Illinois’ priority for the Perinatal and Infant Health Domain is:

• Support healthy pregnancies and improve birth and infant outcomes (Priority # 2)

Illinois has long worked to improve the health of infants and pregnant/postpartum women for many years. Reflecting this effort, there has been modest, steady progress on infant mortality outcomes in Illinois.  Over the last five years, there has been a small average reduction in perinatal mortality (NOM #8), infant mortality (NOM #9.1), neonatal mortality (NOM #9.2), post neonatal mortality (NOM #9.3) and preterm-related mortality (NOM #9.4).  Non-Hispanic black infants still experience much worse outcomes than non-Hispanic white infants on all mortality measures mentioned. For example, black infants have more than two times than infant mortality rate than white infants.  For the mortality outcomes mentioned, Illinois is approximately in the middle of the range compared to other states. For example, the Illinois infant mortality rate is ranked 27 out of 50 states, and the perinatal mortality rate is ranked 28 out of 50 states.

Infant safe sleep is an area showing conflicting information about progress. More than 80% of infants are now placed to sleep on their backs in Illinois (NPM #5A), more than 75% are placed on a separate, safe sleep surface (NPM #5B), and nearly 50% are in bed without soft bedding or blankets (NPM #5C).  Despite this, Illinois has experienced an increase in sleep-related sudden unexpected infant death (SUID) mortality; in 2015, there were 86 sleep-related SUID deaths per 100,000 live births in Illinois (NOM #9.5), and non-Hispanic black infants had more than four times the SUID death rate of non-Hispanic white infants. 

With regard to infant feeding, Illinois continues to make progress with NPM #4A and #4B – more than 85% of infants breastfeed, a higher number than in recent years, and more than 25% of infants breastfeed for more than 6 months, a 27.1% average annual improvement over the last five years. Due to several statewide initiatives, Illinois has made enormous progress in recent years in availability of hospital-based breastfeeding support. The number of Baby-Friendly certified delivery hospitals increased from only 4 facilities in 2014 to 25 facilities in 2018. Accordingly, the percent of Illinois infants who were delivered in a Baby-Friendly hospital increased from only 2.6% in 2014 (Illinois ranked 33 out of 50 states) to 7.8% in 2016 (Illinois ranked 40 out of 50 states) to 22.3% in 2018 (Illinois ranked 21 out of 50 states).

Illinois women delivering a very low birth weight (VLBW) infant are more likely than ever to give birth in a risk-appropriate (Level III) hospital, with 81.7% of VLBW infants delivered in a level III hospital during 2018 (NPM #3). This indicator has steadily improved since 2010, when it was only 77.6%. Non-Hispanic black, white, and Hispanic VLBW infants all have similar rates of risk-appropriate care, one of the few measures in perinatal health that does not have noticeable disparities. This speaks highly of the Illinois regionalized perinatal system, which prioritizes and facilitates transports to appropriate level facilities.

Illinois’ mothers and children continue to experience adverse outcomes related to perinatal substance use.  The rates of both neonatal abstinence syndrome (NOM #11) and fetal alcohol exposure in the last three months of pregnancy (NOM #10) have risen over the last five years. Non-Hispanic white infants are two times more likely than non-Hispanic black infants and nearly four times more likely than Hispanic infants to experience NAS.  Compared to other states, Illinois has a low rate of NAS (ranked 44 out of 50), and a fairly high rate of fetal alcohol exposure (ranked 7 out of 33 states reporting data). 

The selected NPMs, SPM and ESMs for the perinatal/infant health domain are still relevant and not being changed at this time.

During FY18, the Illinois Title V Program utilized the following strategies to address the Infant and Perinatal Health Domain priority: 

1. Maintain a strong system of regionalized perinatal care by supporting perinatal network administrators and outreach/education coordinators and identifying opportunities for improving the state system.

Illinois has two perinatal nurses (one northern region and one southern region) to cover all hospitals in Illinois that have perinatal units, approximately 120 facilities. The perinatal nurses work in conjunction with the ten administrative perinatal centers.  Each administrative perinatal center has one perinatal nurse administrator, two nurse educators, one maternal fetal medicine co-director and one neonatology co-director.  The administrative perinatal centers and the perinatal nurses perform site visits of the perinatal hospitals in Illinois to assess for compliance to the Illinois Perinatal Code 640. 

