscope Project services were utilized by providers in 35 of the 72 Wisconsin counties. Top five utilizing providers by area of practice and provider type include: OB/GYN physicians (28%), OB/GYN midwives (16%), psychiatrists (14%), OB/GYN nurse practitioners (7%) and family medicine physicians (7%).

 

In 2018, The Periscope Project continued engaging with providers in a critical window of opportunity during pregnancy as evidenced by 60% of calls to The Periscope Project regarding a specific patient. With regard to the 60% of the calls pertaining to the patient, 25% of calls occurred in the 1st trimester, 21% of the calls were in the 2nd trimester and 13% of calls were during the 3rd trimester. Engaging early in pregnancy supports effective care management and positive birth outcomes.

 

The majority of tele-consultations relate to medications. Most common diagnostic concerns discussed during tele-consultations were related to mood and anxiety disorders, both of which can often be reasonably managed in a primary care or obstretrical setting. When asked what providers would do if they had not connected to The Periscope Project, 49% indicated they would refer the woman to another provider, research on their own or consult another professional.  Each of these options would have resulted in delayed or missed care due to wait times for mental health providers or women not able to make or keep additional appointments. Post survey comments from utilizing providers indicate that they are able to develop a care plan and initiate treatment while the patient is still in their office.  A provider described this impact: “I feel compliance with medications and therapy is greater because this consult is so timely. I can send the patient out the door with a prescription and a follow up plan.”

 

2. To understand the scope of perinatal depression and inform stategy development, Wisconsin conducts maternal mortality and morbidity reviews. The Wisconsin Maternal Mortality Review Team (MMRT) was established by the Wisconsin Division of Public Health and the Wisconsin Section of the American College of Obstetricians and Gynecologists in 1997. Before 1997, cases of maternal mortality were reviewed by a committee of the Wisconsin Medical Society. The MMRT is supported through Title V.

MMRT is composed of public health and health care experts who represent professional organizations involved in the delivery of health care to pregnant women in Wisconsin. The MMRT strives to include representation from multiple disciplines, including public health services, perinatal nursing, midwifery, social work, psychiatry, and obstetrics. Maternal deaths are identified using the pregnancy status checkbox on the death certificate. Wisconsin Vital Records Office also cross-references death certificates of women of reproductive age with birth certificates to identify additional cases. Once relevant maternal death, birth and fetal death certificate data has been obtained, perinatal medical records, coroner/medical examiner reports (CME), police reports, and social services records are requested. The team meets quarterly  to review the information gathered on each case and determine whether or not the death was pregnancy related or associated. The team then discusses recommendations  regarding preventability of the death.

 

A review of  pregnancy-associated deaths identified that women suffering from existing mental health issues or with a history of previous mental health issues may not get the services they need. The Wisconsin Maternal Mortality Review Recommendations Report released in 2018 highlighted that all women should be screened for mental health issues and suicide risk before, during, and after pregnancy to identify risk. Women with risk for suicidality need to be linked to services to assure ongoing screening and appropriate support and intervention. Other recommendations relate to chronic disease, continuity of care, risk-appropriate care, and substance abuse. The report can be used to provide timely information to the public and the Wisconsin Perinatal Quality Collaborative (WisPQC), and its findings were presented at the 2018 Statewide Perinatal Conference.

 

In addition to continued surveillance of maternal deaths, the MCH epidemiology staff worked with the University of Illinois at Chicago and the Illinois Department of Public Health on a project to monitor morbidity among women of reproductive age with a focus on conditions of mental health and substance use. A new indicator was finalized in 2018 and published in Public Health Reports in January of 2019. This indicator can now be used by the MCH Program and its partners to better understand the burden of mental health and substance use in women of reproductive age. This partnership also spent 2018 working on the development of a fact sheet that highlights mental health and substance use issues across the life course, with a planned completion in 2019. 

 

The MMRT completed implementation of the new CDC database MMRIA (Maternal Mortality Review Information Application) at DHS in 2018. MMRIA expedites the case abstraction process and refines the case summaries. As MMR has grown in national importance, Wisconsin has been one of the states at the forefront. During 2016, the MCH staff participated with AMCHP in designing the web portal for maternal mortality. This portal is  an essential source of information for states looking to begin MMR. The abstractors have begun to use the new MMRIA database with the transition to the next five year cycle beginning with 2016 cases (abstraction for 2016 cases began in 2018).

