Spreading the word about clubfoot treatment

By Ivan Moreno

Jennifer Trevillian knew nothing about clubfoot when her daughter was born in 2000 with the condition that left one of her feet twisted. A doctor recommended surgery, but she couldn’t help wondering if there was another way.

Seeking advice from online support groups, Trevillian learned about a nonsurgical treatment using a series of plaster casts and braces to gently guide the foot into the right position. Just weeks before her 4-month-old was scheduled for surgery, she decided to give the casts a try, driving eight hours each week with her daughter Kelly from their home in Chatham, Michigan, to appointments at the Iowa City clinic of Ignacio Ponseti, the doctor who pioneered the method.

“He completely fixed her foot in the amount of time when we were just waiting for her to be big enough to handle the reconstructive surgery,” Trevillian says. “I had been carrying this weight for four months since my daughter was born, and when I got to Iowa, that whole weight was lifted off my shoulders and I just finally felt like she was going to be OK.”

About 1 child in 750 worldwide is born with clubfoot. That's more than 175,000 children a year with the condition in which one or both feet are twisted inward at birth. Today, the Ponseti method is routine in the U.S. and many other developed countries. It has proven 95 percent effective in restoring mobility and the outward appearance of the feet. Children treated for clubfoot using plaster casts have gone on to become star athletes, including Troy Aikman, Mia Hamm, and Kristi Yamaguchi.

Yet in many parts of the world, doctors and parents are unfamiliar with the Ponseti method. The condition is often left untreated, and children grow up having to hobble on the sides of their feet, scorned in some cultures as outcasts and forced into a life of poverty. Or children are treated with surgery, which can lead to weakened muscles and pain in adulthood.

The primary barriers are a lack of public awareness and the need to train doctors. Rotary members across the globe are overcoming those hurdles with the support of Rotary Foundation global grants. Teams of experts have taught doctors from Colombia and Brazil to India and Bangladesh to perform the Ponseti method, which is deceptively simple but requires attentive instruction in person. Rotary clubs are also supporting families with transportation to clinics, information about treatment, housing, and other needs.

"There's a lack of awareness in many countries that clubfoot is treatable, especially when you get into low-resource countries," says Tomeka Petersen, co-chair of the Rotary Action Group for Clubfoot, which launched in 2015.

Although Ponseti developed his method in the 1940s, it has become significantly more prevalent in the 21st century, according to a study published in the World Journal of Orthopedics in 2014. By then, the method was used in 113 United Nations member countries, but that still represented only 59 percent of countries in the world, the study noted.

Besides lacking proper training, doctors sometimes have a financial incentive to perform surgery, which can cost tens of thousands of dollars in the U.S., compared with a few thousand dollars for the Ponseti method, according to Jose Morcuende, a member of the Rotary Club of Iowa City and a doctor who is a leading authority on clubfoot treatment.

Surgeries often result in complications and long-term pain that require additional operations, says Morcuende, who trained under Ponseti and took over his practice when Ponseti died in 2009. Morcuende is director of the Iowa-based Ponseti International Association, a key partner of the Rotary Action Group.

Since Rotary members started the group, global grants have supported projects to teach the Ponseti method to orthopedic doctors in Latin America, expanding the use of the method in Brazil, Mexico, Bolivia, Argentina, Ecuador, Colombia, and Honduras.

The money has gone a long way. To illustrate the impact, the action group uses an example from Brazil. A 2016 project there fully trained 50 orthopedists, supported by $193,591 from The Rotary Foundation and Rotary districts in Brazil and the U.S. That works out to $3,872 per doctor. If the doctors each treat an average of 50 new patients annually for 20 years, they will have collectively helped 50,000 people with clubfoot, meaning the training investment per patient would be just $3.87.

The efforts are succeeding in other ways. In Colombia, for instance, the government has embraced the treatment and is in the process of integrating the Ponseti method into its health care system, says Astrid Medina Cañon, president of the Colombian Pediatric Orthopedic Society and member of the Rotary Club of Bogotá Centenario.

Having the government's support will help ensure that the estimated 800 children born each year with clubfoot in Colombia are treated with the Ponseti method and are provided the specialty braces that must be worn at night for up to five years after the final cast is removed to prevent a relapse, she says. "It's going to function like vaccines," Medina Cañon says. "Because children born in Colombia have a right to vaccines paid for by the government."

Medina Cañon says it's gratifying to see children with perfectly straight feet a couple of months after arriving at her clinic with a deformity that would otherwise make them outcasts. Children with clubfoot are sometimes put up for adoption.

Colombian parents and their children who once faced a lifetime of uncertainty say they have a brighter future than they imagined thanks to the Ponseti treatment.

"I had never heard of the Ponseti method before," says Alejandra Orjuela, who found out from her first ultrasound that her son would be born with clubfoot. "It was the doctor who explained it all, how the method really works, how the plaster castings correct the foot," she says in a video produced as part of a global grant-supported project.

Another parent recalls crying every time she changed her son's clothes those first weeks after his birth. "Our biggest fear was to imagine him as an adult, still living with that problem," Victoria Beltrán says in the video. "When we started his treatment I had the feeling my soul came back to me."

Trevillian, who now lives in Mahomet, Illinois, experienced a similar relief when she began taking her daughter to Iowa every week to replace the cast on her left leg. Her experience inspired her to spread the word through the online parent support groups that first guided her. "We provided tips, encouragement, and support to get through the casting stages and bracing stages," Trevillian says. "There is a lot of social stigma and uneasiness when a parent takes their child out in public in casts and braces."

Trevillian was part of a movement that Morcuende credits with increasing awareness about the Ponseti method and persuading doctors in the U.S. to learn it by showing them the results children achieved without the surgery orthopedists had recommended.

Kelly Trevillian is now a 23-year-old graduate student in speech pathology at the University of Wisconsin in Madison. She sometimes wonders how different — and possibly more challenging — life would be if she had the surgery as a baby. Many who know her are unaware she once had a clubfoot.

"Any time I bring it up, no one's even really heard of clubfoot to begin with, but if they have they're always surprised," she says. "Just today I told someone and they were like, 'Oh, I had no idea.' It's a surprise and I'm assuming that's because my mobility is completely normal."

This story originally appeared in the April 2023 issue of Rotary magazine.