{"doi":"10.1002/bdr2.1972","title":"Prevention and awareness of birth defects across the lifespan using examples from congenital heart defects and spina bifida","abstract":"The emergence of birth defects programs in the United States accelerated in the 1970s and 1980s due to recognition that the use of the drug thalidomide during pregnancy resulted in fetal abnormalities (McBride, 1961; Smithells, 1962) and concerns around environmental exposures, such as Agent Orange exposure during the Vietnam War (Erickson et al., 1984). These experiences shaped the mission of many birth defect programs to focus on the surveillance of fetuses/infants affected by birth defects to monitor prevalence, identify and respond to clusters, and explore the epidemiology of birth defects as early warning systems to identify potential teratogens. This work helped identify additional risk factors for birth defects, support primary prevention opportunities, such as folic acid fortification and supplementation for neural tube defect prevention, and enabled evaluations of the success of those efforts (Harris et al., 2017). Improved early identification of birth defects through prenatal detection and critical congenital heart defect screening, as well as advances in clinical interventions and treatments, have improved survival of infants and children with birth defects over the last few decades (Ho, Quigley, Tatwavedi, Britto, & Kurinczuk, 2021; Wang, Hu, Druschel, & Kirby, 2011). Conditions once largely limited to infancy are now impacting the health and well-being of adults. For example, there are more people living with congenital heart defects and spina bifida in the United States than infants born with these conditions each year (Danielson, McKing, Devine, & Correa, 2009; Gilboa et al., 2016; Hoffman & Kaplan, 2002; Ouyang, Grosse, Armour, & Waitzman, 2007; Parker et al., 2010; Reller, Strickland, Riehle-Colarusso, Mahle, & Correa, 2008). The clinical and public health communities have begun to expand their mission and activities to include a focus not only on surveillance during pregnancy/infancy and primary prevention opportunities, but also on the needs of children, adolescents and adults and secondary prevention that can support the health and well-being of individuals living with birth defects across the lifespan. An initial step to promote the importance of advancing awareness of birth defects across the lifespan was the formal renaming of Birth Defects Prevention Month, which occurs in January each year, to Birth Defects Awareness Month (Centers for Disease Control and Prevention [CDC], 2021a). Historically, this event has provided an opportunity to promote primary prevention messages, including the importance of folic acid consumption before and during pregnancy, the avoidance of alcohol, and maintaining a healthy weight. The change from “prevention” to “awareness” enhances messaging opportunities to highlight issues that impact children, adolescents, and adults living with birth defects. Examples include ensuring children are connected to early intervention services to promote optimal development, supporting adolescents who are transitioning from pediatric to adult clinical care, ensuring adults living with a birth defect are receiving appropriate specialty care, and addressing the mental health needs of individuals living with birth defects. This name change can signal the commitment of the birth defects community to ensuring that the clinical and nonclinical needs of the populations we serve are met. However, much work remains. In this editorial, we explore public health surveillance and research activities, and clinical and nonclinical outcomes across the lifespan, using examples from congenital heart defects and spina bifida, which improve our understanding of the needs of individuals living with birth defects to promote secondary prevention opportunities. Most current efforts to conduct population-based surveillance and research of birth defects have focused on monitoring fetuses/infants, and lifespan surveillance has sometimes been considered a special initiative or exclusively a research effort. Despite th","journal":"Birth Defects Research","year":2021,"id":216976,"datarank":0.0,"base_score":0.0,"endowment":0.0,"self_citation_contribution":0.0,"citation_network_contribution":0.0,"self_endowment_contribution":0.0,"citer_contribution":0.0,"corpus_percentile":null,"corpus_rank":null,"citation_count":4,"citer_count":0,"citers_with_citation_signal":0,"citers_with_endowment":0,"datacite_reuse_total":0,"is_dataset":false,"is_dataset_confidence":0.9544,"is_data_producer":false,"deposit_databanks":null,"is_oa":true,"file_count":0,"downloads":0,"has_version_chain":false,"published_date":"2021-01-01","fair_score":null,"fair_percentile":null,"algorithm_id":"datarank_citation_only_1hop_v6","ranking_scope":"data_only","authors":[{"id":537710,"name":"Catharine Riley","orcid":"0000-0003-2109-2824","position":1,"is_corresponding":false},{"id":448855,"name":"Alissa R. Van Zutphen","orcid":"0000-0002-3599-8857","position":2,"is_corresponding":false},{"id":813450,"name":"Timothy J. Brei","orcid":"0000-0003-2627-4846","position":3,"is_corresponding":false},{"id":537861,"name":"Vinita Leedom","orcid":"0000-0001-9878-1332","position":4,"is_corresponding":false},{"id":313583,"name":"Russell S. Kirby","orcid":"0000-0002-3489-401X","position":5,"is_corresponding":false},{"id":813451,"name":"Laura J. Pabst","orcid":"0000-0001-6020-5567","position":6,"is_corresponding":false},{"id":364762,"name":"Sherry L. Farr","orcid":"0000-0002-9773-9009","position":0,"is_corresponding":true}],"reference_count":57,"raw_metadata":null,"created_at":"2026-07-18T23:53:15.868165Z","pmid":"34921598","pmcid":null,"fwci":null,"citation_percentile":null,"influential_citations":0,"oa_status":null,"license":null,"views":0,"total_file_size_bytes":0,"version_count":0,"fair_f":null,"fair_a":null,"fair_i":null,"fair_r":null,"fair_zscore":null,"fair_rationale":null,"fair_model":null,"fair_agent_version":null,"fair_fulltext_source":null,"fair_has_llm":null,"fair_computed_at":null,"clinical_trials":[],"software_tools":[],"db_accessions":[],"linked_datasets":[],"topics":[]}