 

A more recent focus for the Wisconsin MMRT has been on how reviews of cases involving substance use are abstracted and discussed.  The team continues to work with MMRT experts in addiction medicine and mental health, and are actively examining the feasibility of incorporating prescription drug data from the Prescription Drug Monitoring Program (PDMP) into the case reviews. Late last fall, we pursued a grant opportunity with the CDC Foundation working with the Opioid Research Coordination Unit. The MMRT will perform a comprehensive data abstraction and review by a multidisciplinary committee, including a mental health provider and an addiction specialist, of all pregnancy-associated overdose deaths.All data will be documented in MMRIA. 

 

There was a plan 3. to collaborate with the March of Dimes in 2018 to promote the IMPLICIT Interconception Care Model  that incorporates perinatal depression screening into well child exams. The IMPLICIT (Interventions to Minimize Preterm and Low Birth Weight Infants through Continuous Improvement Techniques) Inter-Concepton Care Model promotes brief screening and interventions to address  health risks of mothers at well child visits. In addition to perinatal depression screening and follow-up services, the model addresses smoking, family planning and mutivitamin/folic acid consumption. This strategy is on hold as the March of Dimes did not move forward with this work.  However, implementation of IMPLICIT remains a future activity on the Wisconsin March of Dimes Strategic Mission Impact Plan. The MCH Program would also like to explore this approach in the future.  It is a strategy to reach women who do not receive a postpartum check-up or return to comprehensive primary care services , but bring infants to multiple medical appointments during the first year of life.

 

To further support perinatal depression screening, the MCH Program 4. promoted online training modules to assist PNCC, home visiting, women’s health, public health and other providers in understanding and implementing screening. This project evolved to meet the requests of local providers for information on how to screen, refer and support pregnant and postpartum women for depression. Wisconsin experts in perinatal depression screening, evaluation, treatment, and supportive interventions contributed to the modules. Sixteen online modules were created in 2015 and 2016 to provide education and guidance on issues associated with perinatal mental health and perinatal mood disorders. The series covers a wide array of topics beginning with those that are most important to help providers become competent and comfortable with screening for perinatal depression. The initial modules address background information including prevalence, risk and protective factors and symptoms of depression in the perinatal period. Education is provided to support screening, including recommendations for frequency, use of validated, standardized screening tools, and approaches for introducing screening to clients. Other important topics include managing the safety of women and how to tell the difference between depression and other mood, anxiety, and psychiatric disorders that are seen in pregnant and postpartum women. Additional modules addressed cultural expressions of depression, sleep, and how to support women who are receiving mental health treatment. These later modules include non-pharmacologic interventions to promote the health and well-being of women suffering from any level of depression symptoms. The final three modules discuss postpartum depression in the context of culture and relationships.

 

The following modules are available at www.dhs.wisconsin.gov/mch/pncc.htm:

1. Series Introduction
2. Overview of Perinatal Mental Health
3. Introduction to Screening
4. The Screening Conversation (including practice cases)
5. Addressing Safety Concerns
6. Information to Support Sleep Interventions
7. Interventions to Support Sleep
8. Psychosocial Stages of Pregnancy
9. Tale of Twos (Postpartum Psychosis)
10. Medication and Breastfeeding
11. Developing an Action Plan
12. Beyond Depression Part 1
13. Beyond Depression Part 2 (including case studies)
14. Mother-Infant Relationships
15. Supportive Interventions
16. Cultural Considerations

 

The maternal mental health modules were promoted with public health providers and Prenatal Care Coordination providers at regional PNCC network meetings in 2018. Educational sessions emphasized how the modules can support workforce development and improvements in perinatal depression screening practices. There was a focus on the following topic areas: maternal depression, symptoms and impact, 2) skill development for connecting with families on maternal depression, and 3) screening strategies and follow-up services for positive screens. The Periscope Project was also presented at these sessions with information on the tele-consulatation service, community resources and additional educational tools. The joint presentations provided participants with a comprehensive set of resources to support perinatal depression screening.

