The Smile Foundation South Africa, founded in 2000 after a plea from President Nelson Mandela, changed Sylvia Mchunu’s daughter’s life.
Sylvia Mchunu and her daughter, Princess who was born with a cleft lip in September 2013. They get free help from the Smile Foundation South Africa that helps children to reconstruct their deformed faces. (Image: Supplied)
Melissa Javan
Princess Mchunu was four months old when she went for her first operation. Born with a cleft lip in 2013, the three year old has had a further two operations, and occasionally has food coming out of her nose.
Sylvia Mchunu says she had been bleeding a lot and was weak on the day she gave birth to Princess. “They [the hospital staff] took my baby to the nursery [after the birth], because they saw something was wrong.
“While every mother around me had their babies [in their arms], I didn’t have mine. They [the hospital staff] didn’t want me to see her. I thought ‘what went wrong?'”
She says her husband demanded to see his daughter. “He was the first one to tell me there is something wrong with her.”
He took it hard, says Sylvia. “I had sent my family photos of the baby, but he didn’t want to do that for his family. In our culture, some people tend to say things like ‘you have been bewitched’ if something like this happens.
“We had to hide the child. He was not comfortable – very reserved. It took him time to accept what’s going on,” she says. “I had to be strong.”
This is what a baby looks like shortly after she is born with a cleft lip. (Image: Wikipedia)
Her husband had suffered a burn injury before Princess was born. His operation was paid for by his employer. “We went to the same doctor who had done his operation after Princess’ birth. He told us that one operation would cost R50 000.
“We wouldn’t be able to afford that. We didn’t even have medical aid,” says Sylvia.
She and a friend Googled “cleft lip” and came across the Smile Foundation South Africa.
The Mchunus met with the Smile Foundation in January 2014. “There was a parent workshop we attended. My husband was the only father there.
“They explained everything to us. I felt so good about being there that I forgot there was something wrong with Princess.”
Mchunu says she was scared the first time Princess went to theatre in February 2014. The operation took longer than the doctors anticipated. Princess cried a lot after the operation. “We survived it,” says Sylvia.
The Smile Foundation was founded in 2000 after Thabile Manyathi sent a personal request to then President Nelson Mandela.
Manyathi had mailed a letter every month to Nelson Mandela appealing for help for her child, Thando. Born with facial paralysis, Thando needed to travel overseas to have a highly specialised procedure known as facial reanimation surgery.
After Mandela found one of Manyathi’s letters, he made a call to the Lubner family. They then later decided to bring the skills home.
According to the website, Dr Ron Zucker and Dr Craig Van Der Kolk were invited to South Africa to transfer the skills to South Africa.
George Psaras, then the head of Department of Plastic and Reconstructive Surgery at the University of Witwatersrand, was the first surgeon in the country to learn this very specialised skill.
Princess is one of the 2000 beneficiaries Smile Foundation South Africa has helped since 2000. Today the NGO helps children born with facial defects receive free corrective plastic and reconstructive surgery within the country. The organisation is currently based in seven of the nine academic hospitals in South Africa.
Watch the Smile Foundation South Africa promo video here:
Annually the organisation hosts a Smile Week at different hospitals around the country whereby the children receive surgery. Their parents get support before, during and after the surgeries.
Princess is the one in 700 South African children born with a cleft lip or cleft palate. The US Centers for Disease Control and Prevention explains the condition: “Cleft lip and cleft palate are birth defects that occur when a baby’s lip or mouth do not form properly during pregnancy. Together, these birth defects commonly are called “orofacial clefts.”
Sylvia is also a member of Cleft Friends, a group of parents or guardians of children with cleft lip of palates that have regular gatherings to support each other. “Most of the time the fathers are stressed. You meet them in such a state, but you have to understand their pain and give them time to heal.
“It’s wonderful to share experiences. It’s nice that people care about you.”
She says you become stronger when you have support. “It becomes easier when you are with the Cleft Friends.
“You also get more information the more you meet with them. For instance, sometimes things would be happening to Princess that I don’t know about. Then another mother advises me that it is a normal thing to happen.”
Watch Helena Cullis share how she and her husband started the Cleft Friends:
Princess is going for a check-up at the end of August, says Sylvia. “There were difficulties during the operation done in November last year. Her palate is not closed yet.”
Princess also regularly visits a speech therapist.
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