Cleft palate foundation supports parents, gives kids confidence

First published in the Daily Maverick 168 weekly newspaper.

“I was born with a cleft palate myself and over the years I decided to volunteer with various organisations that deal with cleft [palates] and craniofacial defects,” says Seitebogo Peta.

Peta says that while volunteering at these organisations, which helped people with the birth defect, she realised that most of the focus was on raising the funds for the reconstructive surgery, as opposed to also providing emotional and wellness support, which she says spurred her to focus on this in her organisation. 

The foundation, which is a nonprofit, was launched in 2017 and raises funds to enable struggling parents to be able to take their children for surgery. She also says that part of her work involves speaking to both parents and children about what the causes are, and what can be done about the birth defect.

She says she aims to build children’s confidence, as often their parents do not know how to handle their cleft palate and the children are unsure of how to navigate the world, particularly when being bullied because they look different from other children.

“I believe that if you pour into a child’s bucket of confidence they are more prone to thrive, so that’s why I wanted to focus on children because there’s a lot that happens psychologically and emotionally that they don’t talk about,” Peta emphasises.

The foundation works with the parents and children who are affected by the birth defect of cleft palate and cleft lip. This is where the tissue that makes up the roof of the mouth does not join together properly during pregnancy. 

Peta explains that the defect usually happens between the first six and nine weeks of the pregnancy and can be as a result of genetics, or external environmental factors like the types of medication an expectant mother may be taking during pregnancy. Research has found that not getting enough folic acid during pregnancy may also be a cause.

“Most parents do not know what a cleft palate or cleft lip is, and nurses do not tell them anything after the child is born, and as a result they do not know where to turn.” Peta tells the story of a woman who, after giving birth, left the hospital with her baby not knowing what to do. She had to ask a friend who knows a nurse for information about a cleft palate and how to deal with it. 

Seitebogo Peta with her daughter Oleano Phoenix in Tshwane, South Africa, on 29 September 2021. (Photo: Alet Pretorius)