A relatively simple treatment is changing the lives of children born with the common defect clubfoot
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When Patience Kanyangarara’s father saw his newborn baby’s contorted feet for the first time, he felt certain the child had been cursed. Otherwise entirely healthy, the baby’s feet were twisted inwards at right angles from the ankle, a sure sign, he thought, that her mother must have done something shameful to provoke the anger of the ancestors. He took Patience to a local traditional healer, who subjected her to a range of spiritual and herbal treatments designed to placate the malevolent spirits responsible for the family’s misfortune, but the baby’s feet remained stubbornly twisted.
Patience was born with clubfoot, a common birth defect that, despite being easily treatable, remains one of the leading causes of disability throughout the developing world. For decades, treatment meant corrective surgery, something that was out of reach for most people in low-income countries. Today, the spread of a simpler, non-invasive form of treatment is changing that, transforming the global fight against this neglected condition and bringing the possibility of life-changing care to tens of thousands of children each year who would otherwise be disabled for life. But getting the treatment to where it’s most needed is no easy task. And with a new baby born with clubfoot every two to three minutes, for many, it’s a race against time.
As Patience entered her toddler years, she found that she could move around by hobbling on her ankles with her feet angled to the side, a necessary improvisation, but one that exacerbated her condition. Her feet grew bruised and calloused and became ever more contorted, while the strain of walking in this unnatural position dislocated one of her knees. Getting from one side of her bedroom to the other was a painful ordeal. Getting to school felt like nothing short of competing in a marathon.
‘I wasn’t able to join the other children when they were playing,’ says Patience, now 14, as she sits on the bright-pink sofa in the living room of her home in the town of Marondera, outside Zimbabwe’s capital, Harare. ‘I didn’t have many friends. It wasn’t easy.’
Often, she had to be carried to school by her aunt or other family members, only to be bullied by her classmates once she got there. She wished she could wear shoes like the other children and felt a deep sense of shame and helplessness at being unable to join in with simple household chores with her cousins.
Life for the physically disabled in Zimbabwe, as in many parts of the developing world, can be a living nightmare. In a country already struggling with rampant hyperinflation and staggering rates of unemployment, finding work and making a living can be virtually impossible. Few facilities cater to the disabled. And on top of that, stigma is widespread, with disabled people routinely facing abuse, ridicule and social marginalisation.
Around the world, there are an estimated 7.8 million people living with untreated clubfoot, with some 200,000 more being born with the condition each year. And despite recent improvements in treatment rates, in low- and middle-income countries, 85 per cent of sufferers still don’t have access to proper care.
‘There’s no excuse,’ says Daphne De Souza Lima Sorensen, the CEO of MiracleFeet, a US charity working to eliminate clubfoot disability around the world. ‘The effects of untreated clubfoot are so multi-dimensional: increased poverty, much higher rates of unemployment, neglect, abuse… and that doesn’t even account for the effect on the family. And yet there’s such an easy, straightforward and low-cost treatment.’
The first written reference to clubfoot comes from Hippocrates in around 400 BCE, yet it wasn’t until the 1950s that a Spanish physician, Ignacio Ponseti, discovered that the condition could be treated using little more than corrective plaster casts and foot abduction braces, without the need for major surgery.
For the next half century, the so-called Ponseti Method gained little traction, in part because of fierce resistance from the surgical profession. Only in the last two decades, thanks in large part to the efforts of medical experts and campaigners in the Global South, has this low-cost and low-resource method finally been accepted as the gold standard.
‘In the past, people thought clubfoot treatment needed specialised surgeons, and in a lot of these countries, there are very few of them,’ says Sorensen. ‘The Ponseti Method has made treatment accessible to everybody. Clubfoot treatment should be as easy and routine as getting newborns their vaccines.’
In Zimbabwe, the roll-out of the Ponseti Method and the hard work and persistence of a small but dedicated team of doctors, physiotherapists and nurses has led to a dramatic increase in treatment rates and provided a stark example of how different things can be. In little more than a decade, the percentage of new clubfoot patients being successfully treated has shot up from barely 20 per cent to more than 50 per cent.
Fourteen years ago, when Patience was born, the options for treatment were bleak. Even if the family had been aware that their daughter’s deformity was the result of a common medical condition and not a curse from malevolent spirits, they still would have struggled to find effective treatment. Today, a growing network of clinics run by the Zimbabwe Sustainable Clubfoot Programme (ZSCP) and supported by MiracleFeet strives to ensure that every newborn with the condition has access to care.
