In September 2015, Caleb Scott was admitted to Sydney Children’s Hospital for brain surgery. Three days earlier, he had been a normal 9-year-old-boy, living and going to school in Port Macquarie.
From the regular cares of looking after a busy family of seven, Caleb’s parents were suddenly on an aeroplane, flying down to Sydney where their youngest son would have his skull opened and his brain operated on. There was barely time to think. What would come after the surgery was a blur.
“We thought he might be a bit lost for a few days, a few weeks, and then we’d get Caleb back,” says Suzanne.
“We got told on a Friday that he had brain cancer, and by Tuesday he was operated on,” adds Rob. “By Wednesday when he was in a ward, we knew there was something wrong.”
Caleb’s tumour, a fast-growing form of brain cancer called a medulloblastoma, was located deep in his brain, surrounded by nerves. When Caleb emerged, the tumour was gone, but so was most of the movement on the right-hand side of his body.
Through many hours of physiotherapy, Caleb learned to stand and walk again, but one thing didn’t seem to be improving – Caleb’s smile. The right-hand side of his face remained paralysed.
Seeing their normally bubbly and outgoing son unable to smile was confronting for Suzanne and stepdad Rob. They searched for a solution.
“We had seen that there were operations overseas that could be done, but we hadn’t heard of anything in Australia,” says Suzanne.
“We got told by so many people that that was it, there was no chance of movement ever coming back.”
By this time, the young family was struggling financially. Suzanne left her job to care for Caleb, and the couple was left without a large part of their income. The kind of surgery that Caleb would need to restore movement to his face seemed impossibly out of reach. They began to give up hope.
It was then that Lorraine McCrory, founder of Cure My Brain, came across the family’s GoFundMe, one day before they planned to close it.
The brain cancer charity
Lorraine McCrory and her husband started Cure My Brain, a charity supporting kids with brain cancer, in 2015.
When her friend’s daughter was diagnosed with a brain tumour, Lorraine saw first-hand how the costs associated with treatment and recovery stack up. Even with private health insurance, the family were left out of pocket for expenses the insurance wouldn’t cover, such as travel, accommodation, and time off work.
Today, the charity helps to cover these costs for two other families, as well as raising money for Chris O’Brien Lifehouse. Caleb and his parents were the second.
“When I found Caleb’s story, this young family were doing it so tough, and they really fitted the criteria of why Cure My Brain was created,” says Lorraine.
Lorraine reached out through GoFundMe, a website allowing people to collect donations from friends and family for causes like Caleb’s. The GoFundMe page had been started by a friend to help support them through Caleb’s treatment, and Suzanne and Rob were finally getting ready to shut it down.
Soon, the charity had connected the family with an exercise physiologist who specialised in brain injuries. Lorraine also learned about the family’s hopes for Caleb’s smile, and she suggested that Chris O’Brien Lifehouse might be able to help.
Suddenly, with an out-of-the-blue offer from a complete stranger, regaining Caleb’s smile started to feel like a possibility again.
Arranging the operation at Chris O’Brien Lifehouse took more than a year of complex negotiation.
At that time, the hospital didn’t normally treat children under 16, so the operation required a special one-off licence. Before they could start the application process, however, Caleb’s surgical team needed to know that the operation had a chance of working.
“We discussed Caleb’s case at the Sydney Facial Nerve Clinic, including best age at which to operate on him, best methods and the logistics involved in treating his case, with him being a minor,” says Professor Sydney Ch’ng. One of few surgeons to specialise in both head & neck and plastic surgery, Professor Ch’ng has a special interest in facial palsies like Caleb’s.
The family were at a routine check-up at Sydney Children’s hospital when they received the call to come to Lifehouse. They arrived to what felt like a job interview, with much higher stakes.
“We were seated at the front facing this team of doctors, and we were really overwhelmed at the time because there was so many people in front of us,” says Suzanne.
The team asked questions about Caleb’s case, and then they were asked to leave the room.
Professor Sydney Ch’ng remembers seeing how desperate the family were to have Caleb smiling again. “As a parent, I can completely empathise with that sentiment,” she says. There was no doubt in her mind that she wanted to help.
From there, it was a year-long wait while the hospital completed the necessary paperwork to carry out Caleb’s operation.
Finally the date was set for the 9th of July. Professor Sydney Ch’ng would carry out the procedure.
It took eight hours in total. A small muscle called the gracilis was removed from Caleb’s thigh and implanted in his cheek. Microsurgery was performed to join up the nerves and blood vessels, so that the muscle was now powered by a nerve that was not affected by his original surgery.
“The biggest risk was that it might not work, in addition to the general risks associated with an operation,” says Professor Ch’ng.
Thankfully, it did work. Two months later, the family has already noticed a difference. In a video sent through by Caleb’s mum, Caleb looks directly at the camera, smiling with ease. “My name is Caleb Scott and I’m from Port Macquarie,” he says. It’s not quite like it was before, but unless you knew Caleb’s story you would have trouble pinpointing anything wrong.
The nerve that activates his new muscle is the same one that lets Caleb clench his teeth, so the movement requires some thought. Given the plasticity of Caleb’s young brain, Professor Ch’ng is confident that in time it will become as instinctive as any other smile.
The operation couldn’t have come at a better time. In January, Caleb gets ready to head off to high school. For Suzanne, the transition is especially nerve wracking, but she hopes that the strong group of friends Caleb brings with him from primary school will make the move easier.
The family is grateful for the role that Sydney Ch’ng and Chris O’Brien Lifehouse played in his recovery. “We just cannot speak highly enough of Lifehouse and the allowances they made for Caleb,” says Suzanne.
But ultimately, she says, it comes back to Cure My Brain, without whom the operation might never have happened.
“Without Lifehouse and Cure My Brain, we’d be left with an option that we really wanted but that was always just out of our reach, and that would be devastating. So we’re forever grateful,” says Rob.