Babies Count: The national registry for children with visual impairments, birth to 3 years

Introduction Information about the prevalence of visual impairment in children is not collected systematically. Further, little information is available about children under age 6. Babies Count is a national registry of children with visual impairment in the United States, aged birth to 3 years. Methods Data were collected on 2,155 children at the point of entry into specialized early intervention programs. Data include patient diagnosis, functional vision, age, gender, ethnicity, and family characteristics. Concurrent visual pathology and systemic disabilities were also documented. Results Of the sample of 2,155 children, 1,167 (54%) were boys; approximately 40% of the children were legally blind, and 68% had disabilities in addition to visual impairment. Cortical visual impairment, retinopathy of prematurity (ROP), and optic nerve hypoplasia (ONH) were the three most prevalent visual conditions. In children with these three conditions, those with ROP were diagnosed the earliest (mean, 3.4 months), and those with cortical visual impairment were diagnosed latest (mean, 7.6 months). There was on average a 4.5 month mean lag between the diagnosis of children’s visual impairment and referral for services. ONH carried a poorer visual outcome when compared with other diagnoses, including CVI, ROP, and albinism. Conclusions Prevalent visual conditions in children in the United States differ from those found in developing countries and in adults with visual impairment. Babies Count is a comprehensive set of data that may affect our understanding of the epidemiology of visual impairment in the United States. In an era of preventive and outcome-based medicine, and with competition for health care and research funding, these data provide a valuable means for understanding the impact of these disorders on society.