Johannesburg - All that Qaqambile Phika wants is for her son to have a normal and happy childhood, but every day she has to fight to protect 3-year-old Sibaluhle from people who make fun of his appearance because he has a cleft lip and cleft palate.
Sibaluhle was born with the condition.
“I was a first-time mother and was shocked at what was going on with the baby. I went online and researched the condition and then found out about the Smile Foundation. They helped me understand it much better and then we took it from there.
“He had his first operation on his lips when he was five months old. He had the second one when he was nine-months-old for the palate. The operation became septic but they were able to fix it,” she said.
So far Sibaluhle, who lives in Freedom Park, has had four operations and still has to have rhinoplasty when he is a bit older. Despite all the corrective surgery, hurtful comments are still directed to the child.
“People don’t know what cleft and lip palate is. They think it’s witchcraft or that I made fun of disabled people before I got pregnant and I am now being punished. He gets teased about his nose not being straight.
“One of the first people who teased him was an older person who asked if the child had a stroke because I was stressing the child. Recently, a 13-year-old said his nose is skew. He’s still young and he asked me why his nose is not like other people’s. I don’t know what to say,” Phika said.
She said she is lucky that teachers at his preschool are supportive and kind.
“I doubt that the other children at school even understand that he looks different. I love him the way he is.
“I am happy because he is a child who brings peace in the home. Now I want the world to treat my son normally. I want him to have a happy, healthy childhood because he is so wonderful.”
Smile Foundation chief executive Hedley Lewis said stigma was still a big problem for children with the condition.
“The one integral part of being a truly rainbow nation is to understand differences. The stigma around children with burns and the stigma around children with cleft palate is ingrained in our society. These are the stigmas that families go through everyday.”
Lewis said in addition to assisting families get reconstructive surgery, they also offer them psychosocial support to be able to deal with stigma. He said when the national lockdown to curb the spread of Covid-19 was announced in March, elective surgeries were halted. They only started doing surgeries again in August and more than 100 have been performed across the country so far.
“We have to do these surgeries as soon as possible because otherwise these children could have speech issues, nutritional issues and confidence issues,” Hedley said.
The Star