The National, Wednesday 22nd August 2012
A MYSTERY growth on his head had made it impossible for Ivan-Joe Leo to crawl, speak or even sit up.
It was not only restricting the quality of his life, it was threatening to cut it short.
Now, at 20 months, he has been transformed into a typically fearless toddler with a new lease on life, thanks to a series of extraordinary operations at Monash Children’s Hospital, Melbourne.
Ivan-Joe, who was brought to Australia through Moira Kelly’s Children First Foundation, had a football-sized lump on his head that was filled with fluid.
Monash neurosurgeon Chris Xenos said Ivan-Joe had probably suffered a fractured skull, called a traumatic cranial encephalocoele, during a difficult labour in Papua New Guinea.
Excess fluid built up on the brain and the fluid began to leak into the lump.
By the time he was six months old, the tennis ball-sized lump had doubled in size.
“It was really big and I was scared, so I took him to the hospital,” Ivan-Joe’s mother Joseyne Sari said.
Her son needed an operation she could not afford.
She was told the growth, which was already affecting his development and eyesight, could cost him his life.
“I had to do something to fix it, to show him he can live,” she said.
“The taunts and stares were also hard to take.
“Everyone would say ‘what kind of a baby is that?’
“Even his big brother, who is just three, would say: ‘I don’t want this baby; he’s got a really big head. Mummy, can you take him back to the hospital?’”
Luckily, Sari was put in touch with the Australian charity, Moira Kelly’s Children First Foundation, who organised his flights, visa and passport, and liaised with the hospital, which provided a humanitarian bed and its services at no cost.
Xenos said the first part of his treatment involved improving Ivan-Joe’s fluid circulation by inserting a shunt, which diverted the fluid out of his head and into his stomach.
“His head became like a volcanic crater, the fluid drained out of his head and the lump collapsed,” he said.
Within six weeks, Ivan-Joe became more responsive, playful and vocal.
Xenos and plastic surgeon Charles Baillieu began the process of sealing his brain and rebuilding his skull.
“We harvested bone from his skull, cut it into strips and attached it using approximately 50 absorbable screws and plates,” Xenos said.
The bone will eventually grow over and cover the skull.
Ivan-Joe spent weeks in hospital recovering from the operation and fought off fevers and an infection.
“He is moving, playing and speaking, and I think his long-term future is very good,” Xenos said.
Sari was overwhelmed by the results.
“Two months after the surgery, he started to crawl, and now he is trying to stand,” she said.
“He’s also more talkative and he’s not scared of anything.”
Mother and son will return to PNG at the end of the month after six months in Australia.