The Independent, 23 June 2010

Jessica Mudditt

Baby Sohel and his father, a rickshaw driver, both suffer from clubfeet

A lone figure stands out amongst the others at an intersection in Mohammadpur. It is an old man with a hideously awkward gait. One of his abnormally large feet is curled inwards, whilst the other sticks out on a 45 degree angle. He has no heels and his calves are wasted. As the other pedestrians overtake him, he hobbles towards stationary vehicles, his hand outstretched with a tin bowl. He has no family, no job, no skills – even when he was young he didn’t have a future.

Across town in a hospital in Shabagh, a three-month-old baby cries out in pain. His tiny feet resemble misshapen carrots. A female physiotherapist firmly caresses them into a pair of new shoes, which are joined by a curved metal bar. His mother, a 21-year-old from Naranganj, looks on anxiously at her only son while his father sits quietly in a chair, hands folded in his lap. He is a rickshaw driver and he too was born with clubfeet. Because his condition is less severe than most, he has learnt to cope with his disability. But he wants more for his son than a familiarity with drudgery and pain.

In Bangladesh, a child is born with clubfeet every 15 minutes. Over the next decade, it is estimated that 50,000 children will be afflicted by the congenitive deformity. If the condition is left untreated, its severity increases. A child born with clubfeet is unlikely to attend school, due to both the stigma of the disability and the impracticality it creates. In Bangladesh it can be difficult for a person with a disability to find a marriage partner, and without skills or an education, a life in menial work or begging awaits.

Despite extensive international research, no specific factor has emerged as the cause of clubfeet, which affects one in every 1,000 babies. Corrective surgery can provide a cure, but it is costly and often leads to arthritis. Up until recently, the deformity continued to ruin the lives of those who could not afford the expensive operation. The situation is now changing as a result of the ‘Walk for Life’ Bangladesh Sustainable Foot Programme, which was established by a private Australian non-governmental organisation called The Glencoe Foundation. Its founder, Colin Macfarlane, first visited Bangladesh six years ago with a team of plastic surgeons. When Colin saw children with cleft lips begging on the streets, he decided on a “big change of lifestyle.” The former property developer began talking to Bangladeshi doctors, who shared the frustration of having the skills to treat cleft lips, but not the funds. Colin promptly founded Operation Cleft, which funded Bangladeshi surgeons to perform cleft and palate operations. To date, it has completed over 5,000 operations. Colin said, “Bangladeshi people are fantastic, but the problems of living here are enormous and unless you have money, you will simply not get access to medical treatment.”

‘Walk for Life’ treats patients with clubfeet using the Ponseti Method, which involves a series of corrective foot manipulations and castings followed by corrective shoe braces. No invasive surgery is required. The technique was developed by Doctor Ignacio Ponseti of the University of Iowa in the USA during the 1950s and it was repopularized in 2000 when it was rediscovered on the internet. Doctor Ponseti, who was by then in his eighties, came out of retirement and worked for another 10 years before his death in 2009, aged 95. The Ponseti Method is now regarded as the world standard for the treatment of clubfeet, which is in no doubt due to its 95 per cent success rate. Colin said, “We are now seeing an acceptance of the Ponseti Method in Bangladesh. A lot of our patients are being referred by their doctors, which is really heartening. Last week four children under two weeks old were brought to our clinic for treatment in a single day.”

Critically, the Ponseti Method costs just a fraction of the alternatives. In Uganda, where a national clubfeet programme is running, a shoemaker devised a brace using very simple steelwork that can be produced for around US$4. ‘Walk for Life’ brought the shoemaker to Bangladesh two years ago so that Bangladeshi cobblers could learn how to replicate his design. A factory in Jessore now employs four cobblers and a steelworker, and others have been trained to produce the braces, which are supplied to clinics across the country. Colin said, “It’s great because we have created an industry. In the United States the braces cost around $300. Here they cost less than four dollars. That’s been very important.” Colin underplays the success of his project with a smile and the following reply, “You don’t need a lot of money to make a difference if you have the right people around you.”

The Bangladesh Sustainable Foot Programme is aiming to make the Ponseti Method available to every affected infant within the next 10 years. Last Saturday, baby Sohel, the son of the rickshaw driver, was the thousandth child to receive treatment, which is completely free of charge. His mother Selina said, “I feel good about bringing my baby here. A friend of mine has a daughter with clubfeet and she recommended this programme. We have been massaging Sohel’s feet with oil as our doctor told us to, but his condition has not improved.”

The four dollar brace

A physiotherapist called Roksana Parveen has been working with clubfeet for the last two years. She explained the treatment method while deftly applying a toe-to-thigh plaster cast on a baby girl in Banghabandu Sheikh Mujib Medical University in Shabagh, Dhaka. Roksana said, “The Ponseti Method involves a gradual correction of the foot position. Whilst the treatment depends on the severity of the deformity, around five casts are usually required, and afterwards the child must wear braces full-time for three months. For the next three years, the braces must be worn every night and special shoes must be worn during the day. Otherwise a relapse will occur.” Once she had completed the job, the physiotherapist said, “We find that the children get used to the braces, especially if they are very young. It is possible to get results with older patients, though it’s much more difficult because the feet become rigid. We are concentrating on children under six- years-old.” If the deformity is severe, a minor operation called a “tenotomy” is performed, which severs the Achilles tendon. The procedure lasts 10 minutes and requires a local anesthetic. By lunchtime, Roksana had treated eight children and said that she expected to see another 15 before the clinic closed for the day. Five clinics have been set up in Dhaka, each opening for one day at a time, and another five are operating in in Khulna, Jessore, Kushtia, Rajshahi and Chittagong. Plans are also underway to open a clinic in Sylhet. ‘Walk for Life’ uses posters and loudspeaker announcements on rickshaws to recruit promising individuals to be trained to administer the treatment or to promote it. Colin said, “There are a lot of talented people in Bangladesh. What is missing is the opportunity to show their talent.”

Colin’s approach to charitable work is unlike many others. He has set up numerous projects in countries such as Vietnam and Uganda and in his native country, Australia, he is working with Cape York Partnerships to facilitate the digital recording of elder Aboriginals’ personal and clan histories. But regardless of a project’s location, Colin’s core philosophy is always that of long term change. He believes that to be sustainable, it is crucial to work within existing public healthcare systems. He said, “A really important part of this project is that the majority of clinics are in government clinics rather than private hospitals or NGO clinics. We want this programme to be incorporated into the government system. This is not easy, but we are in the early stages of negotiating a memorandum of understanding [MOU] with the health ministry.” The Bangladesh government has provided ‘Walk for Life’ with hospital rooms and also, on many occasions, with staff. Colin said, “The government is providing full cooperation and access – in many ways that is as important as a financial contribution.” Colin described the Minister of Health Dr AFM Ruhal Haque as “wonderfully cooperative.” He said, “Minister Haque is an orthopedic surgeon and he has practiced the Ponseti Method for a number of years and knows it well. Without his help we would not have moved along as fast as we have.” Colin hopes that once the MOU is in place, the Ponseti Method can be added to the syllabus of medical colleges for nurses and physiotherapists. Walk for Life wishes to facilitate the teaching as well as provide funds for training.

Colin beamed as he witnessed the physiotherapist administer the treatment for clubfeet for the thousandth time. After praising his staff, Colin’s expression changed and he became serious. He said, “We estimate there are 130 children born everyday with clubfeet in Bangladesh. So we want to get 130 phone calls everyday. Until that happens I won’t be satisfied.”