The D3 ward at Tygerberg Hospital is a colourful hub of activity for Smile Week which will see 18 children from across the province have life-changing reconstructive surgeries consisting largely of cleft lip and palate repair procedures.
Coordinated by Smile Foundation, Smile Week, which started on Monday November 13, is a full working week during which surgeons, nurses, and other medical professionals perform reconstructive surgeries on children with congenital anomalies.
Ten-year-old Andre Daniels is among the children undergoing surgery this week. Andre was born with Crouzon Syndrome a rare genetic disorder where the skull bones fuse prematurely.
Andre’s mother Catherine Daniels says she was unaware of his condition at birth but noticed at the age of three that something was wrong with the shape of his head and eyes. She took him to a private doctor in Paarl and was later referred to a hospital in Durbanville where he was diagnosed.
“The doctor explained what it was and showed me pictures of other children. He explained that Andre’s case is not as severe and that an operation could fix it,” Ms Daniels said.
“We’ve waited a long time because he was supposed to be operated on at the age of 5, but then Covid happened. I thank the Lord that we were given a date to undergo the operation now.”
On Tuesday, Andre underwent an eight-hour surgery to relieve pressure off his optic nerves and brain which will improve his vision while addressing abnormalities in the bone structure.
“Normally you’ve got these sutures where your skull bones meet that allow growth, but if those sutures fuse prematurely and the brain is still trying to grow, there is no space for it to grow and that builds intracranial pressure,” said Professor Nick Kairinos, head of plastic surgery at Tygerberg Hospital.
“If that continues, unabated, it could be life threatening for the child. So there is an urgency that arises once they start developing this syndrome, but sadly from a resource point of view we are strapped.
“It’s difficult to get everyone operated on. In fact, at the moment, we only have one surgeon who comes and does this surgery, and he is not based here. He comes from private practice, and he does this free of charge, once a month. Without him, we probably wouldn’t be able to offer this service.
“At the end of the day, it all boils down to funding; all these surgeons are doing these cases free of charge.”
Ms Daniels said Andre excelled at school from Grade R to Grade 3. However, this year the Crouzon Syndrome started affecting his school work as his vision started getting weaker.
“I couldn’t fault him, I could only motivate and encourage him that he will get better. We know what the circumstances are, but I believe after this my child will be a brand new boy and will excel at school.”
Clinical psychologist Marga Roets said children like Andre were often bullied for their facial features.
“It is difficult because children are bullying and calling him names because of his facial features because of the syndrome, which is why we are grateful that he can have the operation to go on in life without these things holding him back.”
Ten-month-old Xia Samuels, of Northpine, melted hearts in the ward on Tuesday as she showed off her new smile.
Xia was born on Thursday December 29 last year with a bilateral cleft lip and palate. Her mother, Natalie Samuels, said that she did not know that she would be born with a cleft lip and palate.
They were referred to the Smile Foundation with Xia undergoing her first operation to repair her cleft lip in July. She will be undergoing an operation to repair her palette in January.
Ms Samuels lauded the doctors, nurses, and Smile Foundation for their “amazing work”.
“In this day and age, not everyone can afford medical aid, and to do these operations out of pocket costs thousands. I can only say thank you. Smile Foundation is a godsend.”
Ms Samuels said parents were added to a WhatsApp support group where they could ask questions and exchange information. They also received counselling before, during, and after the operation.
“They have a psychologist that comes in the night before. I was a nervous wreck until I spoke to her. She set my mind at ease so much so that the next day, Xia was the first patient, she went in for surgery and I was calm,” Ms Samuels said.
“However, people don’t tell you about the emotions afterwards. It was like I was introduced to a brand new child when I went to go and fetch her in the recovery room.
“It was just emotional because she was used to a wide mouth and now her lip was closed. She was trying to cry, but she could only cry out of the corner of her mouth so it was an emotional roller-coaster.”
Professor Kairinos said it was a privilege to be able to offer this kind of surgery and to be able to change the life of the child and family.
“We have to thank Tygerberg Hospital because they are giving up their theatres and their nursing staff to help us. The Smile Foundation, via donations, helps us – they help the parents, they help with transport, clothing, pillows, toys. So at the end of the day, how can the public help us? It’s just donations,” he said.