Raising awareness around clubfoot

From left, Michelle Dicey, Alethea Malan,aJanine van Niekerk, Cameron van der Burg holding baby Blessing Woifo, who has clubfoot, with Dee Murumbwa and Karen Moss.

There is no doubt that motherhood changes one’s life and this has certainly been the case for Karen Moss, the founder of Oranjezicht-based organisation, Steps.

Ms Moss never imagined that her giving birth to a child with clubfoot would change not only her life but the lives of thousands of parents with children born with clubfoot in South Africa.

It was in 2003 that Ms Moss welcomed her bundle of joy but her joy was soon replaced with fear when she realised that her son had bilateral congenital clubfoot.

After visiting surgeons across the country with no success, Ms Moss did extensive research and found herself in a small city in the midwestern United States, Iowa.

This was where she met Dr Ignacio Ponseti, a specialist and the brains behind the Ponseti method – a nonsurgical method of correcting clubfoot.

“Dr Ponseti was 89 years old at the time and he looked at my son’s feet and said ‘this would be easy to treat’ and within three casts, his feet were completely straight,” recalled Ms Moss.

This was the birth of Steps, a non-profit organisation that enhances the lives of children born with clubfoot in southern and east Africa. “I had been so amazed by the miracle he performed on my child after eight weeks of worrying and all of a sudden he was fine,” she said.

“He told me that he had been ignored by other surgeons and believed that mothers were strongest advocates for their children and pleaded with me to tell the doctors in the country to stop operating on children the way they did,” said Ms Moss.

Ms Moss said it wasn’t always easy to get the doctors involved, with some of them taking offence because they believed they knew better.

She said the doctors in state hospitals showed interest because they knew the kind of challenges that they were facing with a burden of clubfoot treatment.

“The doctors in public hospitals showed interest because of hundreds of children and only limited time for theatre and clubfoot babies were being left out,” she said.

The organisation works the with South African Paediatric Orthopaedic Society (SAPOS), the Department of Health and provides Ponseti faculty trainers using training materials approved by the Ponseti International Association.

Steps works with local clubfoot champions, doctors, clinics and government to set up national clubfoot programmes. They collaborate on capacity planning, community awareness and clinic set-up models and advise on treatment guidelines and programme implementation.

This September, Steps is running the STEPtember initiative, the aim of which is to mobilise and raise awareness about clubfoot.

“We want to remove the stigma around clubfoot and want to educate people to let them know that it can be treated,” said Ms Moss.

“It’s important for people to understand that clubfoot doesn’t differentiate. A lady in Sea Point or Oranjezicht or Khayelitsha and any rural area could have a baby with clubfoot and there is not enough money, especially in rural areas to do research on this,” said Ann Wallis-Brown, who is the marketing consultant for the organisation.

Samia Dawood was 20 weeks pregnant when she found out that her baby had clubfoot.

She said she was devastated when she heard the news and knew nothing about clubfoot. It was through a friend that she learnt about the work that Steps were doing.

“I called them and couldn’t even talk properly because I was crying. I had no hope. They tried to calm me down, promised me that the baby would be okay,” she said.

Ms Dawood said when her daughter, Zaineb, was 10 days old, she went for her first cast.

“Today my child is treated and she can walk and run. She wants to be a ballerina,” said Ms Dawood.

Members of the public are urged to be part of the STEPtember initiative by committing to take 10 000 steps a day that will raise the critical funds needed to help more children born with clubfoot to walk, run and play, without disability. Every rand that you raise will go towards supporting the 2 000 South African babies born every year with clubfoot. Visit https://steps.org.za/ for more information on how to do this.