 

Additionally, the maternal mental health modules were promoted with home visitors. Home visiting agencies have ongoing contacts with women during pregnancy and throughout the first year (and more depending on program model) after the birth of a baby. This long term relational support allows for screening tools to be used during incremental times of the prenatal and post-delivery period.  The most common perinatal depression screening tools used by home visitors are the Edinburg Postnatal Depression Scale and Patient Health Questionnaire-9.  The presence of the home visitor allows for client informational support if a referral is needed. The Department of Children and Families contracts with the UW-Milwaukee Child Welfare Partnership to support training of home visitors. The MCH Program collaborated with the training partner to include the maternal mental health modules in the Resource Toolkit for Home Visiting and other Early Childhood Professionals (https://uwm.edu/mcwp/home-visiting-early-childhood/). These resources complement other training resources available to home visitors related to mental health well-being including sessions on ACEs, trauma and a perinatal depression algorithm.

Newborn Screening Program

MCH Program staff, in partnership with the Wisconsin State Laboratory of Hygiene (WSLH), administer the Wisconsin Newborn Screening (NBS) Program. The NBS Program in the Family Health Section at the Department of Health Services (DHS) continues to partner with the University of Wisconsin Pediatric Cardiology Department, Wisconsin’s Early Hearing Detection and Intervention (EHDI) Program Sound Beginnings, Birth Defects, Vital Records, and MCH/CYSHCN Programs. The following information pertains to infants screened in 2018:

• There were 63,451 infants screened for 44 different congenital disorders by blood. Of the 63,451 infants, 122 were diagnosed with a condition because of this blood screening, and 100% were referred for appropriate follow-up care
• There were 62,804 infants born who were screened for hearing loss, and 108 of these infants were diagnosed with hearing loss. Of the 108 infants, 104 infants were referred to the Wisconsin Early Intervention Program. Among the 104 infants, two additional infants were referred to out-of-state Early Intervention Programs. Regarding children ranging from infants to age 3, over 98% diagnosed with hearing loss were referred to Early Intervention. All parents of children who are deaf or hard of hearing were offered parent to parent support through the Wisconsin Sound Beginnings Parents Reaching Out service. 
• There were 60,921 infants born who were screened for Critical Congenital Heart Disease (CCHD). Among those screened, 76 infants did not pass their CCHD screening, and an estimated 152 infants were diagnosed with CCHD, all of whom received appropriate follow-up care.

The NBS Advisory Group Umbrella Committee and its eight subcommittees: Critical Congenital Heart Disease (CCHD), Cystic Fibrosis/Molecular, Endocrine, Education, Hearing, Hemoglobinopathy, Immunodeficiency, and Metabolic are supported by the NBS Program at DHS. The Umbrella Committee and subcommittees meet biannually to advise DHS on emerging issues, quality assurance, and technology in NBS.

The committees also make recommendations to add or delete conditions to or from the NBS panel. If a recommendation is made by one of the eight subcommittees, it is routed to the Umbrella Committee. When a recommendation is made by the Umbrella Committee, it goes to the Secretary’s Advisory Committee on Newborn Screening (SACNBS). The SACNBS advises the DHS Secretary on policy issues related to NBS, including making recommendations for additions to and deletions from the mandatory panel of NBS conditions. The SACNBS continues to review nominations for addition to the NBS panel. Information regarding nominations and final recommendations is posted on the DHS website at https://www.dhs.wisconsin.gov/newbornscreening/process-additions.htm

The NBS Program, WSLH, Wisconsin Sound Beginnings, Vital Records, and MCH/CYSHCN work collaboratively to link newborn screening data with other birth data.