The two perinatal nurses are fully funded by the Illinois Title V Program and function as nursing specialists in maternal, child and adolescent health issues:

• providing nursing expertise and leadership in the development, interpretation and enforcement of regulations and program contract specifications related to programs impacting women throughout the reproductive cycle and infants
• working with other divisions at IDPH and external stakeholders such as the CDC and FDA to provide expertise and support for perinatal related needs
• coordinating and monitoring assigned maternal and child health program activities
• attending various state and local committee meetings (e.g. State’s Perinatal Advisory Committee) to identify opportunities for collaboration and alignment between programs
• supporting hospitals statewide with education and technical assistance

I. Utilize the Levels of Care Assessment Tool (LOCATe) to describe neonatal and maternal levels of care and inform improvements to the regionalized perinatal system (completed in FY16-18).

During 2015-2016, Title V implemented the Levels of Care Assessment Tool (LOCATe) to capture information about the neonatal and obstetric personnel, services, and resources available at every birthing hospital in Illinois. We obtained responses from all 120 birthing hospitals (100%) that were part of the regionalized Illinois system, including four Level III hospitals in Missouri. The LOCATe responses were combined in complex algorithms involving services, equipment, and staff availability to assign estimated maternal and neonatal levels of care based on policy statements from national professional organizations (American College of Obstetricians and Gynecologists, Society for Maternal-Fetal Medicine, and American Academy of Pediatrics). Facilities’ LOCATe responses were linked to the final birth certificates for 2014-2016 to enable analysis of outcomes based on the levels of care.

While an updated LOCATe survey is not planned, analysis of the 2015-2016 LOCATe data continued into 2018. The CDC MCH Epidemiology Field Assignee analyzed neonatal mortality for very preterm (VPT) infants according to the neonatal level of care of the delivery facility. This analysis demonstrated similar findings to what has been nationally shown in the literature – that VPT infants delivered in higher level facilities have lower levels of neonatal mortality. Additionally, the analysis showed that the LOCATe neonatal levels of care were better stratifiers of neonatal mortality risk than the Illinois perinatal levels of care – perhaps indicating that adoption of the AAP neonatal levels of care would be a better system of describing risk-appropriate services than the current Illinois perinatal levels. Analyses were shared with the perinatal levels of care policy workgroups to inform decision-making about the revisions to the Illinois administrative code governing the perinatal system.

II. Conduct a study of very preterm infants (<32 weeks) delivered outside Level III facilities to identify reasons for no maternal or neonatal transport and barriers to risk-appropriate care.

Illinois continues to implement a special data collection process to gather information on very preterm (VPT) infants born outside level III hospitals.  Since 2015, OWHFS have implemented a data collection tool with six major sections: infant characteristics, maternal characteristics, information about the hospital admission and stay, reasons why mother was not transported to a level III before delivery, outcome of the infant, and reasons why infant was not transported to a level III after delivery.  All Illinois hospitals that were not level III facilities are required to complete the form for every instance of a live birth at 22-31 weeks gestation and to submit the form through the ePerinet data system.  Hospitals submitted 2018 birth data during January-June 2019; 98.6% of birth certificates for VPT deliveries had a matching VPT review form submitted. These forms are linked to vital records files, enabling detailed analysis of patient characteristics and infant outcomes that are related to a lack of risk-appropriate care. Analysis of the very preterm review forms is ongoing in conjunction with the risk-appropriate care CoIIN workgroup.

III. Convene risk-appropriate care CoIIN workgroup to develop a quality improvement initiative to increase the percentage of very preterm infants (<32 weeks) delivered in Level III facilities.

In 2015, Illinois began a CoIIN workgroup focused on improving the percent of very preterm or very low birth weight infants receiving risk-appropriate care. The goal of the workgroup is to identify the barriers to risk-appropriate care and to develop quality improvement initiatives to overcome these barriers and ensure that more preterm infants are born in appropriate level hospitals.

This CoIIN team developed the concept for the very preterm review form and has worked closely with the Title V epidemiology team to interpret the data and develop evidence-based strategies. During 2018, the workgroup developed a grand rounds presentation that outlined some of the major findings and messages about risk-appropriate care. Analysis of risk-appropriate care data and the very preterm review forms is an ongoing process that is done in conjunction with the risk-appropriate care CoIIN workgroup.

IV. Update state Obstetric Hemorrhage Toolkit based on information in the ACOG patient safety bundle and distribute updated materials to all Illinois hospitals (completed in FY18).

