When Karen Mara Moss’ son was diagnosed with clubfoot, she travelled to the US in search of a life-changing treatment. She made a promise to bring it home and two decades on, her non-profit is at the heart of a remarkable success story.
“I looked at those tiny feet. They were turned over and rigidly pointing inwards,” recalls Karen Mara Moss about the day her son Alex was born in 2003.
For her, the memory is as vivid today as it was then. Within moments of his birth, a concerned obstetrician commented on Alex’s feet. Then the paediatrician diagnosed Alex with bilateral clubfoot, a condition in which a baby is born with one or both feet twisted inward and downward.
“I remember thinking: Will he walk with a limp? Will people mock him?” Moss tells Spotlight. “It was a traumatic time.”
She says the paediatrician told her not to worry. “He said they’d have to cut his feet and straighten them, and it would all be perfect,” says Moss.
Despite having several prenatal scans and tests, the condition had not been picked up before birth.
The most common form of clubfoot present at birth is idiopathic clubfoot, medically known as talipes equinovarus. It is when a baby’s foot is pointed in and down because the tissues connecting the muscles to the bone are shorter than usual, leading to pain and reduced mobility if left untreated, according to a review study published in The Lancet medical journal. In most cases, the cause of this congenital anomaly which ranges from mild to severe, is unknown, baby boys are twice as likely to be born with clubfoot as baby girls, and about half of children with clubfoot have it in both feet. Globally, an estimated 176 000 babies are born with the condition every year.
Eight days after Alex was born, Moss says she met with a paediatric orthopaedic surgeon. She says he told her he’d fixed many clubfeet using the Kite method and even had one patient playing first-team rugby. The Kite method was developed in the 1930s and uses manipulations and castings to achieve a sequential and gradual full correction of the forefoot, then the hindfoot, and finally, the ankle. After the casting is done, the baby wears a special splint to keep the feet pointing slightly outward and upward, but, critically, many would also require further surgery.
Back then, the standard of care for clubfoot was surgical management, says Dr Pieter Maré, an orthopaedic surgeon who heads up the clubfoot clinic at Greys Hospital in Pietermaritzburg, Kwazulu-Natal. “The reality was that a large number of children required extensive surgery before the Ponseti method,” he says.
Moss followed the doctor’s advice, and during that first appointment, she says he began applying casts up to Alex’s knees. “He started wrenching Alex’s foot, holding the back, whilst pushing the front of the foot, and plastering the foot. Alex was blue in the face from screaming. I was crying while holding him down,” she says.
Another way
But after two months and seven casts, she says there was little improvement in Alex’s feet. That is when Moss began searching for answers herself. Doing research on the internet, she discovered the University of Iowa Children’s Hospital website, where she read about a technique developed by Dr Ignacio Ponseti, which he claimed could help children have pain-free, functional feet without surgery.
The Ponseti method was developed in the 1950s but only became more widely used in the United States in the 1990s, and later in much of the rest of the world. The technique uses gentle manipulations and plaster casts to correct the midfoot, hindfoot, and forefoot simultaneously, while the ankle is treated afterwards. In some cases, before the last cast it applied, it may require a percutaneous tenotomy which is a minimally invasive procedure to cut the heel cord that is resistant to stretching. A brace is then fitted the same day as the last cast is taken off.
“The Kite method was developed to correct clubfoot but over time it was realised that this method was using the wrong anatomical methods,” explains Professor Anria Horn, a consultant orthopedic surgeon at the Red Cross Children’s Hospital in Cape Town.
“There are multiple joints in the foot and the Kite method was, effectively, manipulating the wrong joint in an attempt to bring about the correction in the foot. Ponseti discovered that the manipulation should occur at a different joint,” she says.
Back in 2003, Moss emailed Ponseti, and a few days later called his office. “I was put through to a man with a Spanish accent. He said he’d read my email, and that he’d seen the photos I sent of my son’s feet; that what we’d done was not the way his method worked. He suggested I go to Iowa because nobody in South Africa was practising his method,” she says.
Not long after this, Moss and her husband travelled with ten-week-old Alex for 10 000 miles from sunny South Africa to an unseasonable snowstorm in Iowa.
The idea of travelling to a foreign country to see a “special” doctor that one read about on the internet, with a treatment carrying his name, may raise red flags for some. There are after all no shortage of quacks out there exploiting vulnerable people with just this type of story of an underutilised treatment. Ponseti, however, was a serious scientist and, even by 2003, his method had performed well in several studies and had been quite widely adopted by doctors in the United States.
Moss says in that first visit, Ponseti eventually did a cast all the way up Alex’s leg. “He looked like a little turtle with his legs sticking out. By the time he’d done the second cast, Alex was asleep,” Moss recalls.
“Dr Ponseti’s normal protocol was to remove the cast every week, then re-manipulate the foot into a different position, and reapply the cast. For out-of-town patients, he accelerated the treatment and changed the cast every five days,” she adds.
After just one cast, Alex’s foot looked different, says Moss. “They did another cast, and five days later, it was time for the third cast. Dr Ponseti took the second cast off and then did the percutaneous tenotomy, as well as the third and final cast.”
