Challenging start to life

SURVIVOR: Whangarei 8-year-old Tom Brown enjoys a normal life with hobbies such as surfing, mountain biking and duck-shooting. PHOTO/ SUPPLIED

Yesterday was International Rare Disease Day, but one Whangarei youngster with a rare liver disease spent the day swimming and bush-walking with friends.

Eight-year-old Tom Brown, who has biliary atresia, spent his third day of school camp at Pataua North with his fellow Whangarei Primary School Year 4 students.

Biliary atresia is a paediatric liver disease in which children are missing the bile ducts to drain bile from the liver, as well as the gall bladder. It affects one in 25,000 children.

Tom's mother, Katy Brown, is on the national committee for the Immune Deficiency Kids Foundation NZ (IDFNZ), which this year wants to use Rare Disease Day to raise awareness about paediatric liver disease. Symptoms include jaundice, poor weight gain, dark urine and pale stools. In Tom's case it was a dark, deep bruise on his spine when he was only weeks old.

"The earlier the child is diagnosed, the better - it makes a huge difference to the outcome," Mrs Brown told The Northern Advocate.

Tom was diagnosed at four and a half weeks old, and had surgery called Kasai a week later, which involved taking a piece of intestine to create a new bile tract from his liver.

"If he had the surgery a month later he could have died, or required a liver transplant," she said.

"We're just wanting to raise awareness and to give parents the confidence to seek help or a second opinion if their young child has jaundice."

After Tom's diagnosis there were six more hospital stays in both Starship and Whangarei hospitals, but these days he lives a relatively normal life, Mrs Brown said.

"Overall Tom has grown well and life has gradually become more normal. We see specialists every six months or so, and get scans annually, but otherwise he wouldn't see the doctor any more than any other child."

He enjoys mountain biking, duck-shooting, surfing and going bush, she said.

"His three scars, from his initial liver biopsy, his Kasai and his bowel surgery, are the only outward reminders of his challenging start to life."