Operation Smile is collaborating with the International Family Study to help understand the tougher questions about cleft conditions.
Born with a cleft lip, Dayana from Petén, Guatemala always had two questions on her mind: “When am I going to get surgery?” and “Why was I born with a cleft condition?” And for 11 years, Dayana’s mom, Eluvia, didn’t have the answers.
Finally, the first question was answered after a long-awaited cleft surgery was scheduled through Operation Smile Guatemala. While surgery transformed Dayana’s smile and gave her a new chance at a more confident life, the second question was still unanswered.
Ever since Operation Smile’s inception in 1982, families have sought to understand the causes of cleft conditions. Health care providers have always heard the great “Why” question. That is the reason Operation Smile helps conduct research that answers the questions that surgery alone cannot: Why do cleft conditions happen? How can they be prevented? And how can we make care safer and more effective for families around the world?
Research Rooted in Diverse Lived Realities
“Operation Smile sees more patients with cleft conditions globally than any research institution or individual hospital ever will,” notes Allyn Auslander Decoteau, Ph.D., MPH, Associate Vice President of Research at Operation Smile. “If we don’t help to tackle this question, it is unlikely high-income institutions alone will ever fully understand what causes cleft to develop.”
Operation Smile supports holistic research on cleft conditions that factor in the life experiences of people in all types of environments. Historically, studies on the causes of cleft conditions have focused largely on high-income countries, not accurately reflecting the lived realities for people in low- and middle-income countries.
For instance, smoking cigarettes is a well-documented risk factor for cleft conditions. But many families in the countries we serve cannot afford cigarettes. Instead, they may face other risks tied to daily life, such as indoor cooking smoke, air pollution or limited access to nutrition. And understanding these differences matters.
A Powerful Partnership in Global Research
To serve families from all around the world, Operation Smile has collaborated to conduct research with our partners at the University of Southern California and Children’s Hospital of Los Angeles: the International Family Study (IFS). This partnership began in 2011 to create a database that is more representative of the global population and to combine the impacts of care and science so that fewer children would require surgery in the future.
Operation Smile collects information from maternal and paternal questionnaires and obtains saliva samples voluntarily provided by patients, their families and control groups. This is then sent to IFS who analyze genetic data from learning about families’ environments and daily lives and from the saliva samples, aiding researchers to identify patterns that help explain why cleft conditions occur.
“Without innovative partnerships like this — between an NGO that sees thousands of patients with cleft conditions each year and a world-class research institution — work at this scale would be impossible. It is through working together that we have a chance at answering this most important question,” Decoteau adds.
The study in collaboration with IFS has been conducted in nine countries: the Democratic Republic of Congo, Guatemala, Honduras, Madagascar, Malawi, Morocco, Nicaragua, the Philippines and Vietnam — representing low- and middle-income communities of those populations and including over 8,000 families.
“This is the largest cleft study in low- and middle-income countries being done.” says Gretchen Schulz, Project Manager of the International Family Study.
From Research to Real Life
Operation Smile’s Global Surgery Fellows utilize the analyses and research, as do educational institutions and researchers across the U.S. and in other countries. The data has been used to complete exome sequencing on data from Madagascar, to write a paper discussing agricultural chemical exposures and to research how cleft occurs during embryonic development and more.
“All research, all of our publications, are open access,” Schulz shares. “We want to provide this data, especially in areas where this knowledge is difficult to come by.”
While the analysis is ongoing, the team has already begun to identify trends that may help families in low- and middle-income countries.
“We are trying to understand everything we possibly can in terms of risk,” Schulz says. “For example, cook smoke increases the risk of having a child with cleft up to 50% in these countries.”
An additional analysis shows that some risk factors are found outside of the home. For example, in a 2023 study, research from South Africa has shown that exposure to air pollution while in utero can increase the risk of a cleft condition.
Research suggests that the healthy development of a baby can be affected by genetics, family history, pre-existing medical conditions, poor nutrition and exposure to harmful environmental substances. Through IFS, Operation Smile hopes to build a deeper understanding and highlight possible avenues for solutions.
“I believe one day, we will be able to prevent a portion of clefts from ever developing,” Decoteau shares. “Through IFS, we will make sure that our patients’ communities are not left behind.”
Towards a More Hopeful Future
While Dayana from Guatemala may never receive a single, simple answer for why she was born with a cleft condition, her story is helping fuel something even more powerful: a hopeful future where families have a stronger understanding and fewer questions about cleft conditions. Through global research like Operation Smile and IFS, the lived experiences of families like Dayana’s are shaping how we understand cleft conditions and are opening the doors to prevention.
