A 13-year-old boy from Limpopo, born with a rare condition that paralyses his facial muscles, has become the first child in the country to undergo highly specialised surgery that could give him a chance to smile.
After years of being unable to speak clearly, express his emotions or chew normally, Eugene Sedibe is now waiting for a nerve taken from his left thigh and implanted into his face to heal and grow — a process that can take several months.
The 10-hour facial reanimation procedure was performed in March.
His mother, Monica Sedibe, has walked every step of the journey with him, supporting and encouraging him through the challenges they have faced since his birth on June 29 2013.
“Eugene was born with two club feet, so when he was just three days old they started with cement casts and the process of straightening out his feet. At that stage we didn’t know anything else was wrong, just that he was a very quiet and peaceful baby that didn’t cry a lot,” she said.
When she took him for his six-week immunisation, a clinic nurse alerted her that something might be wrong. While other babies wailed loudly after receiving their injections, Eugene barely cried.
It was a year later, after numerous visits to doctors, that Eugene was diagnosed with Moebius syndrome, a rare neurological condition that affects facial movement and expression.
It meant he could not blink properly or keep his mouth closed while chewing and — most significantly — he was unable to cry normally, speak clearly or smile.
“It didn’t matter very much when he was little, because the only time it was noticeable was when he cried or smiled. And we just encouraged him, and he adapted to the condition in his own way,” Monica said.
“But when he started nursery school, the ways that he was different became more apparent. When he was seven, his sister was born and he started to ask questions, wanting to know why he couldn’t smile and why he was different.
“I always wanted him to see himself as normal, so it was quite a challenge to stay strong and encouraging. When other kids were nasty, I would tell him not to listen, that he is not different. It was a time when he learnt a lot about himself.”
As Eugene grew older and entered puberty, he became increasingly aware of his condition. A serious child, wise beyond his years, he attended a special school where he received support with his speech and eating. He also began talking about his wish for “a normal mouth”.
I would tell him that he’s a big boy who should never lose hope, because he is my special boy and we were on a journey together
— Monica Sedibe, mother
“His dad was not around much, so it was hard when he started asking questions like, ‘I know that I am growing hair in my armpits; does it mean I am a man?’ I would tell him that he’s a big boy who should never lose hope, because he is my special boy and we were on a journey together.”
By then, Eugene was being treated at Steve Biko Academic Hospital in Pretoria, where his mother was put in touch with the Smile Foundation.
The organisation helped transfer him to Wits Donald Gordon Medical Centre (WDGMC) in Johannesburg, where plastic and reconstructive surgeon Dimitri Liakos identified him as a candidate for highly specialised reconstructive surgery that could improve not only his appearance but also his facial movement, function, dignity and quality of life.
Initially Eugene was not enthusiastic. Having spent much of his life in hospitals, he associated doctors and nurses with needles, pain and discomfort.
“When I was told that Eugene was going to be the first child to undergo the surgery, I was quite excited. But it took time for me to mentally prepare him for what was going to be a big operation,” Monica said.
She booked herself into a hotel for a week before taking Eugene to the hospital for surgery on March 18. At 8am, Eugene was wheeled into theatre, where a large team of doctors and nurses was waiting.
“I sat with him until he fell asleep. It was scary to watch him lose consciousness and then have to leave him.”
The procedure was lengthy and highly complex. Often misunderstood as primarily cosmetic, reconstructive microsurgery combines surgical precision, innovation and long-term rehabilitation.
In Eugene’s case, surgeons transferred functioning muscle, together with its blood and nerve supply, from his left thigh to the immobile side of his face. The muscle was connected to nerves under a microscope in a way that allows it to gradually knit together and, over time, restore movement.
“To do these cases successfully, you need a dedicated team and an environment that functions seamlessly,” said Liakos, who leads this work at WDGMC. “Microsurgery is never a one-person effort. It is the nursing staff, anaesthetists, theatre teams and systems around you that make these outcomes possible.”
For now, Eugene is back home in Limpopo, continuing his recovery. His speech is still unclear, but his new nerves and muscles are healing. Progress is slow, and it will take months before doctors know how successful the surgery has been and whether further procedures will be needed.
“We had to wait until Eugene was grown enough to undergo the surgery, so we are used to being patient and trusting our doctors,” said Monica.
“We haven’t yet seen any visible changes, but Eugene is doing his exercises every day and chewing on wooden ice-cream sticks to wake up the nerves and teach them to move. One day we’re hoping he will be able to pull his mouth back and smile.”
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