After this procedure and with Alex now in his final casts, they were told they could return to South Africa and take the casts off three weeks later. Moss said an orthotist measured Alex’s feet before the tenotomy and gave her instructions on how to fit the clubfoot brace he would wear for four years while sleeping.
Three weeks later, back home, Moss soaked the casts off and started to put the brace on at night. She says Alex’s feet were straight.
‘A parting gift’
On her final day in Iowa, Moss recalls Ponseti telling her: “You’re the first South African that’s ever been here. Please go back home and tell the doctors not to operate on clubfoot”. He gave her his book, copies of his research papers, and CDs demonstrating his casting method – a parting gift that would shape the course of her life.
Determined to share her what she had learnt, Moss created a website to provide information on clubfoot. The website gained traction and soon she started getting requests from parents across southern Africa for help to access the Ponseti method.
At the time, Moss says she knew of only one doctor using the method, whom she recommended parents consult. “I’d met him soon after my return to South Africa in 2003 and had lent him Dr Ponseti’s book and papers. He’d then gone to the US to attend a Ponseti training workshop and started using the method. I was sending everyone to him.”
The founding of STEPS
Moss realised the best solution was to bring the training directly to South Africa. In 2005, despite having no experience in running a non-profit organisation, she founded STEPS, driven by her commitment to introduce the Ponseti method across the country.
Moss says STEPS held its first two-day Ponseti training course in 2006, with about 60 paediatric orthopaedic surgeons attending. “Three Ponseti experts came from Canada, Brazil and the UK to give the training. They taught a lot of theory and used bone models to demonstrate the method,” she says.
The second STEPS Ponseti workshop in 2007 focused on public health facilities. Moss says the training took place at the Charlotte Maxeke Johannesburg Academic Hospital.
Partly due to the workshops, partly due to the strength of the accumulating scientific evidence, the method caught on in the country. In 2012, the South African Paediatric Orthopaedic Society officially endorsed the method. A Cochrane Review published in the same year found that, while the available evidence was far from complete, it did indicate that the method works well. Cochrane Reviews are a highly regarded type of study that attempts to assess evidence from all randomised clinical trials relating to a specific medical question.
“The Ponseti method has become the gold standard for the treatment of idiopathic clubfoot,” stated an article published in the World Journal of Orthopedics published in 2014. And according to the Lancet study cited earlier, “the Ponseti method is widely recognised as an effective conservative treatment approach for clubfoot that avoids corrective surgery in over 90% of cases”.
Today, Horn says the Kite method isn’t used in South Africa any more, having been replaced by the Ponseti method. “STEPS has played a big part in promoting the Ponseti method in South Africa, as well as providing training, workshops and conferences and supporting clubfoot clinics across the country. Our job would have been much harder without the support that STEPS provides,” she adds.
Ponseti in the public sector
Given the equipment and know-how involved, making the Ponseti method available in South Africa’s public sector was a challenge. In 2013, Moss launched a support programme to help government clinics offer the treatment. STEPS began by partnering with just six clinics. With support from donors, they recruited staff to visit each clinic weekly to guide families or trained someone on-site to do so. They also provided educational materials to help raise awareness. Over time, this led to STEPS helping develop standard systems and processes for running the clinics, making care more consistent and accessible. When some clinics couldn’t provide braces, STEPS arranged for it to be donated.
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Today, STEPS has 48 partner clinics across South Africa, ranging from a tiny rural clinic in Lusikisiki in the Eastern Cape to bigger clinics in Gauteng and the Western Cape. “Lusikisiki might see three patients a week, and Chris Hani Baragwanath Academic Hospital could see 80. They all open once a week, except for some small, rural clinics,” Moss says.
Based on stats that STEPS collected, Moss estimates that at least 2 000 children are born every year with clubfoot in South Africa. Through the help of her organisation, she says: “More than 20 500 children have accessed effective treatment. We’ve … distributed 22 628 clubfoot braces. In 2024, we supported 4 592 children at partner clinics in different stages of the four-year treatment protocol.”
Moss adds that STEPS has conducted over 20 training sessions across South Africa, Namibia, Botswana, and the Seychelles, with more than 2 000 healthcare professionals. “Parents were bringing their children over the border as they couldn’t access treatment back home. We worked with the ministries of health in those countries to teach the Ponseti method there,” she says.
Though separated by an ocean, Moss says she stayed in close contact with Ponseti. She says the last time they saw each other was at a clubfoot symposium in Iowa in 2007. Two years later, he passed away at the age of 95.
“I felt as if I’d lost a member of my family,” Moss says. “He was the master, and he inspired me in my work to improve the lives of children born with clubfoot.” She said she would always carry the ache of missing him, but bringing his method to South Africa, just as she had promised, was something that gave her a deep sense of purpose and peace.
That promise, purpose and peace started with Alex who is today in his final year of a Bachelor of Commerce degree and who, in his own words, “enjoys being active outdoors with my friends”, likes playing padel, and going on hikes.
*This article is part of Spotlight’s 2025 Women in Health series, featuring the remarkable contributions of women to healthcare and science.
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