In 2017 and early 2018, birthing hospitals began the implementation of policies and procedures outlined in the Illinois Obstetric Hemorrhage Education Project (OBHEP).  Administrative Perinatal Center staff and the IDPH perinatal nurses provided technical assistance for birthing hospitals during the implementation phase of this project. Some birthing hospitals struggled with included the following: implementation of quantification of blood loss during surgical deliveries; the establishment of the protocol for patients who refuse blood products; the implementation and formulation of a Massive Transfusion Protocol; the culture change surrounding the treatment of Obstetrical Hemorrhage; and participation of both obstetrical and surgical providers in the updated hemorrhage education. Birthing hospitals around the state required various levels of education needs and support to implement this project. Administrative Perinatal Center staff and IDPH perinatal nurses answered questions from various stakeholders, discussed the project at Maternal Morbidity and Mortality reviews at birthing hospitals and a downstate birth center, reviewed massive transfusion protocols at site visits, reviewed obstetrical hemorrhage carts at site visits, and provided educational assistance to hospital staff. The support of this project continues through the review of each birthing hospitals reporting of ongoing education to staff and healthcare providers.

V. Designate and maintain perinatal levels of care and support administrative perinatal centers.

Illinois Perinatal Code 640 requires hospitals to have site visits done every three years.  These visits include one perinatal nurse, one representative from the Perinatal Advisory Committee and the administrative perinatal center team which includes one perinatal nurse administrator, one neonatal nurse educator, one obstetric nurse educator, one maternal fetal medicine director and one neonatology director.  The purpose for the perinatal site visit is to assess if a perinatal hospital is in compliance with the State’s Perinatal Code 640 according to the hospital’s designated level of care.  Standards for perinatal care and resource requirements are reviewed for each hospital as related to the hospital’s perinatal level; the levels are I, II, II with Extended Neonatal Capabilities (II-E) and III. 

The IDPH perinatal nurses also attend morbidity and mortality reviews at hospitals to keep abreast of emerging best practices and trends in the field. Quality improvement technical assistance site visits are also provided as requested. During FY18, the northern perinatal nurse attended 23 perinatal site visits, 10 morbidity and mortality reviews at the hospitals and 11 quality improvement/assurance or technical assistance visits. The southern perinatal nurse attended 17 perinatal site visits, 6 morbidity and mortality reviews at delivery hospitals, and 3 quality improvement/assurance or technical assistance visits.

Illinois has a regionalized perinatal healthcare program which provides the infrastructure and support for Illinois’ birthing and non-birthing hospitals. Ten highly resourced hospitals are contracted as Administrative Perinatal Centers (APCs) and charged with engaging and supporting a network of hospitals. Each birthing hospital had a perinatal level of care designation based on its resources and ability to care for neonates. The goal of the program is to improve birth outcomes through training, technical assistance, consultation on cases with complex health issues and providing transportation to a higher level of care, when appropriate. The Illinois Title V Program provides grants to the ten APCs annually.

Below are FY18 highlights from the ten APCs:

