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Twelve-year-old Kobe has become the first child in Australia to receive a diaphragm pacer, helping him breathe independently for the first time in six years.  

Undergoing surgery at The Children’s Hospital at Westmead, Kobe was fitted with the new device to assist him with ventilation weaning, after complications from a common virus left him needing round-the-clock ventilation.  

The rare, but serious, neurological condition, known as acute flaccid myelitis, affects the spinal cord and in Kobe’s case, impacted his ability to breathe. 

“He woke up paralysed to the point where he was intubated and ventilator dependent. He loves soccer and for him to be able to play soccer, it meant somebody carrying the ventilator running behind him,â€� Kobe’s mum, Kristie, said.  

Professor Karen Waters, Head of Sleep Medicine at The Children’s Hospital at Westmead, first saw the potential of diaphragm pacing for children during a trip to the United States.  

The small device, roughly the size of a mobile phone, sits outside of the body and is connected via wires into the diaphragm, enabling patients to move around freely and breathe normally for extended periods of time. 

Bringing this knowledge back to Australia, Professor Waters worked with Dr Jonty Karpelowsky, Paediatric Surgeon, on adapting the technique to enable the surgery to be performed on children like Kobe.  

“The device works by sending electronic signals to the diaphragm to help stimulate breathing. Unlike mechanical ventilation, the device uses Kobe’s own muscles to work, which is much better for his lungs,â€� Professor Waters said. 

Since his surgery in August last year, Kobe can now spend several hours a day off ventilation, giving him the freedom to kick a soccer ball with his dad and enjoy go-karting with his friends.  

“It’s the small things we take for granted that Kobe is now able to do again. It’s made a huge difference to his quality of life,â€� Kristie said. 

Diaphragm pacing surgery is expected to benefit several patients around Australia each year, with other Australian centres also expressing interest in adopting the technique. 

 â€œWe are now seeing other centres looking to use this technique for their patients,â€� Professor Waters said. 

 â€œI really believe this experience has given younger specialists valuable insight into treatment options they can use for future patients, encouraging them to seek out the best care for children.â€� 

 It's hoped Kobe’s breathing will continue improving and he will gradually be able to wean off ventilation completely while awake.