BBF Registry of Early Childhood Visual Impairment

The Blind Babies Foundation has been serving families of visually-impaired children in Northern California since 1949. One result of this intensive and long-term involvement in early childhood visual impairment is a large collection of case files, containing information on the demography and epidemiology of visually-impairments in children from birth to six years of age. BBF is now indexing these files, and collecting and analyzing the data they contain.

In 1994, a data collection model was established and data from over 1,200 client files were entered. The files that have been entered include children with birth dates between 1980 and 1995. Some 5,000 records remain to be reviewed, coded, and indexed. The data, once complete, will offer an important contribution to the literature on early childhood visual impairment.

This pilot program initiated by BBF has lead to the development of an American-Canadian project called The Model Registry of Early Childhood Visual Impairment Including Deafblindness. This project, directed by a collaborative group of educational and medical professionals, gathers information from families who have a young child with a visual impairment so that trends in eye conditions, early teaching needs, and medical research can be identified. The Model Registry will provide information to guide policy development, and project the future needs of school-aged children. For more information on the Model Registry contact Gail Calvello at the BBF office.

Some of the more important issues that emerged from BBF's 1994 collection of client data are:

Cortical Visual Impairment (CVI) is by far the leading diagnosis. Over 30% of the children served have CVI.
CVI, Retinopathy of Prematurity (ROP), Optic Nerve Hypoplasia (ONH), and Albinism, the four leading diagnosis, together account for 63% of this sample.
Nearly 60% of the children are multiply impaired, with cerebral palsy as the leading systemic diagnosis.
Boys are over-represented compared to girls. The sex ratio is 1269 boys to 1000 girls, as compared to an average 1050 boys to 1000 girls at live birth in the United States.
Most of the children (50%) are of European descent, followed by Latino/Latina (20%), and about equal numbers of African Americans (9%) and Asian Americans (8%).
Birth weight follows a bimodal distribution, due to the numerical significance of Retinopathy of Prematurity (ROP). That is, children who have ROP have a much lower average birth weight than full-term children with other visual impairment.

Diagnosis	Total
Albinism	63
Aniridia	16
Anophthalmia/ Microphthalmia	42
Cataracts	39
Coloboma	26
Cortical Visual Impairment	322
Delayed Visual Maturation	26
Glaucoma	14
Lebers	17
Optic Nerve Atrophy	40
Optic Nerve Hypoplasia	85
Other Retinal	31
Retinopathy of Prematurity	144
Rod-Cone Dystrophy	25
Unknown	18
Other	63
Total	971

The primary visual diagnosis and resultant impairment directly influence a child's potential use of visual information to view and interpret the world. As this graph shows, Cortical Visual Impairment (CVI) is the most common diagnosis. The presence of CVI inhibits a child's ability to interpret visual information. It is often associated with other disabilities, including cerebral palsy (Oxford 1993). Retinopathy of Prematurity, the second most common diagnosis, is associated with very low birth weight. Many extremely premature infants experience visual impairment associated with their prematurity (Keith and Doyle 1995).