Chch boy to make surgical history

A Christchurch schoolboy is set to make New Zealand medical history by being the first to receive a joint liver and kidney transplant when a kidney becomes available in two to four years.

Eleven-year-old Jesse Pycroft, of Hornby, was recently diagnosed with the extremely rare condition of primary hyperoxaluria.

It means his body does not produce an enzyme which breaks down a chemical that has damaged his liver and both kidneys.

Jesse was this week told he will need the joint transplant to survive.

At the moment he must have dialysis for four hours a day, six days a week.

Jesse said he was not sure what to make of his upcoming surgery because he had been sick for a long time.

He was fed through a tube and had to take about 11 pills a day. After the double transplant he would need to take more than 30 pills.

It is believed only one other New Zealander, a Cantabrian, has had double transplant surgery. The operation was done in Australia.

Jesse's operation, which will be performed in Auckland, will be the first of its kind in this country.

Jesse's mother, Fay Pycroft, said the family had been on an emotional rollercoaster ride since Christmas when his condition deteriorated rapidly.

"I'll never forget Christmas Day. Jesse started vomiting and it went on for days. He was rushed to hospital and it all started from there."

Jesse's Christchurch doctors suspected he may have the rare disease he was eventually diagnosed with and sent him to Auckland for three months of tests, his mother said.

"We have been so incredibly stressed," she said.

"I have been crying every day and some days I was so depressed it was hard to get out of bed. It's no better knowing what he's got because now we are faced with waiting for a double transplant."

Fay Pycroft said doctors had told her it was likely to take between two and four years for a kidney to become available for Jesse.

His father, Wayne, was eager to donate one of his kidneys and a part of his liver, which would grow as Jesse did, Fay Pycroft said. However, this would depend on whether tissues were compatible and would require more than six months of tests, she said.

Jesse's medical problems, including more than 10 operations to break up kidney stones since he was three years old, have taken a toll on his family.

His mother was forced to give up her job as a caregiver to take Jesse to his daily dialysis appointments and the family have had to apply for emergency financial help over the past few months to pay for airfares to Auckland, medication and other bills.

However, the family, including 14-year-old Crystal and 18-year-old Jamie, are determined Jesse's illness will make them stronger, Fay Pycroft said. "Every day brings new information which is scary but we are in this together and we'll face the best we can."

Jesse's Christchurch Hospital paediatrician, James Hector-Taylor, said his condition was extremely rare.

If you are the Christchurch man who had a double transplant surgery, or you know him, please email kim.thomas@press.co.nz or phone 943 2640.

- © Fairfax NZ News