When an operation for brain cancer left a nine-year-old boy's face paralysed, a University surgeon and an anonymous donor stepped in to help.
Caleb Scott was only nine years old when he was admitted to hospital for surgery. Three days earlier, he’d been diagnosed with medulloblastoma – a fast-growing brain cancer. Without an operation to remove a large tumour, he had around two weeks left to live.
Reflecting on that traumatic time in 2015, his mother, Suzanne Turpie, says the family was focused only on Caleb’s survival. They had barely absorbed all the possible outcomes. In recovery, however, it was immediately apparent something was wrong.
Caleb’s tumour was gone, but so was the movement on the right-hand side of his body, including, most noticeably, his face.
“Going into the operation, they were just talking about saving his life, which of course was paramount,” his mother recalls. “We never prepared ourselves for him losing his smile.”
With an impressive commitment to physiotherapy, Caleb regained his ability to stand and walk. But his face – which everyone hoped would recover movement as his brain healed from surgery – remained paralysed. After nine months, doctors told Caleb and his parents the damage was likely to be permanent. It was a psychological blow they had not anticipated.
“Unfortunately, in this day and age we have to think about him growing up with online media and bullying. When he smiled, he looked different, and kids can be cruel,” says his mother. “We were concerned about the impact that would have on him going into high school, and later on in life. But more than that, it was just a reminder every time he smiled of what had happened, and we really wanted to try and fix it.”
When he smiled, he looked different, and kids can be cruel.
Conversations with other parents in medulloblastoma-support forums alerted them to a possible surgical solution. But it seemed the surgery was rarely performed in Australia and Caleb’s family could not afford a trip overseas. The possibility of a cure seemed remote.
It was around this time that the Cure My Brain foundation got in touch. The organisation works to support families affected by brain cancer. Hearing that the family’s greatest wish was to restore Caleb’s smile, the foundation facilitated introductions to specialists at the Chris O’Brien Lifehouse. Among them was University of Sydney clinician and researcher, Associate Professor Sydney Ch’ng, who holds an uncommon double-specialty in plastic surgery and head-and-neck surgery. She agreed to take Caleb’s case.
In July 2018, Caleb underwent six hours of surgery led by Ch’ng. She and her team took a piece of muscle from his leg, then used microsurgery to attach a nerve within the muscle to another nerve in Caleb’s cheek – one ordinarily responsible for chewing and clenching. Ch’ng joined artery to artery and vein to vein with sutures finer than hair, magnified eight times under a microscope.
Surgery of this kind doesn’t come cheap. The surgeons worked for free, but there were other costs involved, including the specialist care Caleb needed after the operation. An anonymous donor and fellow Lifehouse patient stepped in to help. Inspired by his own experience with cancer, the donor had made a gift to establish the Lifehouse Hardship Fund, which supports patients in need. His donation to Lifehouse – a partner in the University’s INSPIRED philanthropic campaign – helped cover Caleb’s specialist one-on-one observation and nursing care.
The operation immediately restored symmetry to Caleb’s face, but it was too early to tell if it had saved his smile. Then, after five weeks, there was a twitch in the relocated muscle. Caleb could move his face. The transplant had worked.
Before Caleb’s procedure, Lifehouse was not set up as a paediatric oncology hospital. “It took a year of preparations to make sure the Ministry of Health would give us the go-ahead to operate,” says Ch’ng.
As a result of Caleb’s pioneering admission and good outcomes, the hospital is now able to take children as young as 11, and who weigh as little as 37 kilograms.
Since the surgery, it’s been up to Caleb to do the hard work of rehabilitation, relearning how to smile by clenching his teeth to activate the repurposed nerve. It is hoped that over time, his young brain’s plasticity will render the process automatic.
“Following this surgery, his confidence just skyrocketed,” says his mother. “I didn’t think it would have such an impact on his overall wellbeing, but he is just shining now.”
Following this surgery, his confidence just skyrocketed.
Ch’ng says mindful philanthropic giving is especially needed for cases requiring reconstructive plastic surgery, because patients often struggle to advocate for themselves. “Many of these patients are so affected in terms of appearance, in terms of function, that it’s hard to actually get them to come out and champion the cause of reconstructive surgery,” she says.
Caleb started high school this year. He gets tired moving between classes, but remains optimistic that this is another adjustment that will settle over time. Where he used to play rugby union, soccer and participate in Nippers, he has moved to sports that better suit his changed abilities, enjoying Muay Thai and karate. “This gets his body moving and helps him with his balance and coordination,” says Turpie. “He loves the ‘rough’ stuff and it suits him down to a tee.”
On 17 September, we celebrated University donors with Thank You Day. Learn more about how our donors are changing the world.