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Rhode Island Birth Defects: Let's Lower the Risk
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What are Birth Defects?
Each year in Rhode Island, approximately 400 babies are born with a birth defect. Birth defects are structural changes present at birth that can affect almost any part of the body. They may affect how the body looks, works, or both. A doctor may find a birth defect before birth, at birth, or any time after birth. The cause of most birth defects is unknown. Many times, birth defects have more than one cause. Some things that we know can increase the risk of a child having a birth defect are drinking alcohol or smoking during pregnancy; having a family member with a birth defect (genetics); having uncontrolled medical conditions, such as diabetes; taking certain medications; and being exposed to chemicals in the environment.
Rhode Island Birth Defects Program
Early identification of birth defects and access to services can result in better outcomes as the child gets older. This may include having fewer and shorter hospital stays. Tracking birth defects in Rhode Island is essential for the development of programs and policies that can reduce birth defects and infant mortality. At the Rhode Island Department of Health (RIDOH), the Rhode Island Birth Defects Program (RIBDP) identifies children with birth defects; assures that these children receive appropriate preventive, specialty, and other healthcare services; and monitors trends over time. All information collected by the RIBDP is confidential and is protected under state and federal privacy laws.
All healthcare providers are mandated by regulation to report cases of birth defects identified among children born to Rhode Islanders, up to age five, to the RIBDP. The reporting of birth defects cases helps the RIBDP assure that these children receive appropriate services and referrals on a timely basis and helps identify children who were not diagnosed with a birth defect at the time of birth. The RIBDP works with all five birthing hospitals and Hasbro Children’s Hospital to capture birth defects diagnoses at and after birth. The RIBDP confirms the accuracy of reported birth defects diagnoses through chart review and follows birth defects surveillance guidelines developed by the National Birth Defects Prevention Network (NBPDN).
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In the United States, a baby is born with a birth defect every 4.5 minutes.
Birth Defects Prevalence
Although there are variations in birth defects rates from year to year, the overall rate has not changed much since 2002. From 2018-2022, among 51,459 babies born among Rhode Island residents, 2,231 (4.3%) had at least one birth defect. The most frequently reported birth defects are those related to the cardiovascular system followed by the genitourinary and musculoskeletal systems.
Source: Rhode Island Birth Defects Program
Maternal Risk Factors
Babies born to older women (aged 35 or older), women with less than a college education, single women, and women with publicly funded health insurance were at a higher risk for birth defects.
Source: Rhode Island Birth Defects Program
Racial/Ethnic Disparities
During 2018-2022, non-Hispanic Blacks/African Americans and Hispanics had higher birth defects rates than non-Hispanic Whites and non-Hispanic Asians. Rates for non-Hispanic White and non-Hispanic Asians were lower than the RI rate.
Source: Rhode Island Birth Defects Program
Geographical Disparities
Babies born to residents of core cities where the poverty level is higher than 25% (Central Falls, Pawtucket, Providence, and Woonsocket) were 1.1 times more likely to have a birth defect than those born to residents living in the rest of the state.
Source: Rhode Island Birth Defects Program
Birth Defects Prevention
Although not all causes of birth defects are known, there are many things a woman can do before and during pregnancy to reduce the risk of having a baby with a birth defect. These include:
- Seeing her healthcare provider and maintaining regularly scheduled visits
- Talking to her healthcare provider about maintaining a healthy weight
- Talking to her healthcare provider about medications she is taking, including over the counter, dietary, prescription and herbal medicines
- Taking 400 mcg of folic acid daily: vitamins and 100% fortified cereals
- Controlling chronic conditions, including diabetes, high blood pressure, obesity, and epilepsy
- Stopping smoking, drinking, and using cannabis or illicit drugs: Cigarettes and/or e-cigarettes can cause birth defects, low birth weights, and infant death. There is no safe amount of alcohol to drink during pregnancy. Use of cannabis or illicit drugs can lead to preterm birth, low birth weight, and birth defects.