1. University of Chicago hosted 25 education events provided by nurse educators on neonatal and obstetrical topics. 100 Nurses were educated using programs such as STABLE and the AWHONN fetal monitoring series. In addition, 212 nurses attended topics such as ethics, neonatal assessment, and labor support. University of Chicago also provided interdisciplinary simulation exercises for OB hemorrhage and neonatal resuscitation with a total of 75 participants attending.
2. Stroger Hospital received a March of Dimes grant to administer Diabetic Pregnancy Classes, “Center of My Joy.” These 10- week education sessions were offered to the network hospitals and their community and family members could attend the class with the pregnant patient.  Overall, the class learned about diabetes, how to manage their blood sugars and lowered their hemoglobin A1C. Two sessions were offered and received positive feedback from participants.
3. Northwestern’s perinatal network achieved their goals related to the appropriate recognition, treatment, and management of severe maternal hypertension. At the end of FY 18, 94% of cases with New Onset Severe Hypertension in the network were treated within 60 minutes, 70% in less than 30 minutes, and there were no missed opportunities to treat.
4. University of Illinois at Chicago’s Perinatal Center is working with UI Health Department of Psychiatry to implement an on-line cognitive behavior therapy training program called “Sunnyside For Moms”. The purpose of this project is twofold: (1) content review by healthcare professionals who work with perinatal patients; (2) for women with a history of perinatal depression to provide feedback, identify preferences, feelings, beliefs about "Sunnyside for Moms" content.  The updated program will be implemented at UI Health's Center for Women's Health.
5. Loyola University Medical Center collaborated with non-birthing network hospitals to establish relationships and resources, including having an annual non-birthing hospital network meeting. Other activities included: Conducted SWOT analysis and learning needs assessment specific to hospital, developed and provided resource binder for each hospital, assessed emergency department readiness for perinatal patients with safety and resources of personnel and equipment, and provided on-site education.
6. Rush University began a training project to address competencies in the Level I, II and IIE settings relating to neonatal resuscitation and stabilization. This collaborative process included discussion with Network hospitals to seek input and support. Tools/services were purchased including Neonatal Task Trainers, Neonatal Intubation heads, and STABLE textbooks. The training project will involve APC staff testing and training network hospital staff and then neonatal task trainers will provide training over a three-month period (one quarter). After both training, staff retention will be analyzed before the project is moved to the next hospital. This project will be evaluated through staff retention and monitoring neonatal outcomes of very pre-term babies.
7. Rockford Memorial identified maternal and neonatal transport concerns within the region, specifically around the need to stabilize a patient prior to transfer. The network administrator conducted a comprehensive review of telephone calls, speaking with the individuals involved, and developing a plan for any identified barriers or problems contributing to the issue. The action steps to help resolve or correct the problems frequently included meeting with the individual providers involved at the referring and accepting hospital organizations.  After identifying the root of the problem, issue, or concern, the solution often involved providing education and information to help improve an understanding of the process and protocols, and to determine if any other changes are necessary to ensure quality and patient safety during transport.  The monitoring of regional transport events is ongoing.
8. OSF St. Francis Medical Center continued to offer satellite maternal-fetal medicine clinics in four locations throughout the network to support obstetrical care at the local level. Some high-risk maternal/fetal patients can be followed close to home, which prevents traveling 200+ miles (round trip) to see a specialist.  Neonatology Support is available to local hospitals via tele-neonatology.  This service supports the local provider with resuscitation and stabilization procedures for high-risk and/or unexpectedly ill newborns.  
9. South Central Illinois/St. John’s Children’s Hospital provided education and training for first responders and emergency department staff in 11 cities. This education resulted from an increase in women who were delivering outside of hospital maternity units or at home. Training such as “OB Trauma and Stabilization’ and “CPR for the Pregnant Patient” as well as hands on simulations were provided and a list of emergency equipment recommendations was established. Grant funding was awarded for emergency supplies and distributed accordingly. Since May 2017, over 500 first responders and emergency department staff have been educated.
10. St. Mary’s Hospital in Saint Louis (Cardinal Glennon network) experienced success through efforts of the Illinois Maternal Hypertension project. Over the course of the project, time to treatment within 60 minutes improved from 47% to 81%, discharge education provided to women improved from 72% to 95%, follow up appointments within 10 days improved from 70% to 92%, and the severe maternal morbidity rate for deliveries of women with hypertension subsequently decreased from 17% to 4%.

B. Collaborate with the Illinois Perinatal Quality Collaborative to implement quality improvement projects in birthing hospitals that will improve health outcomes.

1. Birth Certificate Accuracy Initiative (2014-2015)—completed in FY14-16
2. Maternal Hypertension Project (2015-2017)—completed in FY15-17
3. Mothers and Newborns Affected by Opioids (2017-2019) --completed in FY17-19

The support of Illinois’s Title V program enables the Illinois Perinatal Quality Collaborative (ILPQC) to develop, implement, support, and sustain statewide quality improvement initiatives with nearly all of the birthing hospitals in the state in collaboration with the Illinois Department of Public Health (IDPH), State Quality Council, and the Regionalized Perinatal System as well as other state and national stakeholders. The statewide quality improvement initiatives support improved outcomes for mothers and newborns in Illinois related to our most pressing maternal and infant morbidity and mortality issues across hospitals.

The Maternal Hypertension Project was formally completed Fall 2017 and included the development of development of toolkit with resources for teams developed by ILPQC with national guidelines: http://ilpqc.org/?q=Hypertension. The efforts of the Maternal Hypertension Project were sustained in FY 18 by partnering with the Regional Perinatal Network administrators and educators facilitating hospital team development of sustainability plans (template developed by ILPQC), as well as perinatal network discussions of hypertension sustainability at regional quality meetings.

