UBC surgeon brings relief to thousands of disabled children in Uganda

Since she was three months old, Nicole Kebirunji, now just over two years of age, has been coming for treatments of her clubfoot at the Mulago National Referral Hospital in Kampala, Uganda. At this age, the prospects for correcting her deformity are excellent. Nicole’s mother, Emily, has followed instructions for managing her infant daughter’s casts and was willing to travel to a regional clinic nearly 100 kilometres from her Kampala home to buy fitted braces that weren’t then available locally. The goal is to make sure that Nicole will be walking normally, without braces, canes or crutches, by the time she’s old enough for school.

Emily Kebirunji has reason to be determined about her child’s treatment. Nicole’s future, and her family’s, is at stake. With a severe deformity such as clubfoot, Nicole would face a life of poverty, shame and social isolation. But with her foot successfully corrected, she can join her peers in receiving an education, gaining employment and leading as normal and happy a life as anyone else in her community.

Clubfoot is a congenital defect seen in 200,000 babies worldwide each year, 80 percent of them in the developing world. Nicole is one of more than 3,400 children in Uganda who have benefited from an innovative and relatively inexpensive non-surgical treatment for clubfoot known as the Ponseti Method. The method is now taught to thousands of Ugandan surgeons, nurses, paramedics, orthopedic technicians and other professionals in training modules at 38 schools of health-care across the country, and is available at low cost in 40 clinics, thanks to the pioneering efforts of Shafique Pirani, an orthopedic surgeon and professor at the University of British Columbia.

In 2004, Dr. Pirani and his University of Makerere partners in Uganda presented a proposal and received a commitment of $980,000 from the Canadian International Development Agency and $820,000 from the Ugandan Ministry of Health to launch a project, in partnership with Christian Blind Mission International, that would introduce this cost-effective method to Uganda, train a range of health-care professionals to detect and treat clubfoot, and provide the support required to make it sustainable.

“Now these children are able to go to school and mix with the other children without stigmatization,” says Edward Naddumba, Ugandan project director and head of the department of orthopedic surgery at Makerere University. He gives lectures about the project at conferences around the world and sees about 20 clubfoot patients a day in his busy clinic. As well, the Mulago Hospital Clubfoot Clinic is open twice weekly, averaging 50 visits a week. The parents, too, benefit from destigmatization, relieved the moment they arrive to find that help they can afford is available to their children.

The Uganda Sustainable Clubfoot Care Project has been so successful in raising public awareness, training professionals, providing financial help for casts, braces and transportation and ultimately correcting a life-altering disability that it was recognized by the World Health Organization in its 2011 World Report on Disability as a model for other developing countries to follow. Finding sustainable methods for treating childhood disabilities is recognized by CIDA as a key to reducing child poverty worldwide; illness is the most commonly cited factor linked to poverty and unemployment in developing countries. At the invitation of WHO, the project team is now contributing to the process to establish global standards for how disability should be taken into consideration in international development work. The formal process is similar to the one used to create standards for taking gender equality into account, which is now considered essential for effective development work.

Dr. Pirani knows what it’s like to have a disability, having been left with a limp from polio suffered at age three. Born in Uganda, he moved to Canada with his family when he was 16. On a trip to his homeland in 1998, he was shocked and saddened to see both children and adults with untreated clubfoot lining the roads he travelled, social outcasts who lived in poverty and had no hope for their future. He says, “I knew that unfortunately I couldn’t do much for the adults, but I could help the children.”

Two years earlier, Dr. Pirani had become aware of the Ponseti Method, first practised by a doctor in Iowa. It uses a series of casts and braces from infancy, when the foot is mostly cartilage, to correct clubfoot without surgery. “Had I made my trip back home five years earlier,” he says, “I wouldn’t have known about it, so it was a case of good timing.”
The treatment model piloted in Uganda is an unqualified success. With the endorsement from WHO, six other African countries are planning to implement the project’s training template themselves and a larger-scale version of the model is about to be undertaken in Bangladesh. More than anything, it is the children and their reassured parents who realize how critical the treatment will be to their quality of life.