The Power and Importance of 25,000 Words

Abstract

Since 2000, the National Birth Defects Prevention Network (NBDPN), in collaboration with the U.S. National Center on Birth Defects and Developmental Disabilities at the Centers for Disease Control and Prevention, has published a special issue of Birth Defects Research to highlight advances in birth defects surveillance data, methodology, and research applications. Conservatively, over the past 25 years, more than 350,000 words of this journal were dedicated to this purpose. These 350,000+ words are important; authors labored over them, reviewers critiqued them, and editors ultimately approved them. These words are also powerful; after being published, readers read and cited them, researchers developed hypotheses based on them, and policymakers crafted policy or changed public health practice based on them. Most importantly, those words represent the children, families, and communities that are included in surveillance systems and research projects, and they helped shape the programs designed to meet their needs. These families and their experiences are an integral part of the work presented here. And yet, their experiences—joys and sorrows from the birth or death of a child; heartbreak, fear, or anxiety from a diagnosis or surgical procedure; and frustration over yet one more extended hospital stay—can never be fully captured in the neat and orderly rows and columns filled with numbers in spreadsheets or databases. It is therefore researchers' responsibility to not just analyze data, but to represent people's stories when they translate those numbers into words. Words are powerful and important.

In this issue, Bascom and Agopian directly consider the power of words to tell stories about individuals with birth defects by reviewing the use of person-first language as opposed to identity-first language in papers published using NBDPN data between 2002 and 2024. The authors report that only 13% of published articles during this time period used person-first language when describing individuals with birth defects in epidemiologic studies. Although the use of this language has evolved over time, we can and should do better. This is not the first time the NBDPN special issue has highlighted the importance of word choice for the birth defects community. In our 2012 special issue, Mai et al. (2012) explored public perception of birth defects terminology and reported that “birth defects,” although imperfect, is generally preferred over older terminology such as “congenital malformations” or “congenital anomalies.” More than a decade later, Bascom and Agopian's publication underscores the need to continue to practice introspection about how our word choices represent people affected by birth defects.

Also in this issue, we include original research articles about important issues for the birth defects field. Allred et al. (2024) describe the prevalence and characteristics of children born with macrocephaly, an often-understudied defect. Four teams of authors report findings based on data from the National Birth Defects Prevention Study, examining associations between antifungal medication use and birth defects (Papadopoulos et al. Early View), maternal diarrhea and birth defects (Waller et al. 2025), alcohol consumption and craniosynostosis (Fisher et al. Early View), and risk factors associated with infant sex and preterm birth among children with birth defects (Williford et al. Early View). Two groups of investigators focused on describing factors associated with quality of life for young adults and adults living with congenital heart defects, specifically comorbidities and healthcare utilization (Villamil et al. 2025) and educational attainment and employment status (Downing et al. 2025).

The words included in this NBDPN special issue cover a wide range of topics and represent the stories of families affected by a birth defect from pregnancy through adulthood. They explore possible answers to questions about birth defects, and in doing so, offer new directions for future research. We hope that these words will inspire you to use your own words—in newsletters, manuscripts, policy documents, presentations, podcasts, or blogs—to continue arguing for ways to improve people's health and quality of life, without losing perspective on those people's individual stories. However you choose to express them, remember that words are important and powerful; they can and will make a difference. For our part, we will continue to hold the words published in the NBDPN special issue to a high standard, reflecting both academic integrity and human dignity.

The approximately 25,000 words included in this special issue of Birth Defects Research were selected from articles submitted in response to a call for manuscripts distributed to U.S. state birth defect surveillance programs, members of NBDPN, the birth defects surveillance list service, and advertised on the NBDPN website (http://www.nbdpn.org). Each article in this special issue went through both editorial and formal blinded peer review. The review process used the ScholarOne peer-review online management system provided by Wiley Publishers for editors of Birth Defects Research. This publication would not have been successful without numerous dedicated individuals who contributed their time and effort to ensure the quality of the words in this NBDPN special issue. These include all the authors and peer reviewers of the submitted manuscripts. Many heartfelt thanks to the Birth Defects Research editors and staff for their assistance with the submission and publication process for these manuscripts. We also thank the staff of the Division of Birth Defects and Infant Disorders at the National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, for their support of the NBDPN.