During FY18, the Mothers and Newborns affected by Opioids (MNO) Initiative (MNO) was developed and initiated with both obstetric and neonatal arms. Activities included recruiting clinical experts to develop aims, measures, and key driver diagrams based on national guidelines including the AIM bundle and resources from other Perinatal Quality Collaboratives. Member volunteers were convened to develop the MNO Quality Improvement Toolkit building upon the AIM bundle and examples from other Perinatal Quality Collaboratives. A link to the toolkit developed by ILPQC with national guidelines for Teams is available here: http://ilpqc.org/?q=MNO-OB. ILPQC worked with IDPH in their efforts to develop patient education tools for hospitals including the identification of focus group participants and developing the material content.

• Prescription Pain Medicines and Pregnant Women
• Neonatal Abstinence Syndrome - You are the Treatment
• Neonatal Abstinence Syndrome: What You Need to Know

ILPQC recruited 33 hospitals to participate in Wave 1 of the initiative with at least 2 from each perinatal network, where hospitals reviewed and provided feedback on the data collection form and process prior to launching the initiative statewide in Wave 2. Once launched, the initiative included collaborative learning opportunities for participating hospitals and rapid response data collection. ILPQC served on IDPH NAS Advisory Committee and supported the development of evidence-based recommendations using information already gathered for the MNO toolkit.

ILPQC facilitated several in-person collaborative meetings. The ILPQC 5th Annual Conference (December 19, 2017) had 101 hospital teams in attendance, including 400 physicians, nurses, and public health professionals. The annual obstetric face-to-face meeting (May 30, 2018) had 327 attendees and the annual neonatal face-to-face meeting (May 31, 2018) had 231 attendees, with over 100 individuals attending both face-to-face meetings.

C. Convene partners to support statewide efforts to improve breastfeeding outcomes and reduce disparities.

The OWHFS wrote a grant application in December 2017 seeking funding to educate Illinois women regarding Neonatal Abstinence Syndrome (NAS) and breastfeeding.  With the knowledge that all mothers need opioid education provided to them prenatally and beyond, the purpose of this project was to develop and disseminate educational materials statewide regarding NAS and breastfeeding. To develop these materials, Title V staff worked with our Administrative Perinatal Centers to identify women to serve on focus groups who could provide feedback on the proposed content, layout and design of the materials. These educational materials provided information on prevention and opioid prescription to pregnant women, as well as to mothers that have opioid use disorder. The importance of breastfeeding, providing skin to skin contact, and rooming in with their baby is highlighted.  The grant helped the OWHFS/Illinois Title V to further strengthen their already existing partnership with ILPQC. Together in this collaboration, three sets of educational materials were produced and disseminated statewide. These materials were debuted at the ILPQC MNO initiative kick off meeting in May 2018.  Additionally, the OWHFS was able to present on this work (both oral and poster presentation) at the annual CityMatCH conference in September 2018.

In previous years, Illinois Title V had attempted to convene a group of stakeholders to update the Illinois Breastfeeding Blueprint, a strategic planning document originally published in 2011 that outlines recommendations for improvements in Illinois breastfeeding outcomes and the reduction of racial disparities in breastfeeding. Despite attempts to convene meetings and develop stakeholder engagement plans, organizational changes to the entity that developed the first Blueprint precluded them from having staff members who could participate in the efforts. The decision was made to wait on this work until the external partners could dedicate staff and resources to the project. In the meantime, the UIC team providing epidemiology support to Title V updated data analyses of PRAMS and other data sources to monitor trends in outcomes over time. They are planning to develop an updated “data chapter” that mirrors that of the original Blueprint during FY19.

D. Support hospital Baby-Friendly designation by assessing barriers to progress and provide resources to assist hospitals in overcoming these barriers (completed in FY17).

This strategy was completed in FY17 – no activities to report for FY20.

Based on previous years activities, Illinois has made enormous progress in availability of hospital-based breastfeeding support. The number of Baby-Friendly certified delivery hospitals increased from only 4 facilities in 2014 to 25 facilities in 2018. In 2018 alone, there were 6 facilities that were newly designated as Baby-Friendly. Accordingly, the percent of Illinois infants who were delivered in a Baby-Friendly hospital increased from only 2.6% in 2014 (Illinois ranked 33 out of 50 states) to 7.8% in 2016 (Illinois ranked 40 out of 50 states) to 22.3% in 2018 (Illinois ranked 21 out of 50 states).