- Avoiding toxic substances: Avoiding fertilizer, bug sprays, and cat or rodent feces, as these can hurt a women's reproductive system
- Avoiding getting infections while pregnant by practicing good hygiene; getting vaccinated; preventing insect bites; cooking meat and poultry to proper temperatures; and washing fruits and vegetables before eating them
There is no known safe amount, no safe time and no safe type of alcohol to drink during pregnancy.
Service Assessment and Assurance
Since 2009, the RIBDP has been conducting service assessments with families of children with selected conditions. Children with selected birth defects identified through surveillance are referred for a service assessment (via mail, online or in-person) to determine which services and referrals they have received. The results of these service assessments provide the RIBDP with information on whether children are receiving timely, necessary, and appropriate services and referrals. The RIBDP can also connect families with local resources and services based on what is learned during the service assessment. The RIBDP has conducted more than 1,500 new and follow-up service assessments to date.
Service assessments are currently conducted with families of children who have Down Syndrome, spina bifida, craniofacial defects, critical congenital heart defects (CCHD), abdominal wall defects, hearing loss, and microcephaly or other central nervous system conditions.
Findings from Service Assessments
The RIBDP recently evaluated educational, developmental, and family support service referrals reported by families of children with congenital hearing loss, which is one of the conditions for which we conduct service assessments. This includes auditory neuropathy, conductive hearing loss, and sensorineural hearing loss. From 2017 to 2023, 37 families completed service assessments, and 18 of these families (49%) completed more than one assessment. Most assessments were completed via a mailing.
Source: Rhode Island Birth Defects Program
For family support services, the highest referral rates were for RIPIN (65%). There were fewer referrals to VNA/Home visiting (27%) and parent support groups (14%). Families were more likely to receive parent support group services (100%) once referred. Of all families who received support services, families found Medicaid assistance (100%) and parent support groups (100%) most helpful.
Source: Rhode Island Birth Defects Program
Families eligible for developmental and educational services were most likely to be referred to Early Intervention (89%). Families were least likely to receive referrals to the Children’s Neurodevelopmental Center (CNDC) at Hasbro Children’s Hospital (30%). Those referred to Special Education (100%) and Early Intervention (91%) were very likely to receive these services. Overall, families who received Special Education (100%) services found them helpful.
The RIBDP will continue to use service assessment data to monitor service and referral gaps, identify ways to improve access to services, and educate providers and families on available services and the value of these services.
Supports and Resources in Rhode Island
Families of children with a birth defect may need supports and services for their children. The RIBDP provides information and referrals for families who need additional assistance with acquiring those supports. Financial assistance, parental and online support groups, community organizations, and educational and developmental services are some of the supports and services that may be needed by families.
Data Dissemination and Partnerships
The RIBDP shares data through many mechanisms, which include publishing studies in peer-reviewed journals; presenting information at local, state, and national meetings; and maintaining an up-to-date website. Sharing data and information on birth defects can increase awareness of birth defects and lead to program enhancements and policy development.
The RIBDP will continue to increase its visibility in the community by publishing Rhode Island-specific data and sharing information at meetings with partners and in the community. Additional information will be added to our website, as needed.
Future Directions
The RIBDP will continue to use its surveillance and service assessment data to inform policy, build partnerships to broaden program reach, and increase utilization of health, developmental, and educational services by children with birth defects and their families. This will ultimately lead to improved birth and health outcomes for Rhode Islanders.
An area the RIBDP has recently added to its surveillance is neonatal abstinence syndrome (NAS). NAS is a group of conditions that occur when a newborn is exposed to addictive drugs (opioids, benzodiazepines, or barbiturates) in the mother's womb and experiences withdrawal after birth. In October 2019, NAS become reportable to the RIBDP. The program is currently conducting surveillance by using hospital discharge records, similar to the process used for birth defects reporting. The RIBDP is working with the SEN Task Force’s Data Group to explore how the RIBDP’s surveillance can inform services provided to families affected by NAS.