Outreach and Education for Providers and Families

The NBS Program works with the NBS Education Subcommittee to educate the public and medical providers about NBS. NBS brochures are available for parents and NBS partners, including a Plain community NBS brochure developed for the Amish and Mennonite populations. NBS information is provided during the prenatal period through three screen fact sheets providing information on blood, hearing, and heart screening. NBS websites also provide hospitals and health care providers up-to-date information. Quality assurance projects aimed to decrease the percentage of unsatisfactory specimens and specimens missing key information were developed in 2018. The project included an additional webinar on how to properly complete the information on the card. Together there are three webinars that highlight specimen collection available for healthcare providers. A new monthly quality assurance report was released in January 2018 that tracks the recollection process following an initial unsatisfactory specimen. Recollection should occur within 7 days after notification and currently approximately 70% of specimens meet this goal. The Newborn Screening Program’s Out of Hospital (OOH) Coordinator continues to ensure access to NBS among the OOH community. Out-of-hospital births consistently account for much of the babies never screened. In 2018, 65% of babies born out-of-hospital were screened for hearing loss, compared to 25% in 2011. 89% of babies born out-of-hospital in 2018 were screened for CCHD. 69% of the babies not screened for CCHD had a reason documented for not receiving screening, and 72% of those reasons listed were parental refusals. 90% of babies born out-of-hospital in 2018 received blood screening, compared to 88% in 2015.

NBS Follow Up

Blood: DHS provided diagnostic services, special dietary treatment as prescribed by a physician, and follow-up counseling for patients and families through contracts with specialty clinics and local agencies. Seven cystic fibrosis centers, three metabolic clinics, a sickle cell comprehensive care center, a genetics center, and a local health department received these contracts. The NBS Program Coordinator worked with the contracted agencies to promote ongoing clinical services, care coordination with the medical home, links to services, and transitions to adult care. The contracted agencies continue to provide data and reporting to DHS. Work with the contracted agencies also includes the coordination and tracking of special dietary products for patients with congenital disorders.

Hearing: Sound Beginnings supports Wisconsin hospitals and providers to increase the number of babies screened, reduce the percentage of babies not receiving follow-up (lost to follow-up), increase the percentage of babies receiving timely diagnosis of permanent hearing loss, and increase the percentage of babies enrolling in early intervention. The WI EHDI Tracking Referral and Coordination (WE-TRAC) data system allows for real-time surveillance and tracking of all babies born in a WI hospital or in an out-of-hospital setting so that timely interventions can be applied on behalf of families and babies.

Heart: The NBS Program provided clinical decision support and guidance to providers, while ensuring that infants suspected of or diagnosed with CCHD received appropriate follow up evaluation and care.

Additional Activities

The Wisconsin NBS Program participated in state workgroups and collaboratives and continues involvement with the Midwest Genetic Network HRSA grant with Wisconsin representatives serving on workgroups and sharing presentations at meetings.

Birth Defects Prevention and Surveillance Program

 

The Wisconsin Birth Defect Prevention and Surveillance System (System) is made up of the Wisconsin Birth Defects Prevention and Surveillance Program (WBDPSP) and the Wisconsin Council on Birth Defect Prevention and Surveillance (Council) as outlined in Wis. Stat. § 253.12 (https://docs.legis.wisconsin.gov/statutes/statutes/253/12). This system is located under the Children and Youth with Special Health Care Needs Program (CYSHCN), within the Bureau of Community Health Promotion, Division of Public Health. The system supports the Wisconsin Department of Health Services’ (DHS) vision of everyone living their best life and DHS’ mission of protecting and promoting the health and safety of the people of Wisconsin.

The Program’s mission and work focuses on the three public health core functions of assessment, assurance, and policy development in conjunction with the following requirements:

 

1. Maintain an up-to-date registry that documents the diagnosis determined of any infant or child residing in Wisconsin who has a birth defect, regardless of residence, that facilitates:

• Identification of risk factors for birth defects
• Investigation of the incidence, prevalence, and trends of birth defects
• Development of primary prevention strategies to help decrease the occurrence of birth defects
• Referrals of those with birth defects to early intervention programs and other support services

2. Support an advisory council on birth defect prevention and surveillance. The Council is responsible for determining the listing of reportable birth defects, and forwarding the list to the DHS Secretary who maintains the list.
3. Outline the reporting methodology requirements for data quality and establish reporting requirements for reporters (physicians and specialty clinics and hospital may report) of birth defects.
4. Protect the confidentiality of children born with birth defects and their families through administrative assurances, including new statute language that allows the option to refuse to release the name and address of the infant or child.