E. Partner with the Illinois Department of Corrections and two state women’s correctional centers to support ongoing health promotion activities for incarcerated women (including health education programs and lactation support) and prison staff training (same as strategy #1-B).

See Women’s/Maternal Health domain strategy 1-B narrative for details.

F. Provide support to pregnant women at risk for poor birth outcomes through an array of case management and home visiting programs through the Illinois Department of Human Services (DHS); Ensure DHS programs align with Title V priorities.

The three main DHS projects being supported by Title V in this grant period (2015-2020) are: Better Birth Outcomes, Fetal Infant Mortality Review (FIMR) and Perinatal Depression Hotline.

Better Birth Outcomes- The Illinois DHS contracts with local public health departments, community-based agencies and Federally Qualified Health Centers to provide intensive prenatal case management services, known as the Better Birth Outcomes (BBO) program, to high risk pregnant women in defined geographic areas of the state of Illinois with higher than average Medicaid costs associated with poor birth outcomes and higher than average numbers of women delivering premature infants. During FY18, 81% of women who participated in the BBO Program began prenatal care in their first trimester and 94% of the women were active in the Medicaid program as well.  BBO participants received adequate prenatal care per the Kotelchuck Index and 56% received counseling on reproductive life planning. More than half received contacts monthly during their pregnancies and 45% received a home visit in each trimester.  39% of women in BBO initiated breastfeeding.  Staff reassessed birth data to ensure the program is continuing to be offered in the areas of highest need in Illinois.

FIMR- FIMR continues to examine and identify the significant health, social, economic, cultural, safety education systems factors (non-medical) that are associated with fetal and infant mortality through review of individual cases. FIMR identifies fetal deaths (infants born dead after the 20th week of gestation) and neonatal deaths (any live born infant regardless of gestational age and weight) who die within the first 28 days of life. Through the interviews with families who recently experienced a fetal loss, several challenges were identified including: Inconsistent medical advice regarding inter-conceptual care and community changes impacting health (increase in community violence, gentrification in some communities, decreased rates of employment opportunities and closing of local schools). The University of Chicago is responsible for administering the FIMR program and reviews death occurring within the city of Chicago. During FY18, 39 cases were reviewed.

Postpartum Depression Hotline- Postpartum women in Chicago who experience signs & symptoms of postpartum depression can access Healthcare Alternative Systems to utilize pertinent services to improve and support positive mental health. Postpartum depression is an important public health issue and ongoing priority in Illinois. Almost one in five Illinois resident women who deliver a live birth in the state will experience postpartum depression. Roughly two-thirds of those women will be diagnosed, and only 22% will receive some form of treatment. During FY18, 289 women were referred through different health facilities and treated for a duration of 6-9 months. Some services that were utilized include Cognitive Behavior therapy (CBT), Psychodynamic therapy, and Rationale Emotive Behavior therapy (REBT).

G. Distribute information on topics related to health in pregnancy to women through service providers and social media.  Utilize materials from IL CHIPRA and leverage existing public awareness campaigns, such as Text4Baby and Connect4Tots.

The bulk of these activities are resulting from the state’s Pre and Inter-conception COIIN workgroup. The goal of this workgroup is to promote optimal women’s health before, after and in between pregnancies, during postpartum visits and adolescent well visits. Beginning in FY18, the main facilitation of this workgroup was transferred to EverThrive Illinois through a grant agreement partially funded by Title V. The restructured team began meeting in the late summer of 2018 and has thus far created a logic model and is exploring ways in which to best execute activities such as revising and relaunching the Perinatal Education Toolkit, developing and launching a preconception health awareness campaign and improving the well-woman visit by creating a model risk assessment and piloting it with a set of health care providers.  This group reviewed the Perinatal Toolkit and provided input in order to complete a comprehensive toolkit update.

