A nine-year-old boy is settling back into family life after becoming the youngest person in the UK to undergo a marathon, life-saving surgical procedure that involved removing the pancreas and injecting its insulin-producing cells into the liver.
Archie Routledge, from Workington, in Cumbria, has a rare genetic condition that causes hereditary pancreatitis. It inflames the pancreas causing debilitating abdominal pain and significantly increases the risk of pancreatic cancer in later life.
Archie’s mother, Emma Routledge, said he became ill when he was five. “He would roll around in pain and scream,” she said. There’s no cure or medicine to treat pancreatitis so the family had to give him morphine at home, “which was frightening”.
After a five-month stay at the Great North Children’s hospital in Newcastle surgeons found a “window of opportunity” to carry out a procedure called a total pancreatectomy and autologous islet cell transplant. It involves removing the pancreas and at the same time transplanting the patient’s own insulin-producing islet cells into the liver.
The challenging 15-hour surgery, involving a number of specialists in different areas, has never been carried out on anyone so young in the UK.
Archie’s parents, Emma and Mark, took time off work to stay with him in hospital, while his grandparents moved in to look after Archie’s sister, Halle, 11.
In hospital, Archie was unable to eat, receiving nutrition through a drip.
“Being away from home and our daughter with the stress of fighting for the operation was a really tough time for our family,” said Emma. “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.”
The transplant surgeon Prof Steve White was involved with the first operation of this kind when he was training in Leicester, and has since carried out the procedure on adults, but never anyone as young as Archie. “We are quite unique in Newcastle as we have the skills to do many different types of complex transplant operations,” he said.
White said that taking out the pancreas makes a patient diabetic, “so they must then take insulin to prevent them having complications, such as blindness and kidney failure”.
The hope is that re-infusing insulin-secreting islet cells from the pancreas into the liver will mean Archie can produce some of his own insulin.
“He still needs insulin, as his pancreas was extremely damaged,” said White. “Over time he’ll have better control of his diabetes because he has some of his own cells still producing insulin.”
Archie’s genetic condition affects just one in 375,000 children and meant he had a 40% higher chance of pancreatic cancer later in life.
His treatment was far from straightforward, as it could be done only when the pancreas and resulting inflammation had settled down. The hospital also needed funding and an agreement at national level for a procedure that is not routinely commissioned on the NHS for children.
His mother recalled the day of the operation. “On the morning, we held back our tears as we gave Archie kisses and said: ‘See you soon.’ 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 is now recovering at home in Workington and making good progress.
