Expanding care to give children born with clubfoot a brighter future

For families whose newborns are diagnosed with clubfoot, the first days can bring questions about what the condition means and what comes next.

A programme convened by Clubfoot Care for Kenya in partnership with the Global Clubfoot Initiative, Hope Walks and the Ministry of Health is seeking to improve access to care and strengthen the skills of healthcare providers.

For parents, however, the treatment journey is more than a medical process. It can involve financial, emotional and practical challenges as they support their children through care.

A mother’s journey

Beatrice Mueni Kyalo, whose baby is four months old, discovered the condition when she gave birth to her. The hospital where she delivered referred her to Mama Lucy Hospital, where there is a specialised clinic.

“That is where our journey began. It was not easy. I have two older children, a boy and a girl, who were born well. When I was told my baby had clubfoot, I had many questions because I had never heard of the condition before. I initially thought it was a small problem, but I soon realised she needed regular treatment.”

Mueni said the family started attending the clinic every Tuesday. The journey has brought financial and practical challenges, particularly while she was on maternity leave and had no income. The family relied on her husband’s salary to support the baby and their other children.

“Sometimes even Sh200 for transport is difficult to find, but you cannot miss the clinic appointment. It has also been difficult balancing work and caring for the baby. As a caregiver, it is hard to find an understanding employer, so I am grateful that my boss gives me time off every Tuesday to take my baby to hospital.”

She said the experience has also been emotionally difficult. Some children who started care alongside her daughter appeared to improve sooner, leaving her worried when her baby still needed more attention. She became stressed and cried but continued because she knew her daughter needed the care.

Mueni also said limited public understanding made her cautious about taking her daughter to church. At times, she hid the baby’s feet to avoid questions and judgement from people who did not understand what she was going through.

“I had also never heard of clubfoot, and I realised that many people do not understand it. Sometimes I hid my baby’s feet when we went to church because I did not want people asking, ‘Did you hurt your baby?’ or ‘What is wrong with your baby?’ Some people may judge a child or even think the baby is cursed before understanding the condition.”

Despite these challenges, Mueni said support from her husband has helped her continue with the appointments. She is encouraged by the progress her daughter has made, although follow-up care is still needed.

“My husband has been very supportive throughout the journey. When I feel overwhelmed, he encourages me to continue with the treatment. Today, my baby’s feet are straight and firm, although she still needs follow-up care.”

She encouraged other parents to seek help and remain committed to the care recommended by health workers.

“I encourage parents not to give up when a child is born with clubfoot. They should seek treatment early and follow the doctors’ advice. With treatment, the child can walk, go to school, play and participate in activities like other children. For me, the journey continues, but I thank God that we have come this far.”

Timely care can change outcomes

Patrick Kinyua has already seen the progress that timely care can bring. He said doctors noticed the condition in his daughter at birth and referred the family to the Association for the Physically Disabled of Kenya (APDK), where care began when she was about a week old.

“We started with casting, which continued for a few months. The casts were then removed, and she underwent a tenotomy as part of her clubfoot treatment,” he said.

Now one year and four months old, his daughter can walk freely, a development Kinyua described as a source of happiness and gratitude.

“I am so glad she can walk freely compared with how she was when she was born. I am happy and grateful that we sought treatment early,” he said.

Kinyua encouraged parents to seek medical attention as soon as possible when they notice the condition in their newborns.

“My advice to parents whose children are born with clubfoot is to seek treatment so that their children can have the opportunity to live a normal life,” he said.

He also urged families to seek medical care whenever they notice anything unusual about their children rather than delaying a check-up.

“There are clubfoot clinics in Nairobi and other counties, so parents should not be afraid to seek help. All you need to do is take your baby to a health facility and start treatment,” he said.

Kinyua said his family was fortunate not to experience stigma because they started care early, but noted that delays can result in avoidable difficulties and stigma due to limited understanding of the condition.

“Early treatment is key, and we need more awareness so that people understand clubfoot and know that it can be treated,” he said.

What care involves

The experiences of the two parents highlight why timely care and continued follow-up matter. Dr. Paul Mang’oli, an orthopaedic surgeon at Kenyatta National Hospital, said the condition is congenital and can either be idiopathic, with no known specific cause, or secondary to an underlying condition such as spina bifida, hydrocephalus or cerebral palsy.

He said care should begin as soon as possible after birth, using the non-operative Ponseti method, which involves manipulating the feet and applying serial casts weekly. The corrective phase usually takes six to eight weeks, depending on the severity.

“Once the corrective phase is complete and the foot is well corrected, we move to the maintenance phase,” he said, explaining that braces are used to maintain the corrected position.

Dr. Mang’oli said children should wear braces full-time for the first three months, after which they should use them at night and during daytime naps for up to five years. Adherence is important because stopping once the feet appear corrected can lead to recurrence.

Towards the end of the corrective phase, some children require a small procedure called a percutaneous Achilles tenotomy to release the tight tendon and achieve full correction. He said the procedure can often be performed in a clinic by trained clinicians without requiring theatre.

According to Dr. Mang’oli, previous studies show that about 90 per cent of children with idiopathic clubfoot can be fully corrected through the Ponseti method.

Kenya and much of sub-Saharan Africa record about 2,000 cases annually, but reaching every affected child remains a challenge. Through partnerships involving Clubfoot Care for Kenya, Global Clubfoot Initiative and Hope Walks, clinics have been established in several parts of the country, although access remains limited in northern Kenya.

Dr. Mang’oli said cost can also prevent families from completing care, particularly because many come from low-income backgrounds. He called for services, including non-operative care, to be included in the Social Health Insurance Fund (SHIF) package.

He also urged communities to reject stigma surrounding the condition, noting that untreated cases can cause lifelong disability, pain, pressure ulcers and difficulty wearing shoes, while limiting access to education and employment.

“Early treatment gives children an equal opportunity to pursue education and employment without limitations caused by clubfoot,” he said.

Bringing care closer to families

Ann Nyakio, Country Director of Clubfoot Support Kenya, said the organisation is supporting the training of clinicians from different countries to strengthen their ability to manage the condition using a non-surgical method.

The training brings together clinicians from Egypt, Cambodia, Burkina Faso, Zimbabwe, Zambia and Pakistan. Participants are being trained to become trainers in their respective countries, allowing them to pass the skills on to other healthcare workers.

In Kenya, two clinicians are being trained as national trainers, while about 20 clinicians from facilities including Kenyatta National Hospital, Moi Teaching and Referral Hospital, Mama Lucy Kibaki Hospital and Murang’a are being trained to provide care.

Nyakio said Clubfoot Support Kenya began its work in 2005 and has treated more than 20,000 children, with coverage of about 70 per cent.

She said gaps remain in northeastern and other marginalised areas and called for partners to help expand services to those regions.

The organisation is also working towards developing a policy on clubfoot management in Kenya and wants services included in national health insurance coverage.

Children treated at clinics supported by the organisation receive the service free of charge.

For families navigating the journey, access to care, support from caregivers and continued follow-up can help children progress and achieve corrected feet.