Through this partnership with EverThrive Illinois, healthy pregnancies were supported via presentations, events and communications. The activities include the following:

• Maternal and Child Health (MCH) Family Council meetings, particularly regarding experiences with racial disparities related to infant and maternal mortality and morbidity.
• Transfer of the infant mortality (IM) Toolkit to their website for revision and maintenance. The toolkit launch occurred in September 2018, in honor of Infant Mortality Awareness month.  
• Completion of an inventory of links and resources in the Perinatal Toolkit's education matrix

Through their Title V Mini Grant, the Chicago Department of Public Health (CDPH) continued the Know and Go campaign to encourage early entry into prenatal care. The campaign includes a location finder for those seeking prenatal care or any other perinatal resources and was shared over social media. CDPH continues to update and support www.HealthyChicagoBabies.org  and the resource page. The website is easier to navigate and is tailored to both providers and Chicago residents.

H. Provide home visiting services to families with newborns identified in the Adverse Pregnancy Outcome Reporting System (APORS) through the IDHS High-Risk Infant follow-up program.

Surveillance of adverse pregnancy outcomes began in Illinois in 1986 with the establishment of the Adverse Pregnancy Outcome Reporting System (APORS) -- the Illinois birth defect registry -- housed in IDPH Division of Epidemiologic Studies. APORS has a two-fold purpose: 1) collection of adverse pregnancy outcomes for surveillance, policy development and research; and 2) referral of high-risk newborns for community-based follow-up services. Hospitals are required to report babies meeting APORS case conditions within 1 week of their discharge from hospital. Since 2002, APORS staff has been reviewing medical records to verify and further identify selected birth defects.  To this end, hospitals make electronic medical records available through remote computer access or by providing the charts on paper or electronic media.  Charts must be requested for most hospitals; most are available within two weeks, while a few can take up to two months.  The chart of every baby reported with one of the selected birth defects, or with certain risk-factors for one of the selected birth defects is reviewed and every birth defect described in the chart is selected. The APORS program routinely uses birth and death certificates to identify APORS cases that may have been missed by hospital reporters.  In addition, all cases are linked to birth certificates and where applicable, death certificates. 

The High-Risk Infant Follow-up Program is a case management program administered by the Illinois Department of Human Services. Based on eligibility established by APORS, public health nurses in local health departments provide follow-up home visiting services. There is a direct connection between high risk follow-up and numerous programs such as WIC, Primary Care, Early Intervention, Perinatal Follow-up and others depending on the needs of the family. Infants are followed until 24 months of age unless a complete assessment and the professional judgment of the nurse case manager indicate that services are no longer needed. In FY2018, 351 High-Risk Infant Follow-Up participants were active in a given quarter.

I. Support the Illinois Home Visiting Task Force in the design and implementation of Illinois Family Connects to offer universal home visiting to determine family support needs and refer them to appropriate services.

Currently, the Illinois Title V Program supports home visiting in two main ways. The first is that the Title V Director participates on the Illinois Home Visiting Task Force, which is coordinated by the Ounce of Prevention Fund and is a standing committee of Illinois’ Early Learning Council. This task forces consists of approximately 200 members representing state agencies and private sector health, early childhood and child welfare organizations, as well as providers, researchers, and advocates.  The task force works with the Governor’s Office of Early Childhood Development to continue to advance the quality, quantity, and coordination of home visiting services across the funding streams and relevant departments and serves as the strategic advisory body for the MIECHV grant.

The second is through continued support of a universal home visiting program. The Universal Newborn Support System Pilot was coordinated by the Ounce of Prevention Fund and was championed by former Illinois first lady Diana Rauner, who co-chaired the Illinois Home Visiting Task Force since 2009. The pilot included two working pilot sites in Illinois where every woman receives a home visit to assess maternal and child health and well-being after baby is born. One was in Stephenson County (Memorial Hospital in Freeport, IL) and one was in Peoria.

This pilot has morphed into the Illinois Family Connects program. This is a community-based, universal program for parents of newborns, regardless of income or socioeconomic status.  The support includes wellness checks for the baby and family and help to identify and connect with supportive resources from which any new family may benefit. Recently, the Illinois Family Connects model has been adopted by the Chicago Department of Public Health (CDPH) for implementation in the City of Chicago beginning in 2019. CDPH continued to work on the development of a blueprint for a plan to establish a coordinated, citywide, centralized intake system for all pregnant women and children 0-2 years of age. This effort will work to connect families to appropriate services (including early childhood) and reduce duplication of services.

J. Through the CoIIN Safe Sleep workgroup, create a safe sleep toolkit that provides educational information to hospitals, home visiting agencies, childcares and other organizations on developing evidence-based safe sleep policies.

