A WORKINGTON boy with a rare genetic condition has become the youngest person in the UK to undergo an operation at Newcastle Hospitals to remove his pancreas and transplant his own insulin producing cells at the same time.
Archie Routledge, 9, from Workington, carries a rare genetic mutation which causes hereditary pancreatitis, a serious condition where the pancreas becomes inflamed, causing abdominal pain and carrying a significantly increased risk of pancreatic cancer later in life.
The youngster spent five months in the Great North Children’s Hospital with pancreatitis and was unable to eat, receiving nutrition only through a drip.
Surgeons were able to use a small window of time when the pancreas had slightly recovered to carry out the life-saving operation.
Professor Steve White, consultant in hepato-pancreato-biliary and transplant surgeon at Newcastle upon Tyne Hospitals NHS Foundation Trust, was involved in the first operation of this kind when he was training in Leicester. He has since carried out this complicated procedure for mainly adults in the northeast.
Professor White said: “Archie has a rare mutation which caused him to have repeated inflammation of the pancreas and had been in hospital for over five months which was a real strain for his whole family.
“We had a window of opportunity when his pancreas settled down to operate and perform the transplant."
He added: “We are quite unique in Newcastle as we have the skills to do many different types of complex transplant operations.”
Archie on a visit to Newcastle United (Image: Supplied)
The 15-hour surgery saw Professor White lead a team involving paediatric surgeon Liz O'Connor, who performed Archie’s previous surgery, along with another surgeon Professor Sanjay Pandanaboyana, anaesthetists, pain specialists, psychologists, diabetes specialists, gastroenterologists and scientists.
Archie is now recovering at home and is making good progress. He first became ill aged five years old, when he suffered his first pancreatitis flare up, and was taken into his local hospital in Cumbria.
“He would roll around in pain and scream. There’s no cure or medicine to treat pancreatitis and the treatment was morphine and fluids,” said mum Emma, 36.
Archie's genetic tests came back showing a rare PRSS1 gene mutation which causes hereditary pancreatitis, and the family were told he had a 40 per cent higher chance of pancreatic cancer later in his life. The condition affects one in 375,000 children.
In the summer of 2022, his condition deteriorated and resulted in a pancreatic pseudocyst, a collection of fluid caused by pancreatitis which was squashing other organs.
Emma said: “He so weak and frail and was hospitalised over in Newcastle for six-weeks, spending his eighth birthday there to have an operation via a laparotomy to drain the cyst.”
Over the next year Archie struggled with flare ups on and off and found it hard to gain weight. He eventually struggled to run and keep up with his teammates at football.
Archie in GNCH (Image: Supplied)
“In November 2023 he had a week of the worst flare ups we had seen, screaming and rolling around again, with nothing we could do but give him morphine at home which was frightening.”
Mum Emma and dad Mark, 36, were off work and stayed in hospital with Archie whilst grandparents moved into their home to look after his sister Halle, 11.
The Sick Children’s Trust charity also supported the family, whilst Emma’s brother raised over £3,000 from the Manchester Marathon, and her workplace has also donated. The local community including Seaton Rugby Club and Workington Town Rugby club and the Bakers Dozen Cycle club have fundraising for the charity.
“On the morning of the operation, we held back our tears as we give Archie kisses and said, 'see you soon', said Emma.
"This was at 8am and we had an anxious wait until we were able to see Archie in intensive care at 11pm... 15 hours later. He remained on life support until the next morning, when they brought him round."
Archie remained in intensive care for a week, then moved back onto the ward which his family called ‘home’ to continue his recovery.
After a total of six months, being so far away from home, the family was allowed to take Archie back home to Workington.
“Being away from home and our daughter with the stress of fighting for the operation was a really tough time for our family. We are beyond relieved that we no longer need to fight the battle of pancreatitis and Archie can live his life pain-free.
“We hope that the breakthroughs in this surgery enable other children suffering from pancreatitis to recover and carry on with their lives.”
Archie now takes medicine and is gradually settling back into life at home with his family.
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