NPM 3 - Percent of very low birth weight (VLBW) infants born in a hospital with a Level III+ Neonatal Intensive Care Unit (NICU)
ESM 3.1 - Percent of delivering hospitals convened at a meeting to share data and discuss the Alabama Perinatal Regionalization System Guidelines
ESM 3.2 - Number of steps of the CDC's Level of Care Assessment Tool (LOCATe) process completed in order to design and align the Alabama Perinatal Regionalization System Guidelines with the national criteria for the maternal levels of care
VLBW infants (1,500 grams or 3.25 pounds) are the most fragile newborns with a risk of death over 40 times higher than that of normal birth weight infants (greater thanor equal to 2,500 grams or 5.5 pounds). In Alabama, although they represented less than 1.7 percent of all births in 2022, VLBW infants accounted for 154 deaths out of a total of 391 infant deaths, or 39.4 percent of all infant deaths. VLBW infants are significantly more likely to survive and thrive when born in a facility with a Level-III NICU, a subspecialty facility equipped to handle high-risk neonates. In 2022, there were 841 VLBW infants born in a hospital with a Level III or above NICU out of a total of 967 VLBW births in Alabama. That was 87.0 percent of the VLBW births delivered in Level III or above NICUs in Alabama, and a 9.4 percent increase in the rate from 77.6 percent in 2021.
ADPH has completed its collaboration with AlaHA to focus on infants delivering at the appropriate level of care. More than 50 percent of hospitals participated in defining their neonatal level. A new collaboration has started with AlaHA to focus on LoMC. A workgroup is being formed with staff from representative delivering hospitals and AlaHA to explore how we will strategize the implementation of regionalized risk-appropriate maternal care. AlaHA will encourage hospitals to complete the LoMc tool. With LoMC defined, facilities can identify and address gaps in capabilities and personnel to align with national standards. Regions and health systems can then examine the capabilities of their facilities and define criteria for care locally allowing for designated transfer of care based on risk.
NPM 5 - Percent of infants placed to sleep on their backs
ESM 5.2 - Number of sleep-related infant deaths
The three commonly reported types of SUID include SIDS, unknown cause, and accidental suffocation and strangulation in bed. These deaths often occur during sleep or in the infant’s sleep area. In 2022, there were 105 SUIDS out of 391 total infant deaths. That was 26.9 percent of the total infant deaths in Alabama, which was a 4.1 percent increase in SUID from 22.8 percent in 2021. ADPH continues to address SUID through safe sleep education, training of medical personnel and community workers, and distribution of cribs to families without a safe sleep environment. The FIMR coordinators were able to provide 24,786 Safe Sleep books for many of the delivering hospitals throughout the state. This was an increase by almost 10,000 from the previous reporting period.
The FIMR Program has helped promote the availability of free portable cribs through the Cribs for Kids Program to a variety of family service providers, including ACHN maternity care coordinators, Blue Cross Blue Shield of Alabama’s Baby Yourself Program, nurses, labor and delivery nurse managers, and hospital case managers. In FY 2023, over 724 cribs were distributed to families statewide who lacked a safe place for their infant to sleep. This was more than twice the increase from the previous year. When a family receives a crib through the Cribs for Kids Program, they are contacted no later than 3 weeks after receipt for an interview regarding the use of the crib and safe sleep practices, and again no later than 8 weeks to see if the crib is being used appropriately. In FY 2024, funding will allow for diapers to be bought and given to parents once the interviews are completed.
PHD also worked in FY 2023 to bring attention to the tragedy of sleep related deaths through a partnership with state colleges and other state partners for the Clear the Crib challenge. UA and AU participated along with several ADPH staff. This challenge focused on the baby’s sleep surface, which should be firm, flat, and should not be shared with others. The Clear the Crib challenge was shared on all ADPH social media sites as well as the universities’ social media platforms. Monthly educational moments pertaining to pregnancy are shared on the ADPH PHD webpage and all social media platforms.
