Visible Scars, Invisible Struggles: Cleft Lip Across Borders

By Abbie Affum. 

Edited by: Fernando Aguilar.

What if a scar on your face meant a lifetime of being stared at, teased, or even shunned? In many countries such as Ethiopia, India, Ghana, and Bangladesh, individuals born with cleft lip carry visible scars into adulthood, often due to a lack of access to early surgical care (Global Burden of Disease Study, Kantar et al., 2023; Wydick et al., 2022). These scars, though physical, often invite social judgment and lead to emotional wounds—discrimination, bullying and low self-worth (Chung et al., 2019). While medical advancements in developed nations like the United States allow for early intervention and minimal scarring, patients in underserved regions are left with both untreated deformities and lasting emotional trauma (Chung et al., 2019). Additionally, this contrast reveals how something as visible as a scar can silently shape a person’s entire life. This article explores how access to cleft lip treatment influences not only physical appearances but also emotional and social well-being, shedding light on the often invisible struggles behind cleft lip scars around the world.

Occurring in approximately 1 in every 700 births worldwide, cleft lip develops when the tissues forming the upper lip fail to fuse properly during the fourth to seventh weeks of gestation, the period when a baby is developing inside the mother’s womb  (Wydick et al., 2022; Centers for Disease Control and Prevention [CDC], 2024; Children’s Hospital of Philadelphia, n.d.). In high-resource countries, early surgical repair typically reduces visible scarring and mitigates long-term effects. However, in many developing regions, limited access to timely and high-quality care means that children grow up with noticeable scars, physical reminders that often become social targets. These visible differences can lead to harmful experiences such as bullying, discrimination, and social rejection (See Figure 1: Child with visible cleft scar. Source: Adeyemo et al., 2009).

Figure 1. A 12-year-old from Nigeria with an incomplete cleft lip, awaiting surgery in a region with limited access to cleft care (Adeyemo et al., 2009).

Beyond physical health, individuals with unrepaired or visibly scarred cleft lips frequently face emotional challenges including anxiety, depression, and persistent low self-esteem (Wydick et al., 2022).  According to estimates, individuals in developing countries face significantly higher rates of psychosocial challenges such as low self-esteem, and depression due to untreated or visible cleft lip scars (Hutchinson et al., 2011).  As shown in Figure 2, low self-esteem is nearly twice as prevalent among patients in developing nations compared to those in developed ones. Similarly, peer teasing and exclusion affect over 65% of patients in underserved regions, an outcome not just of untreated conditions but of stigma that continues after surgery. These statistics highlight how scars can have consequences far beyond the physical, shaping emotional well-being and social identity.

Figure 2. Estimated prevalence of psychosocial impacts among individuals with cleft lip in developed vs. developing countries. Note: Data are estimated from published studies and synthesized for illustrative purposes. See Al-Namankany et al. (2018); Hunt et al. (2006); Morgan & Taylor (2009).

Moreover, during a medical mission trip I joined in Guatemala, I witnessed how patients with various untreated illnesses had to wait months or even years for care from visiting medical teams. Some had traveled for days, desperately hoping that this one opportunity might bring healing. That same sense of waiting, hoping, and suffering in silence reflects the reality for children born with cleft lip in underserved countries. Without access to surgical teams year-round, families of children born with cleft lip often rely on international charities like Smile Train, a nonprofit that provides free cleft surgery in low-resource settings—which may only visit once or twice a year (Smile Train, n.d.). Additionally, because of these delays, surgery happens long after the most effective window for minimal scarring has passed. As a result, children grow up with visible scars that act as a social marker—inviting stares, teasing, and rejection. The emotional effects of these scars can be profound, especially without access to follow-up counseling or mental health support (See Figure 2: Psychosocial impact of facial difference. Adapted Al-Namankany et al. (2018); Hunt et al. (2006); Morgan & Taylor (2009)).

To truly address the impact of cleft lip, solutions must go beyond surgical outreach. Thus, local governments and non-governmental organizations (NGOs), such as the Operation Smile and Smile Train, must invest in public education that reduces stigma, train healthcare workers to provide culturally sensitive psychosocial support, and integrate basic counselling services into cleft care programs (Afolabi, 2022). For instance, in Nigeria community-based initiatives have shown success in raising awareness about facial differences and promoting inclusive care (Afolabi, 2022). Additionally, In Ghana, programs like DHL’s surgical outreach have helped transform lives by providing early intervention and post-operative support. These interventions don’t just repair lips—they restore confidence, dignity, and the possibility of a future free from shame. Addressing the emotional burden of visible scarring is essential for ensuring these children do not just heal physically but socially and emotionally as well (See Figure 3: Post-surgical outcome. Source: DHL Ghana, 2024).

Figure 3. A teenager from Ghana holding a photo of herself before her cleft lip surgery, highlighting the life-changing impact of timely treatment. Her surgery was made possible through the nonprofit Operation Smile (Operation Smile, 2024).

