The prevalence of selected major external birth defects from a population- based surveillance program in Haryana, India, 2015–2019

Background: Most published birth defects (BDs) prevalence estimates in India are estimated from hospital-based surveillance studies. We estimated the prevalence of selected major external BDs using data from active, population-based surveillance in two districts of Haryana- Ambala and Yamunanagar, India. Methods: Active surveillance of all deliveries between 2015–2019 was led by the Foundation for Survival of Women and Children (SWACH) and conducted by community healthcare workers in rural Haryana. Cases were defined as any live birth or stillbirth with a selected major external BD born to a mother residing in one of the 10 rural subdistricts of Ambala or Yamuna Nagar at the time of delivery. The prevalence of BDs was estimated overall and stratified by birth outcome, infant sex, and birth year. Results: Among 124,942 live and stillbirths, 611 infants had a major external BD. The highest prevalence (per 10,000 births) included talipes (18.6), neural tube defects (NTDs, 15.9), and orofacial clefts (9.2). The lowest prevalence included hypospadias (0.5), gastroschisis (0.5), and omphalocele (0.4). Among these cases, 533 (87.2% ) survived, and 78 (12.8%) were stillborn. Males had a higher prevalence of imperforate anus compared to females. NTDs and limb reduction defects decreased from 2015 to 2019 (p<0.004 trend). Conclusions: This study demonstrated the feasibility of implementing BD surveillance at birth through a network of community healthcare workers and provide. Findings provide first population-based estimates of major external BD prevalence among live births and stillbirths from India. In Haryana, major external BDs are common and contribute to perinatal mortality. In addition to determining burden and distribution of birth defects, the findings will help with planning prevention and clinical care activities related to BDs in Haryana.