Ongoing activities in Alabama to improve birth outcomes and reduce morbidity and mortality:
Fetal/Infant Mortality Review
Regional perinatal nurses continue to present de-identified case summaries to our Regional Perinatal Advisory Committee (RPAC) case review teams for discussion. These teams are made up of regional professionals from law enforcement, medical providers, social workers, coroners, DHR, and AMA. The teams discuss the cases, the contributing factors, and make recommendations to prevent similar tragedies in the future. The region-specific recommendations are brought to the cross-sector Community Action Teams (CATs) for implementation. The FIMR team is transitioning to the National FIMR data base for FY 2024.
State Perinatal Advisory Committee
SPAC brings together professionals from across sectors in the perinatal domain statewide at quarterly meetings where guest speakers provide information related to perinatal topics, relevant state agencies give updates regarding services to pregnant women and infants, and one perinatal region is spotlighted to give updates on trends they are seeing in fetal/infant deaths and the implementation of community initiatives.
Breastfeeding
WIC breastfeeding staff and PHD staff work closely with community partners to identify resources that support breastfeeding families and to find new ways for connecting families with those resources. FIMR partnered with PRAMS to identify issues related to breastfeeding. This will lead to a Frequently Asked Questions sheet being developed to go into the health care provider offices to assist moms with issues associated with breastfeeding. The Wellness Coalition and FIMR will be partnering together in the upcoming months to provide a quality initiative for pediatricians to make their offices breastfeeding friendly.
Collaborating Partners and Initiatives for the MCH Populations
Count the Kicks
Count the Kicks, developed by the non-profit organization Healthy Birth Day, Inc. is on a mission to improve birth outcomes through programming, advocacy, and support while reducing racial disparities that persist. Count the Kicks helps save babies from preventable stillbirth, prevents preterm births, and improves outcomes for moms. CDC lists a change in a baby’s movements as one of its 15 urgent maternal warning signs. Count the Kicks is an evidence-based stillbirth prevention program that provides educational resources to health care providers and expectant parents. In conjunction with the parental education, Count the Kicks offers a free kick-counting app to monitor the quantity and strength of a fetus’ kicks beginning in the third trimester. This hallmark tool is available in 16 languages.
In FY 2023, 219 health care professionals and community workers placed orders for Count the Kicks educational resources. Through these orders, there were 67,559 Count the Kicks materials such as brochures, app reminder cards, and posters mailed out in Alabama. Also, app users increased by 43 percent in 2023 and 91 health care professionals and community workers attended a Count the Kicks webinar. During CY 2023, there were a total of 919 Count the Kicks app users.
While its utilization in many states’ perinatal programs has been ongoing for some time, the introduction into the dental arena was undertaken for the first time by OHO in Fall 2022.
Count the Kicks materials were mailed to 1,500 dental offices throughout the state. These promotional packets included a cover letter describing the program, along with Count the Kicks marketing posters, refrigerator magnets, and educational brochures for pregnant women. Dental providers were able to order free Count the Kicks oral health bundles throughout the year.
In 2023 a proclamation was signed by Alabama Governor Kay Ivey declaring December as Count the Kicks Month in Alabama. A representative from Healthy Birth Day, Inc. travelled to Alabama to take part in the proclamation signing ceremony. Also represented were ADPH, the Board of Dental examiners, Alabama’s Count the Kicks Ambassador and the family of an Alabama Baby Save. Read Baby Aspen’s full story on countthekicks.org
Five additional states have followed Alabama’s lead in the indoctrination of dental professionals in the prevention of stillbirths, creating a perfect example of an effective medical-dental integration.
Babypalooza
In 2023, Alabama held Babypalooza events in three of its largest cities, Birmingham, Mobile, and Montgomery. For the second year in a row, FHS was a sponsor for Babypalooza. There were over 5,000 in attendance. OHO educated attendees on the importance of oral health during pregnancy, having potential implications in terms of pre-term births and low birth-weight babies, both of which can contribute to infant mortality. The attendees were informed and educated on Count the Kicks in an effort to promote awareness of consistent movements of an unborn child during pregnancy as it relates to possible distress of the child and stillbirth potential.
