AFP – Australian doctors Thursday hailed what they described as a world-first surgical treatment for a boy suffering from a rare disease that sends his blood pressure soaring and triggered a stroke.
Matthew Gaythorpe, 10, has suffered severe hypertension his entire life due to a combination of kidney and liver conditions called autosomal recessive polycystic kidney disease and congenital hepatic fibrosis.
He had a minor stroke last year and has lived with seizures and extreme fatigue requiring him to take about 30 medications a day. He was also diagnosed, at age four, with the chronic sleep disorder narcolepsy.
Gaythorpe was facing the prospect of daily dialysis, a dual kidney-liver transplant and even another stroke until his doctor was granted special permission to try a highly experimental operation with a custom-made device.
“Using innovative radio frequency technology, we were able to effectively zap some of the nerves and tissue surrounding Matthew’s renal arteries,” said surgeon Ian Meredith from the Monash Heart institute.
“This has resulted in a noticeable reduction in Matthew’s symptoms and blood pressure.”
Meredith’s plea to be allowed to try the renal denervation procedure — never before performed on a child and still experimental with adults — went before three separate ethics panels before it was approved.
The instrument used had to be specially designed for keyhole insertion into Gaythorpe’s tiny arteries by a US firm.
His mother, Alex, said the results had been incredible, with a noticeable improvement in her son’s behaviour which she described as more calm and focused, as well as a significant drop in his blood pressure.
“He has begun reading novels again,” she said.
“It may seem trivial but something he hasn’t been able to do for a while. He is also focusing more at school.”
Gaythorpe said her son “was often referred to as a puzzle with pieces that didn’t quite fit” but the surgery had given him a new lease on life, also putting off the prospect of transplants and dialysis.
“Avoiding that for as long as possible is a bonus. We now have hope,” she said.