With forearm crutches in hand and a football at his feet, eight-year-old Hugo’s determined and cheeky personality shines through as he keeps up with his older brothers.
Moments like these are ones his parents, Benoit and Kati, cherish as they have been a long time coming since he was a little tot. Now, thanks to the life-changing care at Sydney Children’s Hospitals Network, there are so many more for the family to look forward to.
Hugo was born with spastic diplegic cerebral palsy, a condition characterised by increased muscle tone that causes muscle stiffness mainly in the legs which makes it difficult to walk.
He was also diagnosed with a rare brain condition called agenesis of the corpus callosum (ACC), in which the fibres that connect the left and right sides of the brain are partially or completely missing.
Hugo and his family have called Sydney Children’s Hospital, Randwick, (SCH) their second home since he was one year old, visiting frequently for treatment and management of his condition.
When Hugo was four years old, his team at SCH referred him to their colleagues at The Children’s Hospital at Westmead (CHW) for a major orthopaedic surgery called selective dorsal rhizotomy (SDR). This involves severing of nerves in the lumber spine that are causing muscle tightness in the legs, which is done to reduce spasticity in the lower limbs.
“For the right child, SDR surgery can make a real difference for troubling symptoms related to their cerebral palsy such as spasticity and pain, and help them with their walking,” Dr Simon Paget, Medical Director of Kids Rehab, said.
“For Hugo, we discussed his symptoms at length with his clinicians at SCH before making decisions about SDR surgery. Rehabilitation is all about teamwork, and SDR surgery is no different.
Working closely as a team, with our colleagues at SCH, means we can support each other and the best outcomes for children and families.”
The surgery was a successful and after three weeks of bed rest at CHW, Hugo was transferred back to SCH for rehabilitation.
Over the next six weeks, Hugo underwent twice daily physiotherapy to relearn how to move and strengthen his legs so he could walk again. A further two-years of targeted therapy in the community then followed.
Physiotherapist Johnny Leung, who was heavily involved in Hugo’s care together with the SCH Rehab2Kids Cerebral Palsy Service’s team, said multidisciplinary care was key to his recovery.
“Hugo’s success in therapy involved a multidisciplinary approach with physiotherapy, occupational therapy, clinical psychology, child life therapy, and of course, his family. He has done very well,” Johnny said.
“It's wonderful to see what can be achieved when hospitals, departments and clinicians all work together for the benefit of the family.”
While recovery was long and demanding, Hugo is now walking, sometimes without forearm crutches, and only uses a wheelchair for long distances. He’s also practicing his push-ups and is even working on doing the splits.
It is amazing the way he has pushed the limits. We are very proud of him,” Benoit said.
Kati echoed these sentiments.
"Hugo has a huge range of motion that he has never had before and can now build muscles he previously couldn't," she said.
"He is an amazing individual and he astounds us everyday. He is a 'yes man' and will attempt anything and everything, he is such a role model to us all."
For more information on the Network’s rehabilitation services, visit the SCHN website.