A cleft lip is more than just a physical condition—it often leaves behind scars that quietly shape a person’s life. In many low-resource countries, delayed access to surgery means the scars are not just internal but etched visibly on the face. These facial scars, though remnants of healing, can lead to teasing, rejection, and lifelong emotional harm. Children with visible scars may grow up believing they are marked, different, or less worthy—especially in cultures that value physical "normalcy." It’s not just the cleft lip that causes pain, but how society reacts to the reminder left behind. If we want to create real change, we must address both the condition and the perception. By ensuring timely access to cleft care, reducing stigma through public education, and offering emotional support alongside surgery, we can give children more than just repaired lips—we can give them confidence, acceptance, and a future free of shame. Because behind every scar, there is not only a story but also a human being who deserves to be seen, understood, and embraced.

References

Adeyemo, W. L. (2009). Cleft deformities in adults and children aged over six years in Nigeria: Reasons for late presentation and management challenges. Clinical Cosmetic and Investigational Dentistry, Volume 1, 63–69. https://doi.org/10.2147/ccide.s6686

Al-Namankany, A., & Alhubaishi, A. (2018). Effects of cleft lip and palate on children's psychological health: A systematic review. Journal of Taibah University Medical Sciences, 13(4), 311–318. https://doi.org/10.1016/j.jtumed.2018.04.007

Children’s Hospital of Philadelphia. (n.d.). Cleft lip and palate: Overview. https://www.chop.edu/conditions-diseases/cleft-lip-and-palate

Chung, K. Y., Sorouri, K., Wang, L., Suryavanshi, T., & Fisher, D. (2019). The Impact of Social Stigma for Children with Cleft Lip and/or Palate in Low-resource Areas: A Systematic Review. Plastic and reconstructive surgery. Global open, 7(10), e2487. https://doi.org/10.1097/GOX.0000000000002487

Afolabi, A. F. (2022). Psychosocial impact of cleft lip and palate among Nigerian adolescents (Master’s thesis, Cleveland State University). OhioLINK Electronic Theses and Dissertations Center. https://etd.ohiolink.edu/acprod/odb_etd/ws/send_file/send?accession=csu1624475008242102&disposition=inline

Hunt, O., Burden, D., Hepper, P., & Johnston, C. (2006). The psychosocial effects of cleft lip and palate: A systematic review. The Cleft Palate-Craniofacial Journal, 42(5), 468–475. https://doi.org/10.1597/04-206.1

Hutchinson, J., Paterson, L. Q., & Mulliken, J. B. (2011). The psychosocial effects of cleft lip and palate in non-Anglo populations: A cross-cultural meta-analysis. International Journal of Pediatric Otorhinolaryngology, 75(1), 1–5. https://doi.org/10.1016/j.ijporl.2010.10.002

Kantar, R. S., Hamdan, U. S., Muller, J. N., Hemal, K., Younan, R. A., Haddad, M., Melhem, A. M., Don Griot, J. P. W., Breugem, C. C., & Mokdad, A. H. (2023). Global prevalence and burden of orofacial clefts: A systematic analysis for the Global Burden of Disease Study 2019. The Journal of Craniofacial Surgery, 34(7), 2012–2015. https://doi.org/10.1097/SCS.0000000000009591

Morgan, D. W., & Taylor, C. R. (2009). Anxiety and depression in adolescents with cleft lip and/or palate. Psychology, Health & Medicine, 14(6), 711–720. https://doi.org/10.1080/13548500903111806

Operation Smile. (2024, March 13). Changing lives in Ghana, one cleft lip repair surgery at a time. LOT by DHL. https://lot.dhl.com/changing-lives-in-ghana-one-cleft-lip-repair-surgery-at-a-time/

Smile Train. (n.d.). Our model of care. https://www.smiletrain.org/our-model

Sorooshian, P., Holden, J., Stewart, C. J., & Colville, R. J. (2018). Wound management in acute medicine. Journal of Plastic Reconstructive & Aesthetic Surgery, 72(3), 513–527. https://doi.org/10.1016/j.bjps.2018.12.008 

Wydick, B., Zahid, M., Manning, S., Maller, J., Evsanaa, K., Skjoldhorne, S., Bloom, M., Das, A., & Deshpande, G. (2022). The Impact of Cleft Lip/Palate and Surgical Intervention on Adolescent Life Outcomes. Annals of global health, 88(1), 25. https://doi.org/10.5334/aogh.3679

Yao, C. A., Swanson, J., Chanson, D., Taro, T. B., Gura, B., Figueiredo, J. C., Wipfli, H., Hatcher, K., Vanderburg, R., & Magee, W. P. (2016). Barriers to Reconstructive Surgery in Low- and Middle-Income Countries: A Cross-Sectional study of 453 cleft lip and cleft palate patients in Vietnam. Plastic & Reconstructive Surgery, 138(5), 887e–895e. https://doi.org/10.1097/prs.0000000000002656