 

In addition, the Program:

 

• Follows, supports, and promotes the mission of the CYSHCN Program in assuring that CYSHCN (i.e. birth defects) are properly identified and referred, receive high-quality coordinated care, and, with their families, obtain the supports they need
• Promotes birth defects policy, program integration, and education to assist families and their providers in advancing primary and secondary disability prevention
• Collaborates with national, state, regional, and local health care providers supporting the collection, analyses, and dissemination of state and population-based birth defects surveillance data
• Provides staffing support, guidance, and program content expertise to the Council

 

The Program is required to maintain a birth defects registry of diagnosed birth defects of any child age birth to two years, born in Wisconsin and/or receiving health care services in Wisconsin per Wis. Stat. § 253.12.

 

The Wisconsin Birth Defects Registry (WBDR) is a secure, web-based system that allows pediatric specialty clinics and physicians to report one child with a birth defect at a time or upload multiple reports from an electronic medical records system. Reporters may also submit a paper form to the WBDR state administrator for inclusion in the Registry. The Registry collects information on the child and parents, the birth, referral to services, and diagnostic information for one or more of 87 reportable conditions. The current list is available on the last page of the paper reporting form, DPH (F-40054).

 

Physicians and specialty clinics serve as required reporters; hospitals maintain a voluntary reporter status. In practice, clinics submit reports for multiple physicians, health care systems, and certain hospitals. Since 2004, when DHS piloted a process allowing organizations to upload multiple reports from electronic medical records systems, organizations such as Marshfield Clinic, Dean Health System, Children’s Hospital of Wisconsin, Gundersen Health System, and UW Health Foundation now utilize the electronic upload option.

 

The 2017 Biennial Budget Bill, (Assembly Bill 64 - 2017 Wisconsin Act 59) enacted on September 22, 2017 made significant changes to the Registry and reporting allowing the Program to better understand the incidence of birth defects in Wisconsin. The new language improves the information in the Registry by making the Program reporting an opt-out versus an opt-in. This means that reports to the Registry are to contain identifiers including name and address of the child. Parents or guardians can request identifying information be removed from the Registry at any time. This is consistent with other newborn screening applications administered by DHS.

 

Overall this change:

 

• Creates better linkage of the data to other data sets including vital records
• Helps determine if the number and type of certain birth defects present are increasing or decreasing
• Assures unduplicated counts of children identified with a birth defect(s)
• Facilitates appropriate referral to services and resources
• Provides insight into what prevention and early intervention activities are warranted and effective
• Helps identify environmental risks that may be responsible for certain birth defects or lend to clusters of birth defects in a particular area of the state.

In addition, the law maintains strong protections for personal data, maintenance data over time, and streamlines the process of adding or removing reportable conditions with the responsibility of annual review and determining the list of conditions charged to the Council. Annually through unanimous vote, the listing of reportable conditions is forwarded and maintained by the Department Secretary. The current list of conditions is available electronically and on the back side of the paper reporting form (DPH F-40054: www.dhs.wisconsin.gov/forms/f4/f40054.pdf).

 

In 2018, the WBDR reported 373 new infants with birth defects between the ages of 0-2 years, which is less than one percent of all births. Nationally, about 1 in 33 babies are born with a birth defect (about 3%); therefore due to low reporting to the registry, the data does not represent the true prevalence of birth defects in Wisconsin. This significant gap in understanding the prevalence of birth defects can impact the ability to provide family supports and services. Overtime, it is expected that the 2017 changes to the birth defect statute will improve reporting by ensuring that the incidence of birth defects will be better monitored and tracked while also addressing the privacy concerns of parents.

 

The Department began full program reporting July 1, 2018. Implementation included developing the necessary forms for providers, assuring parental notification for the option to refuse to release the name and address of the infant or child to the registry, a letter from DHS to parents with information regarding referral to help families connect to the five CYSHCN Regional Centers and other referral resources, and fact sheets about the WBDR for providers and for families. All WBDPSP forms, fact sheets, and publications can be accessed at the CYSHCN Program—Birth Defect Prevention and Surveillance System website at www.dhs.wisconsin.gov/cyshcn/birthdefects/index.htm. The Program with Council advisement, is working to develop a new data reporting platform to be rolled out in the fall of 2019, with pilot testing through the summer of 2019.