The goal of this team is to improve safe sleep practices statewide. The Illinois Safe Sleep CoIIN Team has worked together to develop and distribute a statewide hospital survey to all birthing hospitals and pediatric hospitals that also care for infants under the age of one year, to assess the implementation of a safe sleep policy. Work is underway reviewing safe sleep education for hospital emergency department staff in Illinois. In training hospital staff, the team works to put the burden of teaching infant safe sleep recommendations, on the staff.  The recommendations are based on the American Academy of Pediatrics (AAP). Findings thus far are that while the teaching styles are different, the message stays constant. The team is also currently working on the development of an educational safe sleep tool kit as well as programs for home visitors to teach safe sleep. The main facilitation of this workgroup was transferred to EverThrive Illinois through a grant agreement partially funded by Title V.

K. Participate in IDPH Zika Action Team to develop state readiness plan emphasizing needs of MCH populations. Ensure public messaging includes information related to pregnancy prevention, distribute educational materials to partners, and support APORS in enhancing microcephaly surveillance (completed in FY17).

This strategy was completed in FY17 – there are no activities to report for FY18.

L. Collaborate with DPH Lead Prevention Program and other partners on the CoIIN- Maternal and Child Environmental Health workgroup to update screening questionnaire, guidelines, and resources on lead exposure for pregnant women (started in FY18).

Illinois is participating in a cross-disciplinary Maternal and Child Environmental Health Collaborative, Improvement and Innovation Network (CoIIN) to reduce infant mortality and morbidity by addressing lead exposure during pregnancy. The goal is for all pregnant women in Illinois to be assessed for lead exposure risk during pregnancy. IDPH Title V Program staff are working with IDPH’s Environmental Health and Lead Prevention Programs to create and update educational materials for pregnant women, revise the prenatal risk assessment and screening guidelines, and determine the prevalence of blood lead testing among pregnant women in Illinois. Ultimately, the CoIIN team will provide training to maternal care providers to raise awareness of these materials and increase completeness of blood lead testing to the state. During FY18, IDPH Title V Program staff participated in routine meeting for the CoIIN, provided clinical expertise in reviewing materials and assisted in the creation and deployment of a survey to OB/GYNs around knowledge and lead screening practices within two high risk areas of the state for childhood lead exposure.

M. Ensure population- based metabolic and hearing screening for Illinois newborns.  

Universal newborn blood spot screening is offered through IDPH Newborn Screening Section. All Core RUSP conditions are included in the Illinois newborn screening panel. When including duplicate samples for children requiring secondary testing and follow-up, a total of 168,542 newborn blood spot screening specimens were processed for 2018 births. For the deliveries occurring in 2018, 139,873 out of 141,065 (99.2%) infants born in Illinois hospitals received at least one screening. Of those with a screening, 5,504 (3.9%) had a presumptive positive screen for at least one of the Core RUSP conditions and were referred for further testing. Of those referred for testing, 194 (3.5%) were confirmed as a case for at least one Core RUSP condition and were referred for treatment. Newborns diagnosed through newborn screening are followed annually through fifteen years of age with staff of the Newborn Screening Program contacting the pediatric sub-specialist to verify compliance with treatment and to monitor growth and developmental milestones. If needed, cases are referred to a local public health nurse to provide family assistance. Currently, no screening data or reports of diagnosed cases of newborns with a critical congenital heart defect are reported to the Newborn Screening Program, however families of all newborns with such a diagnosis are reported to the Adverse Pregnancy Outcomes Reporting System (state birth defects registry), which provides periodic follow-up by a public health nurse, through two years of age.

Universal hearing screening is offered through IDPH Early Hearing Detection and Intervention (EHDI) Program to infants born in Illinois hospitals. During 2018, 138,655 out of 140,452 infants reported to the EDHI program received at least one hearing screening as an inpatient prior to hospital discharge. Of those screened, 5,737 (4.1%) were positive presumptive screens that were referred for further testing. Of those referred for further testing, 265 (4.6%) were confirmed cases. All newborns identified with a hearing loss are referred to early intervention services and to the state Children with Special Health Care Needs Program (through UIC-DSCC) which provide ongoing follow-up services.

CDPH worked in partnership with the UIC-DSCC to provide nursing staff training on using OAE portable hearing screening machines. CDPH nurses will now do home visits and follow-up on children who failed their hearing screening upon discharge from the hospital at birth who did not return for follow-up.