‘I looked at those tiny feet’: Joburg mother’s journey helped thousands of children walk without pain

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,” she recalled about the day her son Alex was born in 2003.

The memory is as vivid today as it was then. Within moments of his birth, a concerned obstetrician commented on Alex’s feet. 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 said.

“It was a traumatic time.”

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,” said Moss.

Despite 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 the 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 said she met with a paediatric orthopaedic surgeon. He told her he had fixed many clubfeet using the Kite method and 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 require further surgery.

Back then, the standard of care for clubfoot was surgical management, said Dr Pieter Maré, an orthopaedic surgeon who heads 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 said.

Moss followed the doctor’s advice, and during the first appointment, he began applying casts up to Alex’s knees.

“He started wrenching Alex’s foot, holding the back while 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.”

After two months and seven casts, there was little improvement in Alex’s feet. That is when Moss began searching for answers. 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 USs 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 is 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 this method was using the wrong anatomical methods,” said Prof Anria Horn, a consultant orthopaedic surgeon at the Red Cross Children’s Hospital in Cape Town.

“There are many 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 the manipulation should occur at a different joint,” she said.

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 he’d seen the photos I sent of my son’s feet. He said 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.”

Moss and her husband travelled 16,000km with 10-week-old Alex 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 no shortage of quacks exploiting vulnerable people with this type of story of an underused treatment. Ponseti, however, was a serious scientist and by 2003 his method had performed well in several studies and had been quite widely adopted by doctors in the US.

Moss said on the first visit Ponseti 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 recalled.

“Dr Ponseti’s normal protocol was to remove the cast every week, then remanipulate 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.”

After one cast, Alex’s foot looked different, said 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, and the third and final cast.”

After the procedure and with Alex 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 off the casts and started to put the brace on at night. She said Alex’s feet were straight.

On her final day in Iowa, Moss recalled Ponseti telling her: “You’re the first South African who has 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 what she had learnt, Moss created a website to provide information on clubfoot. The website gained traction and soon she started receiving requests from parents across Southern Africa for help to access the Ponseti method.

At the time, Moss said she knew of only one doctor using the method who 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 went to the US to attend a Ponseti training workshop and started using the method. I was sending everyone to him.”

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 said 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 said.

The second Steps Ponseti workshop in 2007 focused on public health facilities. Moss said 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 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. 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 more than 90% of cases”.

Horn said the Kite method is no longer used in South Africa after being replaced by the Ponseti method.

“Steps has played a big part in promoting the Ponseti method in South Africa and providing training, workshops and conferences and supporting clubfoot clinics across the country. Our job would have been much harder without the support Steps provides,” she said.

Given the equipment and know-how involved, making the Ponseti method available in the public sector was a challenge. In 2013, Moss launched a support programme to help government clinics offer the treatment.

Steps began by partnering with 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 them to be donated.

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 Steps collected, Moss estimated at least 2,000 children are born every year with clubfoot in South Africa.

Through the help of her organisation, she said: “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 said she has conducted more than 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 the countries to teach the Ponseti method there,” she said.

Though separated by an ocean, Moss said she stayed in close contact with Ponseti. She said 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 said.

“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, 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”, and enjoys playing padel and hiking.

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This article was first published by Spotlight. It is part of the online health journalism publication’s 2025 Women in Health series, featuring contributions by women to healthcare and science.