Attendees were also awarded incentives for participating in an educational game whereas large dice-shaped cubes were rolled, revealing an oral health versus pregnancy question which, when answered, allowed the participant to select from a number of oral health products.
Staff from PHD presented education on safe sleep, the benefits of breastfeeding, the importance of prenatal care, birth spacing, and information about eligibility for a free crib through our Cribs for Kids Program. Games were played with questions for parents and incentive items were given to promote the topics discussed.
Alabama Perinatal Quality Collaborative (ALPQC)
ALPQC has been working closely with providers and hospitals to implement AIM Patient Safety Bundles on Hypertension, Post-partum hemorrhage and Hypothermia in premature infants. PHD staff serve on the steering committee of ALPQC. Staff from ALPQC serve on various workgroups and committees lead by ADPH.
March of Dimes
The PHD Director is a participant in the MOD workgroups on policy, services, and support related to substance abuse disorders for pregnant women and new mothers. MOD has recently obtained funds from the Alabama legislature for FIMR CATs. These funds will be used to show awareness of safe sleep education by the use of billboards across the state. Car seats will be distributed to hospitals in the southern region of the state for families that don’t have the resources for a car seat to take their baby home from the hospital. Incentive items will be purchased to share with parents at educational events to include Babypalooza, which will impact thousands of families in the Mobile, Birmingham, and Huntsville areas.
Increasing Access to Prenatal Services
In FY 2023, labor and delivery services closed at three hospitals in Alabama. Forty-four delivering hospitals remain in our state’s sixty-seven counties. Only 16 of the 54 counties considered rural have hospitals providing obstetrical care. At least 25 Alabama counties do not have obstetricians, gynecologists, family practice physicians, or NPs who deliver babies who work in those counties. In FY 2024, ADPH is pursuing ways to increase access to prenatal care in maternity care deserts utilizing our CHDs. Counties will be based on the lack of delivering providers or hospitals, infant mortality rate, and the number of VLBW babies.
State of Alabama Infant Mortality Reduction Plan
The final year of the SAIMRP was FY 2023, ending on September 30, 2023. Many activities of the SAIMRP have been integrated into the above report. Below is a summary of activities not reported elsewhere.
Safe Sleep
DHR continued its digital ad campaign in FY 2023 targeting digital ads on Google and Facebook that directed viewers to the website and added a video ad campaign. Across all platforms, safe sleep ads were viewed 28.6 million times with almost 19,000 clicks to view the website.
Screening, Brief Intervention, and Referral to Treatment
SBIRT is an evidence-based strategy, led by DMH, promotes the screening of women before, during, and after pregnancy for substance use, depression, and intimate partner violence. In screening these women, the hope is to identify potential issues before they are exacerbated. This type of routine screening has been repeatedly recommended by MMRC as a result of the substance use and mental health related deaths of mothers that they have reviewed. The VitAL team at UA’s School of Social Work was hired by DMH as subcontractors. In FY 2023, the focus was on developing training modules for health care providers in addition to training social workers and care coordinators with ADPH and the ACHNs.
First Teachers
The Home Visiting Strategy, led by DECE, selected GOL as a subcontractor in FY 2023 using NFP in all three pilot counties. NFP has baccalaureate-prepared registered nurse home visitors that follow first-time expectant families through the baby’s second birthday. In FY 2023, they served 160 families.
Prematurity Prevention
Group Prenatal Care was selected in FY 2023 as a strategy to reduce prematurity in Macon County due to its lack of maternity care providers and high percentage of residents without a means for transportation. The goal was to partner with a delivering provider that would see maternity patients at the local CHD. However, shortly before implementation, the project was cancelled due to funding issues of the maternity care provider participating in the strategy.
ALL Babies
This ADPH program, which aligns with the priority need, “Lack of inadequate comprehensive, affordable health and dental insurance,” was designed to improve the health of mothers and babies by providing low-cost comprehensive health care coverage for unborn children through CHIP. ALL Babies provides insurance coverage to pregnant women who do not qualify for Medicaid or CHIP and cannot afford private insurance. In FY 2023, the ALL Babies program expanded from 3 counties to 36 counties. The goal is to expand statewide by FY 2025.
