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The Role of Substance Use in Birth Defects Surveillance

Posted By Luigi Garcia-Saavedra, MPH, Whitney Coffey, MA, Elizabeth McCarthy, MA, Wednesday, January 29, 2020
Updated: Tuesday, January 28, 2020

Birth defects (also known as congenital anomalies or congenital disorders) are structural or functional anomalies that occur in utero and are both common and costly. They may be inherited or environmentally induced. Identification of birth defects may occur prenatally, at birth, or much later in life (e.g. renal agenesis).

In the U.S., some estimates indicate one in every 33 babies born each year has a birth defect. Some birth defects can have a minimal impact on quality of life, whereas others are more severe and contribute to long-term disability. Not only are individuals with birth defects impacted, but so too are their families, health care systems, and societies.


Where the cause of the birth defect is known, prevention strategies have been developed to reduce risk. Avoiding use of harmful substances is one such strategy and continuous opportunities to connect a pregnant woman to services and prevention education exist. CDC defines Fetal Alcohol Spectrum Disorders (FASDs) as ‘a group of conditions that can occur in a person whose mother drank alcohol during pregnancy. These effects can include physical problems and problems with behavior and learning. Often, a person with an FASD has a mix of these problems.’ Though etiology of this condition is well known, data from the 2015-2017 Behavioral Risk Factor Surveillance System (BRFSS) showed that 11.5% of pregnant women reported current drinking.  


Alcohol is only one of the substances newborns may be exposed to in utero with negative impacts. Neonates exposed to opioids, benzodiazepines, and barbiturates (OBB) in utero who experience withdrawal signs and symptoms have Neonatal Abstinence Syndrome (NAS).  


Recently, the CSTE NAS Standardized Case Definition (NAS-SSCD) was developed through a cooperative partnership. The CSTE NAS Workgroup includes representatives from state and local public health jurisdictions, CDC, and other partners. Ratified by the Council in June 2019, this tool aims to serve as a primary resource for comparative assessment of jurisdictional and longitudinal trends in NAS by establishing uniform classification guidance. NAS-SSCD includes a tiered case definition to be applied in both provider-reported clinical documentation and administrative data. This resource will allow for better understanding of the incidence and burden of NAS, as well as monitoring for long-term effects. Additionally, standardized surveillance will facilitate the assessment of the needs of the mother-infant dyad before, during, and after pregnancy. 


In Missouri (MO) and New Mexico (NM), NAS-SSCD has been used to align reporting of NAS cases. Stakeholder education surrounding the motivation and aims of NAS-SSCD continues. Further, the 2018 MO birth defect surveillance pilot (which included NAS) indicated the many benefits of active surveillance of birth defects and perinatal conditions of interest. As a result, MO’s birth defect surveillance system will incorporate NAS as a condition of interest for future analyses due to the condition originating from in utero exposure, similar to FASDs. 


Surveillance on birth defects, in utero exposures, and behaviors associated with birth outcomes is a useful tool to inform prevention programs. However, surveillance is most effective when coupled with the provision of services to affected families. A proposed CSTE policy brief associated with NAS-SSCD, which outlines avenues for resource planning and allocation for these services, is in development. 


Presently, the NM Birth Defects Prevention and Surveillance Program (NMBDPSP) and Children’s Medical Services (CMS) have been partnering to connect services to families diagnosed with any birth defect and, more recently, with NAS. NMBDPSP surveillance and data sharing between agencies creates a systematic approach to assure that each family is given information about resources available to them and that they have access to the medical and social services they may need. This collaboration increased the percentage of birth defect-impacted families receiving services from around 50% (in 2017 when the collaboration began) to approximately 70% by 2018.


Another important birth defect-related activity, in addition to surveillance and provision of services, is education of the general public and care providers. Creation and dissemination of messaging containing not only basic health care information, but also prevention advice, research updates, and resource guides are vital. These products can enable self-efficacy in communities affected by adverse birth outcomes. The NMBDPSP is developing these types of educational materials for families with information on specific conditions (with a focus on substances such as tobacco, pain medications, and alcohol). New birth defect surveillance analyses findings in MO will be added to existing public-facing dissemination resources.


During National Birth Defects Prevention Month, it is important to remember that an area encompassing many diverse birth outcomes requires a diverse group of people working together to improve the quality of life of all of those affected. 


CSTE’s Neonatal Abstinence Syndrome (NAS) Workgroup was formed in 2017 to better understand how states define and operationalize NAS and to develop a standardize surveillance case definition. The workgroup developed and conducted an NAS Definition Environmental Scan to understand the current ways in which NAS is defined and used the data to develop the NAS Standardized Surveillance Case Definition Position Statement, which was passed at the 2019 CSTE Annual Conference.


About the authors - Luigi Garcia-Saavedra, MPH, is a Birth Defects Epidemiologists Supervisor for the New Mexico Department of Health and CSTE NAS Workgroup Co-lead; Whitney Coffey, MA, is a Research Analyst for the Missouri Department of Health and Senior Services and CSTE Workgroup Co-lead; Elizabeth McCarthy, MA, is a Research Manager for the Missouri Department of Health and Senior Services.

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