THE CONGENITAL DEFECT THAT CAN BE TREATED

World Birth Defects Day takes place annually on the 3rd March. It is a day that unites people and organisations working in the field of birth defects – also known as congenital anomalies, congenital disorders or congenital conditions.

It also focuses on raising awareness of the causes of birth defects and their impact to help destigmatise many of the conditions that are still regarded with suspicion around the world.

Clubfoot is one of these conditions.

Every year around 11 000 children are born with clubfoot in Southern Africa.  This results in one or both feet (unilateral or bilateral) twisted inward and pointed downward. The foot is rigid and cannot be pushed back into the correct position. The majority of children born with clubfoot are not missing any bones, muscles, or connective tissue. It is a congenital condition, meaning that when it occurs it is always present at birth.

In the past, many of these children were regarded with superstition and fear and some were forced to live a life of disability. Whilst this does still occur, fortunately there is increasing awareness around the world that this condition is not caused by the parents, that it can be very effectively treated, and that these children can go on to live active, productive lives with full mobility.

Steps Clubfoot Care is an NPO that operates in South Africa, Botswana, Namibia, Tanzania and the Seychelles. Founded in 2005 by Karen Mara Moss, who had a son with clubfoot, it was  founded to introduce and promote the non-invasive Ponseti Method of clubfoot treatment in southern Africa and to support families going through treatment.

Steps supports 35 partner clinics in the South African state health sector by training healthcare workers, focusing on advocacy and supplying clubfoot braces. Clubfoot clinic coordinators are trained by Steps on parent education and clinics are supplied with parent education leaflets, posters, training, and medical devices. Steps also mentors and supports clubfoot providers in neighbouring countries with educational resources, training and medical devices.

In 2021, Steps recorded 709 new patients enrolled into the clubfoot treatment programme. The national network of 35 South African partner clinics treated 2,902 patients and undertook 11,161 clubfoot clinic patient appointments.

“Unfortunately, the Covid-19 pandemic created challenges for clubfoot treatment, with some of the clinics closed or only partially operating during lockdown periods. However, the statistics are still very good,” says Karen Mara Moss, CEO and founder of Steps Clubfoot Care. “King Edward VII Hospital also joined the programme at the beginning of 2022 and we are expecting numbers in Kwazulu Natal to increase as access to treatment becomes easier.”

 

Whilst the data does not reflect all clubfoot treatment in South Africa as it is limited to Steps partner clinics, it does indicate that provinces with the most cases include Gauteng, Kwa-Zulu Natal, Eastern Cape and Western Cape.

Says Moss: “The remaining provinces have the added challenges of large rural populations and far distances to travel for treatment.”

The success stories are numerous. The important, and life changing fact – that any children who are born with clubfoot can be treated and avoid unnecessary disability - is a priority narrative for Steps.

“When my son was born with clubfoot, I felt very alone,” says Moss. “It took a great deal of research to find the Ponseti method, and a great deal of investment to have my son treated in the United States of America. It became my passion to not only bring this treatment method back to South Africa and make it available to all, but to prioritise supporting the parents in their journey, as their role is crucial for successful treatment. 

 

Our partner clinics do incredible work, and the statistics speak for themselves. The support from specialists and medical professionals as well as the clubfoot healthcare teams is essential and valued. Its impact is enormous. And the fact that, right now, thousands upon thousands of children in South Africa are able to walk and run, instead of living out their days with a severe disability, keeps us inspired, dedicated and focused on our mission every single day.”