For most people, getting on a plane for the first time is an adventure. But for eight-year-old Hayley Minson-Rivers, her first trip has been life-changing.
- Only two Australian hospitals perform the surgery Hayley has undergone
- The procedure is known as a pancreatectomy islet auto-transplant
- The SA Government wants it to become more widely available
The young Perth resident has been in and out of hospital dozens of times in her life.
She is among several hundred Australian children living with hereditary pancreatitis — but is one of just a handful to undergo a radical new procedure.
“I was having lots of pain and attacks with my pancreas. It stopped me from [going to] school,” she said.
“I like to run around and [go] swimming but it was hard before because my tummy would get sore.”
A new type of transplant surgery means Hayley and other children with the condition no longer need to wait for a donor, reducing the chance of them developing cancer and diabetes.
Several weeks ago, Hayley — armed with a suitcase full of teddies — boarded her first flight.
While she only had to travel as far as Adelaide for the procedure, her pancreas took a longer journey.
It was transported to a laboratory in Melbourne where the so-called islet cells were isolated, and then transfused back into Hayley’s body to create insulin in her liver.
The procedure is known as a pancreatectomy islet auto-transplant.
Hayley’s mother, Cathrine Minson, also suffered from pancreatitis as a child and eventually had to have emergency surgery to remove the organ at the age of nine.
“I always had to worry as a teenager and as an adult about the cancer side of things, there is a massive risk … of hitting the age of 40 or 50 and getting pancreatic cancer,” she said.
“[In Perth], they could do a total pancreatectomy which is just taking the pancreas out and seeing how she goes, or it was a donor.
“Waiting for something might be too late, something might never come up.”
Social media chat revealed the procedure
Ms Minson learned about the new procedure from a conversation on social media with another Adelaide mother whose daughter had also undergone it.
Women’s and Children’s Hospital paediatric surgeon Sanjeev Khurana explained it was the efforts of a mother pushing for her son to get the treatment in 2015 that meant the surgery was now available in Australia.
“When she confronted us with this option, it made us think as to why should we not be doing it here?” he said.
“Over the last two, three years we have developed this expertise as a team.
“But I think given the complexity of the surgery, you really need to have a complete team in place, which is why I suspect there might not be too many centres that take it up.”
Pancreatitis is particularly prominent among Indigenous children, but only five children have so far had a pancreatectomy islet auto-transplant in Australia.
Hayley in hospital with her mother Cathrine Minson, who had surgery as a child. (ABC News: Claire Campbell)
It is currently only performed on children at two hospitals, the Women’s and Children’s Hospital in Adelaide and the Children’s Hospital at Westmead in Sydney.
“By having what [Hayley’s] had done now … we have hopefully reduced the requirement for chronic pain medication, so she can get on and do everything else that she needs to,” Dr Khurana said.
“Also by putting back the cells that make insulin, we hopefully have reduced her requirement for insulin … [so] she will not be a brittle diabetic.
“It is the best option … for Hayley at this point in time.”
The whole surgery takes up to eight hours.
However, SA Health is in the process of buying the cell isolation machine which would reduce the travel time to Melbourne and cut surgery time by up to four hours.
More transplants intended for SA
Unfortunately, while under the knife, Hayley developed a complication known as adhesive bowel obstruction, which is a risk of abdominal surgery.
She spent several weeks longer than expected in hospital, but was not too phased by the delay and said she had enjoyed her time in Adelaide.
Hayley receives treatment from a nurse while in hospital in Adelaide. (ABC News: Claire Campbell)
“It’s been fun. Starlight [Children’s Foundation] comes around and it’s nice just having Mummy there with me,” she said.
“I’m feeling a lot better. I’m excited to see all my friends and family.”
South Australia’s Health Minister Stephen Wade said the Women’s and Children’s Hospital hoped to perform the transplant on more children with pancreatitis around Australia — and even overseas.
“It’s great to see not only South Australian children benefitting from the skill and compassion of our clinicians but also children from other parts of Australia,” he said.
“We’re all part of a national community and for years now, South Australian children and adults have had to go interstate to receive care. It’s great to be able to share the services that we’ve been receiving from other states.
“The clinical team … has been able to build up its expertise particularly by recruiting specialist clinicians from overseas, building their knowledge, building their workforce base.
“This is a world-leading technology.”