 

Birth Defects are serious in Wisconsin as highlighted in the following:

 

• Birth defects are the leading cause of all infant deaths in Wisconsin, accounting for approximately 100 deaths per year (Wang, Y., et al. (2015). Racial/ethnic differences in survival of United States children with birth defects: a population-based study. The Journal of pediatrics, 166(4), 819-826. Retrieved from https://doi.org/10.1016/j.jpeds.2014.12.025).
• From 2012-2016, birth defects were the second leading cause of infant death among children born to Black mothers (18 per 10,000 births) and the leading cause of infant death for children born to White mothers (12 per 10,000 births) (Wang, Y.,et al, 2015). For infants born with a birth defect, survival is poorer among babies born to Black or Hispanic mothers; compared to babies born to non-Hispanic White mothers (Wisconsin Department of Health Services, 2017). Birth Defects Prevention and Surveillance System - Children and Youth with Special Health Care Needs (CYSHCN). Retrieved from www.dhs.wisconsin.gov/cyshcn/birthdefects/registry.htm).
• In Wisconsin, the estimated lifetime cost of birth defects for infants born in each year exceeds $140 million.( https://www.dhs.wisconsin.gov/cyshcn/birthdefects/registry.htm)

 

Between mid-2004 and the end of 2018, 24,773 conditions have been reported to the WBDR. The reports by type of condition show that cardiovascular birth defects are the most common, with 10,101 conditions reported. The second most common category of birth defects is syndromes and associations (2,595 conditions) followed by genitourinary (2,304 conditions).  

 

 

Figure 4: Wisconsin Birth Defects, 2004-2018

 

 

 

A core list of birth defects is reported annually to the National Birth Defect Prevention Network (NBDPN) and used to report on national birth defect incidence and trends. The Centers for Disease Control and Prevention (CDC) cites birth defect surveillance systems as a leading contributor to reducing birth defects.

 

The WBDR staff oversees data requests. Researchers studying birth defects may use summary registry reports or request specific datasets. There are several projects supported by the Registry that include:

 

1. Ongoing participation with the DHS, Bureau of Environmental and Occupational Health, Division of Public Health, in a multi-year “Environmental Public Health Tracking Program” project funded by the CDC, focusing on tracking birth defects incidence and investigating any relationship between birth defects and environmental hazards.
2. Participation in the department’s Zika virus preparedness work by providing a baseline count of microcephaly and other Zika-associated birth defects cases that are identified in the Registry. This research enhances and strengthens birth defects surveillance during emerging public health threats impacting MCH. Zika virus-related activities, within the Division of Public Health (DPH) are coordinated with the Bureau of Communicable Diseases, the Bureau of Community Health Promotion, and the Office of Preparedness and Emergency Health Care, www.dhs.wisconsin.gov/zika/women.htm.
3. Surveillance efforts for critical congenital heart disease (CCHD).  In 2018, 98% of all babies born in Wisconsin had either CCHD screening, or a valid medical reason listed in their chart as to why they did not receive a screen. Reportable heart defects identified by CCHD screening are reported to the WBDR.

 

In addition, there are several projects supported by the Program that include:

Birth Defects—Nourishing Special Needs Network (NSNN) workforce development training and mentorship program

The NSNN is a collaborative quality improvement initiative developed by the Wisconsin CYSHCN Program, the Birth Defects Prevention and Surveillance program, the Waisman Center, and the Wisconsin Special Supplemental Nutrition Program for Women, Infants and Children (WIC) to build nutrition services capacity (including case management and information and referral) for the identification, intervention, and referral of infants and children in WIC, diagnosed with birth defects. Data reveal the NSNN sites currently serve 25% of the Wisconsin statewide WIC client caseload. Efforts to spread to other WIC agencies is essential to help meet the needs for this population. It is estimated that there may be 5,000 infants and children with special health care needs, of which 600-700 may have birth defects based on the WIC caseloads.

