Changing patterns in demography of cleft lip-cleft palate deformities in a developing country: the Smile Train effect--what lies ahead?

Background: The past decade has seen tremendous changes in the management of cleft deformities with the advent of the Smile Train project. The present study evaluates the effect of the Smile Train project on the demographics of cleft deformities.

Method: Data collected over the past three decades were studied retrospectively. The number of cases, age at presentation, and relative proportion of cleft lip-cleft palate patients were analyzed. Thirty patients operated on at the authors' institute for cleft lip deformity were evaluated for their awareness of cleft deformities, and the results were compared with those of 22 patients operated on elsewhere in camp settings.

Results: The numbers of patients with cleft deformities treated at the authors' institute from 1980 to 1989, 1990 to 1999, and 2000 to 2009 were 1189, 1050, and 374, respectively. However, the number with cleft palate has remained nearly constant over the three decades. The mean age of reporting for treatment of cleft palate was 16 months after being operated on for cleft lip at the authors' institute and 41 months after being operated on elsewhere in camps. All patients operated on at the authors' institute expressed awareness of holistic treatment of cleft deformities. Of the 22 patients operated on at other camps, 16 were ignorant about the time scale and 19 were unaware of the consequences of nonadherence to the treatment protocol. Nineteen of the 22 patients felt that enough information was not provided to them at initial surgery.

Conclusion: The authors recommend that cleft counseling, continued cleft care for the complete complex of deformities, and responsible behavior by the initial operating team should be the goals for the future.