ADPH Public Health District Initiative
East Central Public Health District
In addition to community outreach, the District MCH Coordinator partnered with the Wellness Coalition. The partnership with the Wellness Coalition has allowed the creation/placement of lactation rooms on the campus of Tuskegee University, at the Montgomery CHD, and at local churches throughout the East Central District. The coordinator also partners with the Coalition to host monthly baby depots in Macon and Montgomery Counties. The depots are a one-stop place where parents and caregivers receive information on healthy babies and healthy moms.
Jefferson County Department of Health
JCDH operates the FDO Program, with the goal of improving pregnancy and birth outcomes for the women and infants in Jefferson County. FDO is a comprehensive patient-centered program designed to educate and support expectant mothers from the first trimester of pregnancy through their child’s first year of life. FDO promotes early access to prenatal care and connects families to beneficial community resources. The patients served by FDO consist of high-risk pregnant women, their infants, and maternal partners. Emphasis is placed on low-resource, low income, under-insured, uninsured, and minority patient populations. FDO works with Connection Health to provide CHWs to achieve the program goals. Connection Health CHWs provide the day-to-day monitoring of each participant in the program. In previous studies, it was shown that the western area of Jefferson County accounted for 66 percent of burn injuries, 55 percent of bicycle injuries, and 57 percent of poisonings admitted to COA. With the use of zip code mapping, it was determined that the majority of FDO participants live in western Jefferson County.
FDO Program participants receive a baby safety shower in their third trimester of pregnancy. The goal of the Baby Safety Shower is to increase client knowledge on infant safety, thereby reducing the number of childhood injuries and improving infant mortality. Each shower is planned as a special event for the program participant, one supportive person, and all children under age 5 in the household. Baby Safety Showers are held quarterly at JCDH and last approximately 2.5 hours. During the Baby Safety Shower, JCDH staff, community partners, and first responders deliver presentations covering a variety of infant health, injury prevention, and safety topics. Participants receive education on safe sleep, breastfeeding, fire safety, gun safety, personal safety, car seat safety, stress reduction, and oral health. Also, at the conclusion of the shower, participants take home safety-related items.
At enrollment, FDO participants complete a demographic questionnaire that includes questions about infant and childhood injury risk factors currently in their homes. Also, before entering the Baby Safety Shower, participants complete a pre-test to determine baseline knowledge of injury prevention and childhood safety. When showers are held in person, simultaneous interpretation is utilized for participants with limited English proficiency (LEP). Printed information is also provided in Spanish.
Depending on the number of participants, as well as attempting to maintain cost effectiveness, some showers were held in person whereas others were held via Zoom. Break-out rooms were utilized when the FDO Baby Safety Showers were held via Zoom. This allowed the LEP participants to participate at the same time with an interpreter present. Preparation for the in-person and virtual baby safety showers included helping participants with creating email addresses to receive information about the Baby Safety Shower. This assistance was provided to 90 percent of the Hispanic clients.
In 2023, there were a total of 4 showers and 24 maternity clients participated. Since July 2018, when the first Baby Safety Shower was held, there have been a total of 23 Baby Safety Showers with a total of 263 maternity clients and 169 family members participating.
The touchless distribution drive-up was held at the local health department in order for the participants to receive the “in-kind” gifts. The safety items distributed in 2023 were Dreambaby® Household Safety Kits, diapers, safety tubs, and Graco® Pack ‘n Play playards. The Graco® playards were donated by the IMPACT Family Counseling Cribs for Kids Program. IMPACT also provided safe sleep information and demonstration during the shower. Diapers were provided by the local diaper bank and feminine products were provided by the Junior League of Birmingham.
One month after the Baby Safety Shower each participant completes a post-test to evaluate knowledge and retention of safety education provided at the shower. In 2023, the pre-test score range for each question was 75 to 94 percent, and after the shower, the post-test score range was between 94 and 100 percent.
