Throughout the world, a child is born with a cleft lip or palate nearly every three minutes. In resource-poor areas, many of these children die before their first birthday, and those who survive have difficulty eating, speaking and being accepted by their peers.
Lauren Mednick, PhD, a pediatric psychologist at Boston Children’s Hospital, knows this all too well. As a child life specialist with Operation Smile, she was part of a medical missionary team that traveled the world providing safe, effective reconstructive surgery and treatment to children with clefts and other facial deformities.
Working closely with these children and their families, Mednick was amazed at how many of them blamed the child’s condition on themselves, the supernatural or a combination of the two. She listened as a mother in Morocco “confessed” that her baby had been born with a cleft lip, because she looked at an animal with a cloven hoof during her pregnancy. She sat with a Haitian woman who attributed her child’s cleft lip to an afternoon when she spent too long looking at a child in her village with a facial deformity.
“I knew that in developing countries, where prenatal care is less advanced or less available, these conditions can come as quite a shock to parents, and that culturally, it’s common to explain them with folklore rather than medical explanations,” she says. “But there’s a difference between reading that and hearing it from a woman as she cradles her child. Seeing the self-blame and guilt made me poignantly aware how harmful these ideas can be to children and their families.”
Making matters worse, children born with cleft lip or cleft palate often continue to encounter stigma after their surgery. “If you are born in a culture that associates a cleft lip with a curse on your family, there’s a very real risk that you could still be ostracized after the cleft has been repaired,” Mednick says. “It’s a heartbreaking reality for many families, all over the world.”
During these medical missions, Mednick’s surgical colleague with Operation Smile, Christopher Weatherley-White, MD, also was concerned about the effect such cultural beliefs could have on the children he treated. With the aid of local interpreters, he conducted a series of questionnaire-based interviews with people who were seeking treatment, either for themselves or their child, or those who had previously had facial conditions repaired.
In all, he interviewed 279 people in Kenya, Russia, Cambodia, India, Egypt and Peru, exploring their personal perceptions of clefts, the belief systems behind those perceptions, and the social reactions they had experienced as a result of having a cleft or being related to someone with a cleft.
Mednick, now in Boston Children’s Department of Psychiatry, wanted to use Weatherly-White’s data and her own experience to show other medical missionaries the need to do more than just “fix” a physical trait. To do so, Mednick and colleagues coded and categorized the questionnaire responses into six causal attribution categories: environmental, chance, self-blame, supernatural, unknown and other.
The findings are not surprising: causal attributions for facial deformities were heavily influenced by culture. And it’s interesting to note how the attributions varied from place to place. People in India and Egypt most often attributed clefts to supernatural causes, while those in Peru most often reported self-blame. Russians were the only participants to name environmental causes as the reason for clefts—a common belief among people who grew up or raised families in the shadow of nuclear plants. In Kenya and Cambodia, most participants said they did not know the cause of clefts.
Having such a variety of beliefs so clearly laid out, strengthened Mednick’s view that medical missionaries need to think beyond the surgical suite to make the greatest impact on their patients’ lives.
She suggests that providers increase their efforts to share medically accurate information on potential causes of clefts as they visit communities. Such efforts could be bolstered, she says, by culturally sensitive public health and awareness campaigns—created and disseminated with the help of local interpreters, community leaders and medical professionals.
“If we can repair these children’s physical appearance, but can’t change the misinformed beliefs around the causes of their conditions, then some of them will continue to be discriminated against,” she says. “That could detract from the overall desired outcome for these kids, which ultimately is an improved quality of life.”