At a clinic in a government hospital in Harare, around a dozen mothers wearing brightly printed dresses sit on plastic chairs or unused gurneys, their newborn babies strapped to their backs or cradled in their laps, as a pair of doctors sets about replacing the casts on their latest patient. All the patients are less than a year old and all should go on to live normal lives. It’s a scene that’s now playing out weekly in some 15 clinics around the country and hundreds more around the world that didn’t exist a decade ago. And the results are astonishing.
By using plaster casts to gradually straighten out the feet, followed by a five-minute outpatient operation to snip through the Achilles tendon, medical teams can return most patients’ feet to their normal position within just a few weeks. They then wear a foot abduction brace to prevent any relapse – initially for 23 hours a day, then only at night. By the time they’re a few years old, they’re able to run, jump, skip, climb, kick a football and do pretty much everything their peers can. In 95 per cent of cases, the recovery is total.
In a town a few miles from Patience’s home, one four-year-old former patient spends most of his time racing his older brother around the family’s yard on his second-hand scooter. When he grows up, he wants to be a pilot, he says. Another has since become an award-winning choreographer and the head of her local dance troupe.
‘I didn’t even know what clubfoot was,’ says the girl’s mother, who now volunteers every week at her local clubfoot clinic. ‘I thought she’d be like that for life. I cried like nobody’s business. I never imagined she’d be able to walk or run, let alone dance.’
Treating clubfoot not only has a transformative impact on the patient’s life, it also has an enormous economic impact on the family and the country at large. According to a 2021 report by the Clinton Health Access Initiative, treating a single clubfoot patient can unlock as much as US$120,000 in earnings over the course of their lifetime, a 240-to-1 return on the roughly US$500 it costs to treat a patient using the Ponseti Method in the first year of life.
‘You can change a life, just like that,’ says Tracern Mugodo, Zimbabwe’s first female orthopaedic surgeon and the clinical manager of the ZSCP team. ‘I was drawn to work on clubfoot because the results are so positive. But there are still a lot of kids out there without access to care.’
Charities say that reaching those patients still going untreated each year, many of whom live in remote rural areas with little health infrastructure, will require the setting up of more clinics, the training of more health workers and large-scale education and awareness programmes. But funding is a huge obstacle.
Clubfoot receives just a fraction of the funds given to treat other birth defects and causes of preventable disability. This is partly due to the perception – a hangover from the pre-Ponseti days – that treating it is costly and complicated, and partly because it has become almost invisible in Western donor nations, where patients are routinely treated in the first months of life.
More than half a million Americans were born with clubfoot, but if you met them you would never know it. So too was the former England football captain Steven Gerrard. But apart from the families of clubfoot patients, few in the West have ever actually seen it, and many have never even heard of it.
What is especially frustrating for those involved in the fight against the condition is that, unlike so many other intractable public health issues, clubfoot disability is something that could realistically be virtually eliminated with comparatively little effort for relatively little expense. One recent study found that an investment of just US$160–200 million over the next 20 years could effectively end clubfoot disability worldwide. In the grand scheme of global health investment, that’s pocket change.
Patience began receiving clinical treatment in the nick of time at the age of nine. Ideally, treatment should begin shortly after birth, when the tendons and ligaments are at their most elastic. And although the Ponseti Method has been used successfully on older children, the longer the condition is left unaddressed, the more difficult it becomes to correct, and the more likely it is to lead to permanent disability.
Because her feet had become too severely twisted for straightforward Ponseti treatment, Patience was forced to undergo a series of intensive surgeries and had to endure many months in casts. Her recovery is still far from complete and further surgery awaits, but her doctors are hopeful she’ll regain enough mobility to live a full life. Already, she can walk to school by herself, albeit slowly and with the help of a crutch. She can take an active part in home life, helping out with the family’s side business of raising chicks in their living room. Cooking, she says, has become a passion. School is no longer a place to dread, but something to look forward to. She’s enjoying her classes and making new friends. She has dreams of becoming a doctor.
‘Without the treatment, she’d still be relying on people for everything,’ says her aunt, Grace Zimunya, who has been looking after Patience since her father walked out on the family and her mother was forced to leave in search of work overseas. ‘Now she’s the one who’s helping to take care of the family.’
On a recent Saturday evening, Patience took off the moon boot she still wears for much of the time, laid down her crutches and, with a look of steely determination, began walking slowly to and fro across the family’s kitchen. Each time she does these daily exercises they get a little bit easier. She knows she still has a long way to go, but the light at the end of the tunnel is growing brighter. And with her feet now back in something close to their natural position, she finds special pleasure in the simple joy of not having to go barefoot.
‘Things have improved a lot,’ she says, as the last golden rays of sunlight stream through the windows of her home. ‘I never thought I’d be able to walk in a pair of shoes’.