Finally, when a participant has completed the full 18-month From Day One Program, a face-to-face evaluation is done by the CHW in the home. This evaluation includes questions about the of use of safety related items and safety knowledge received at the baby safety shower. A 6-month post-graduation phone interview and evaluation is done, by the program administrator or designee to ensure sustained safety adherence. This evaluation assesses safety knowledge and collects data on any preventable injuries sustained at home since safety shower participation.
Mobile County Health Department
From 2020 to present, the state of Alabama has had the third highest MMR in the U.S. at 36.4 per 100,000 live births according to ranking provided by CDC. Women in Alabama succumbed from pregnancy and pregnancy-related complications at twice the national rate. The fetal and infant mortality rates also rank high in Alabama with over 400 infants dying before they reach their first birthday. Data provided by marchofdimes.org indicates an infant mortality rate of 7.6 per 1,000 live births in Alabama. Contributing to the high rates include low birthweight, preterm births, birth defects, and SUID such as SIDS. The maternal, fetal, and infant mortality rates are disparagingly higher for black mothers and babies with poverty, a lack of education, and the lack of resources to receive quality maternal care among the key factors.
MCHD has a primary care division, FH, with a mobile medical unit and eight clinic sites located throughout the county. FH clinics are designated as FQHC and Primary Medical Homes. FH serves uninsured, underinsured, Medicaid recipients, and those with other forms of health insurance. MCHD has patient care coordinators to help navigate community members to various services provided at the agency.
The goal of the MCHD MCH Program is to increase awareness of factors that adversely affect the health of mothers and babies; promote and increase education and resources available to mothers living in Mobile County; and provide services to decrease the rates of infant and maternal mortality in the county and state. The MCH Program helps to encourage and promote healthy women during pregnancy, childbirth, and postpartum as well as the healthy development of infants and children. The program provides education, resources, access, and referrals to recommended prenatal and well-childcare appointments; infant and maternal mortality prevention education services; behavioral health services to address postpartum depression and other mental health concerns; newborn screenings; child immunizations; and maternal, infant, and child nutrition through WIC services. The MCHD MCH Coordinator also works with the FIMR Coordinator to provide information to mothers in recognizing key factors that may contribute to sudden infant death and maternal mortality.
Through group connection activities with the Family Support/Home Visitation Program, the MCH Program helps in social group activities with young pregnant and parenting youth and teens aged 10-19, promotes oral health and dental screenings, educates on the importance of breastfeeding through lactation services, provides education on safe sleep practices, promotes car seat safety, provides education and referrals to doula services, and encourages positive parenting in collaboration with the Fatherhood Initiative Program. Virtual safe sleep classes continued with the participants of the Family Support/Home Visitation Program. There were 20 safe sleep classes held during FY 2023. Each class participant received a portable Pack ‘n Play playard for their baby as an incentive for participating in the class. The Family Support/Home Visitation Program serviced over 80 families and children in FY 2023.
The MCHD MCH Coordinator completed trainings to acquire knowledge for parental education in the areas of childhood development, stillbirth prevention, coping skills in managing moods and stress levels, and car seat installation.
MCH program staff participated in 3 group connect activities and over 30 school and community outreach events where information, education, and resources on mental health, healthy eating, breastfeeding, car seat safety, and safe sleep, along with information on local resources, education and services, and other MCH topics were provided.
In addition to the community events and group connect activities, MCH Program staff also collaborated with the Lead Poisoning Prevention Coordinator to continue sharing information on the effects of lead to mothers who breastfeed, who work in occupations where lead levels can be high, and who have small children. Locations included day care centers, head starts, pediatric provider offices, and dentist offices.
Southeastern Public Health District
The CHS reported that the Southeastern Public Health District had an infant mortality rate of 7.6 for all 10 counties in 2020. Every county within the district experienced at least 1 infant death in 2020, with a total loss of 37 infants. According to the CHS, Henry County had an alarming rate of 12.4 per 1,000 live births, the highest in the district. Houston County was second at a staggering 11. 2 per 1,000 live births. Barbour County followed at 10.8 per 1,000 live births. Additionally, the 2022 Robert Wood Johnson County Health Rankings report revealed that Barbour County has a rate of LBW deliveries at 12 percent and Henry County has LBW deliveries at a rate of 11 percent.
