The silent stigma and psychological toll of cleft in Pakistan – Insights from a high-volume cleft center

Background: Cleft lip and palate are among the most common congenital anomalies globally. While surgical outcomes have advanced in the past years, psychosocial impacts remain unaddressed in low- and middle-income countries. Objective: To highlight the psychosocial experiences of children and families affected by cleft in Pakistan and to present the importance of integrating psychology into comprehensive cleft care. Methods: Narrative data were collected through clinical observations, patient/parent stories, and family interviews at our center, which manages approximately 2000 patients every year. Qualitative themes were developed around parental reactions, stigma, children’s voices, and posttreatment transformation. Results: Families reported profound stigma around cleft, with mothers most often blamed for their child’s condition. Common myths around cleft included lunar eclipse, parent sin, and evil eye. Cleft children reported bullying, peer exclusion, and speech-related discrimination. Following surgery and psychological support, families showed relief, increased confidence, and social reintegration. Two case reflections illustrated severe psychological distress, including suicidal ideation, as well as positive transformations when support was provided. Conclusion: Surgical repair alone cannot address the psychosocial scars related with cleft. Integrating psychological services within comprehensive cleft care provides essential support to families, reduces stigma, and improves overall treatment outcomes. Policies targeting neonatal screening, awareness campaigns, and school-based education are urgently needed in Pakistan.