By Pauline Odhiambo
Seitebogo Peta is no longer disturbed by the scar on her upper lip – she considers it her identity. One final reconstructive surgery might have erased the last vestiges of a difficult childhood, but she would rather have her radiant smile complement what she believes "is a big part of who I am".
Born with a cleft lip and palate – a condition where a person has an opening in the upper lip or the roof of the mouth – Seitebogo went through multiple surgeries to get the smile she deserved.
The 32-year-old South African has long overcome her trauma of dealing with how the world looks at people with this condition. But that hasn't stopped her from fighting for others like her.
Through the Seitebogo Peta Foundation, an organisation she started in 2017, the young Samaritan helps restore the smiles of other people living with the condition.
"When I started my foundation. I just wanted to fix people up," Seitebogo tells TRT Afrika. “After I got pregnant, my focus gradually shifted to children with the condition."
Seitebogo was worried that her unborn baby would inherit her condition due to genetic factors, one of the primary causes of cleft lip and palate, according to the World Health Organisation (WHO).
"The first thing I did when the doctors handed me my newborn was to check her lips," she says of her daughter's birth in 2019.
"I was relieved to see she didn't have a cleft, although I kept thinking about the mental impact on parents of children with the condition."
Family link
Studies by WHO show no single cause of cleft lip or palate. Since genetic and environmental factors can cause the condition, these are often difficult to narrow down.
Sometimes, there is a clear family link. At other times, it is a "one-off" occurrence.
Among the environmental causes, WHO says that taking specific medication during pregnancy, smoking or drinking while pregnant, or even how a baby is positioned in the womb can be contributing factors.
But then, even the healthiest, best-planned pregnancies can culminate in babies being born with a cleft lip, palate or both.
"Some people in South Africa believe it is caused by witchcraft or that it's a punishment from God for something one or both parents might have done," says Seitebogo.
"I try to teach people that the causes of cleft lip or palate are not supernatural."
Emotional scars
A baby might have only a cleft palate or a cleft lip. But in cases like Seitebogo's, both can co-occur.
A cleft lip can be on one side of the upper lip (unilateral), or bilateral, the more common type where both sides of the upper lip are affected. Seitebogo was born with the latter and underwent her first corrective surgery as an infant.
She would have more surgeries to close two openings in the roof of her mouth, as well as a rhinoplasty to better align her nose with the rest of her facial features.
Bullied in school
Living with the condition in her childhood was tough on Seitebogo, who would be regularly subjected to taunts.
"I had always been a very confident child who would always speak up," she recounts. "In primary school, I argued with a boy in my class, who got back at me by saying I looked like a certain TV show character with features similar to a dog."
Being insulted left psychological scars that made Seitebogo develop a "mean-girl persona" as a defence mechanism.
"After I had my baby, I started thinking about how my child would survive bullying had she been born with a cleft," she says.
Too much to handle
In addition to the bullying in school, multiple hospital trips took a toll on young Seitebogo.
"Having a cleft often means constantly working with a big team of medical specialists," she explains. "You have maxillofacial specialists who focus on your jaw and other facial features, therapists, dental specialists and other surgeons. The whole process can be exhausting."
Seitebogo considers herself lucky that her parents could afford all of these treatments.
"Many South Africans with cleft lip, palate or both can't pay for any treatment," she says.
This gap in healthcare prompted Seitebogo to sharpen her foundation's focus on helping low-income families get the medical attention they desperately need.
"I deal with mums and dads who feel that caring for children with cleft conditions is too much to handle," Seitebogo says. "Some end up abandoning their children because of the financial challenges."
Priceless smile
Seitebogo has so far been able to assist more than 50 people, many of them young children, get the necessary corrective procedures.
"People come from far and wide to get help. I have had patients from the Eastern Cape, Kwazulu Natal and Northwest. I have helped a 25-year-old woman get cleft surgery and watched her get so excited to find out that she can also get dental treatments afterwards," she recalls.
"The highlight for me is working with patients who thought they would never get better and seeing them smile when they get better. That is priceless."
Seitebogo hopes to expand her foundation to include a recovery centre for all age groups to get the aftercare they need.
➤Click here to follow our WhatsApp channel for more stories.