In January 2023, the district introduced the SBB Safe Sleep Survey in Barbour, Henry, and Houston counties. Two district staff certified as Cribs for Kids® Safe Sleep Ambassadors identified and met with WIC recipients and gifted them tote bags containing oral health, car safety, and safe sleep educational materials and related items. The SBB survey was open to women in their third trimester of pregnancy and parents/caregivers of infants up to 4 months of age. If the ambassadors determined that a safe sleep space was needed, they submitted a referral to SPP for the pregnant mom to receive a Cribs for Kids® Cribette®. The incentive item for completing the survey included a Snoozzzette™ Cotton SleepSack from Cribs for Kids®. The zip-able blanket reinforces safe sleep practices.
During FY 2023, 246 tote bags were distributed to WIC recipients in Barbour, Henry, and Houston counties. A total of 200 surveys were completed, 110 SleepSacks were distributed, and 2 families received a Cribette®. Notable survey responses for the year include: 48 percent deny receiving any safe sleep education for baby, 72 percent believe that baby should be propped up for sleep if baby has GERD or often spits-up, 26 percent of infant sleep spaces contained dangerous items, 4 percent smoke or vape in the home, and 2 percent do not plan to vaccinate.
Other ADPH Perinatal/Infant Health Programs
Pregnancy Risk Assessment Monitoring System
ADPH has been collecting data on mothers and their newborns through the PRAMS Program since 1993. The data collected from mothers in Alabama regarding their health; maternal attitudes; and experiences before, during, and shortly after pregnancy can help identify ongoing and emerging issues and assist in developing policies and initiatives moving forward. Surveys are mailed to the mother’s home address to be completed. If a survey is not completed and returned to ADPH, contracted staff at the UAB phone the mothers to complete the survey. Incentive items are given to the mothers when the surveys are completed.
Of the 1,511 women who received PRAMS surveys in 2023, 688 completed the surveys. As of April 2024, the survey return rate was at 45.5 percent. Upon completion of the last mailing cycle, the survey return rate will be finalized at the end of June 2024. During this reporting year, data from PRAMS surveys were presented to FIMR and MMRP staff. For FIMR, the PRAMS data was used to acknowledge the factors/barriers that cause families to stop breastfeeding prior to their breastfeeding goal. For the MMRP, PRAMS data was used to understand the factors that impact maternal deaths. Additionally, the PRAMS data was presented to members of the PRAMS Steering Committee at a quarterly meeting in February 2024. In this meeting, PRAMS staff discussed the following topics: breastfeeding, access to care, and postpartum depression. The Steering Committee members consisted of volunteers throughout the state with an interest in women and infant health, including health providers, educators, and community workers. The PRAMS data will be useful in their work promoting health for women.
Moving forward, the PRAMS Program will collaborate with staff from OHO to look at survey questions related to oral health. The PRAMS Program will also continue its partnership with FIMR to produce a breastfeeding factsheet for mass distribution at delivering hospitals and community outreach. For Fall 2024, the PRAMS Program will perform a data linkage for the next MMRP Annual Report
Alabama Newborn Screening Program
ANSFD is located within the BCL. The ANSFD ensures state laws, rules, and regulations mandating newborn screening are followed. Newborn screening includes the bloodspot, hearing, and pulse oximetry screenings to detect critical congenital heart defects. In 2023, there were 7.0 full time employees (FTEs) to support newborn screening follow-up activities for all disorders tested. The ANSFD establishes protocols to ensure early identification and follow-up of infants affected with certain genetic or metabolic conditions. Early diagnosis reduces morbidity, premature death, intellectual disability, and other developmental disabilities. The program works in partnership with pediatric specialists throughout the state to ensure all babies identified with abnormal results receive timely diagnosis and treatment. The BCL is the sole provider of blood analysis of newborn screening in Alabama. The BCL screens approximately 58,000 babies annually, and approximately 150,000 specimens are sent to the lab each year for testing. The panel of testing performed allows screening for approximately 59 core and secondary disorders. The BCL also provides filter paper for screening to medical providers. The current disorder panel includes 33 core conditions of the 37 nationally Recommended Uniform Screening panel (RUSP).