 

The NSNN provides:

 

• Training, technical assistance, and educational outreach programs, for the NSNN members at three tertiary neonatal and pediatric centers—birth defect medical/nutrition specialty clinics
• Collaboration with health care providers to ensure documentation for the provision of special infant and pediatric formulas through WIC and for Medicaid reimbursement of nutritional products

 

Expansion of the NSNN will continue in 2019 with a structured and evaluative program utilizing best practice mentoring and peer nutrition consultation models. The United States Department of Agriculture (USDA) requires states and local agencies to develop a Nutrition Services Plan that establishes nutrition priorities and focuses activities to improve participant health and nutrition outcomes. To address this requirement, Wisconsin WIC provides 4 Nutrition Services Mentoring Education Work Plan options for local agencies to choose to better serve children with special health care needs.

 

Evaluation of the program reveals that WIC dietitians frequently identify the need for: 1) assessment, diagnosis, and referral for suspected health care problems; 2) Specialized nutritional assessment and medical nutritional therapy; and 3) Special formula or formula changes based on diagnosis. In addition, WIC sites demonstrated the following outcomes: 1) A three-fold increase in identifying infants and children with birth defects and other health care needs, accounting for almost half of the referrals to the CYSHCN Regional Centers; 2) Increased communication and collaboration with other agencies and medical providers; and 3) Improved nutritional care with early intervention programs resulting in one fifth of the referrals to the Wisconsin Birth to 3 Program.

 

The NSNN received state and national attention via presentations at the Wisconsin Public Health Association (WPHA) conference, the Wisconsin Dietetic Association conference, the National Birth Defects Prevention Network (NBDPN) conference, the National WIC Association Conference, the National Association of County and City Health Officials conference, the Wisconsin Association for Perinatal Care (WAPC), the Association of University Centers on Disabilities, the Association of Maternal and Child Health Programs (AMCHP), and the Association of State and the Territorial Public Health Nutrition Directors meeting. Most recently, the program was highlighted in the AMCHP Spring 2018 Pulse Newsletter: http://www.amchp.org/AboutAMCHP/Newsletters/Pulse/MarchApr18/Pages/Nutrition-for-All.aspx

 

See NPM 04: Breastfeeding for more information on the Nourishing Special Needs program.

Stillbirth services through the Children’s Health Alliance of Wisconsin (CHAW) Infant Death Center

Through an integrative contract objective to assure statewide availability of bereavement and counseling services, the Children’s Health Alliance of Wisconsin - Infant Death Center collaborates on several projects to include opportunities and strategies to form common messaging, promote grief and bereavement materials, assure information and referral to supportive services, and distribute resources statewide on stillbirth (https://www.chawisconsin.org/initiatives/grief-and-bereavement/). This program has been presented at AMCHP, WAPC, WPHA, and the NBDPN meetings.

Folic Acid awareness: Survey and module to address prevention of neural tube defects

Biennially, the Program in collaboration with WIC includes a folic acid survey module in the Behavioral Risk Factor Surveillance System survey. The folic acid module assesses folic acid awareness, how folic acid messages are communicated, knowledge of folic acid benefits, and consumption of multi-vitamins containing folic acid. Information from the module indicates that providing vitamins and education to low-income women is beneficial, and that some reproductive health providers have changed their practice of care guidelines assuring client access to multivitamins with folic acid through prescriptions.

 

In May 2015, Medicaid removed the diagnosis restriction on prenatal vitamins allowing them to be prescribed for all women ages 12-60 regardless of pregnancy status. When this occurred the Program in partnership with the Waisman Center implemented Folic Strong (https://www.folicstrong.org/), a professional education and social media campaign with links to free vitamins, using Facebook, Twitter, and Instagram.

 

As a result of this campaign, there was a 28% increase in the number of women taking prenatal vitamins with folic acid 3 months after the vitamin giveaway. The evaluation found that for women to continue to take vitamins with folic acid, policy change alone is not effective, provider education is critical, and social media only works if it is actively promoted by an expert. Folic Strong continues to foster partnerships to improve provider and public awareness of the importance of folic acid and to drive policy change that increases access to folic acid for all women of reproductive age.