In February 2001, the EHDI Program was established as a new initiative designed to ensure that every baby born in Alabama is screened for hearing loss. The goal of the program is to ensure early and appropriate hearing screening and follow-up when indicated so that infants who are deaf or hard-of-hearing are identified as early as possible and receive timely diagnosis and intervention. In 2008, NBHS became mandated by public health law. The EHDI Program collaborates with FHS social workers to provide care coordination services to any baby who does not pass the NBHS at birth. The Alabama Care Coordination Program (ACCP) provides case management services including coordinating appointments, assisting with insurance, providing transportation, and resources as needed to families. Currently, BCL funds social work staff with FHS at 2.45 FTEs to provide care coordination services to NBS referrals. Additionally, EHDI contracts with AU, Department of Speech, Language, and Hearing Sciences, to fund three audiology graduate student interns to support hearing activities. The EHDI Program is supported by two federal grants provided by CDC and HRSA.
In 2023, the ANSFD received 3,601 lab, hearing, and heart defect referrals requiring follow-up. Of the 3,601 babies requiring follow-up, 201 were identified with a disorder.
ANSFD mandates initial newborn blood screening to be collected at 24-48 hours of age with a second screen highly recommended as best practice at 2-6 weeks of age to detect delayed thyroid evaluations. The majority of pediatric providers collect a second NBS between 2-6 weeks of age. In addition, the ANSFD notifies providers if an infant had an initial unsatisfactory NBS.
ANSFD seeks to expand relationships with other health professionals in the state, including hospitals and pediatricians, to enhance existing services, and ensure objectives are met. Additionally, there are six Community-Based Sickle Cell Associations that provide counseling services for children identified with sickle cell disease and sickle cell trait. The EHDI Program collaborates with the National Center for Hearing Assessment and Management to ensure that all infants with hearing loss are identified as early as possible and provided with timely and appropriate audiological, educational, and medical intervention. In addition, the program collaborates with ADRS including EI Services and CRS services to ensure all infants with hearing loss are identified by 3 months of age and enrolled in EIS before 6 months of age.
ANSFD partners with the UAB, Sparks Clinic to provide a grant to supplement metabolic foods and formula for infants identified with an inborn error of metabolism. In addition, the program contracts with seven medical consultants connected with diagnostic centers throughout the state who provide comprehensive diagnostic services and medical treatment. One diagnostic center provides confirmatory testing and treatment to newborns who are identified with a NBS condition. Children diagnosed with sickle cell disease receive consultation with a board-certified pediatric hematologist at one of three regional pediatric hematology treatment centers. Children diagnosed with cystic fibrosis are referred to an accredited Cystic Fibrosis Care Center, which provides comprehensive cystic fibrosis care and treatment.
ANSFD has an active advisory committee that consists of professionals and citizens knowledgeable in the area of NBS. The Alabama Newborn Screening Advisory Committee provides advice to the ADPH on issues relative to newborn screening and meets twice a year.
In 2023, the Administrative Code, Chapter 420-10-1: Care and treatment of infants identified through the Newborn Screening Program, was amended to add X-linked Adrenoleukodystrophy and adenosine deaminase severe combined immunodeficiency. Testing was implemented for both conditions on March 13, 2023. Additionally, lysosomal storage disorders were added to the panel with anticipated implementation in 2024.
ANSFD maintains a website for access to information for parents and health care professionals. The website includes information on news and events, frequently asked questions, parent information and resources, hearing information and resources, practitioner information and resources, disorder descriptions, rules and laws, brochures and education material, and newborn screening education resources. The website is found at the following link https://www.alabamapublichealth.gov/newbornscreening/index.html.
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