As a tiny infant, Ivan-Joe Leo had to be carried everywhere by his mum. He couldn’t crawl, speak, see properly, or even sit.
The doctors in Papua New Guinea knew what was afflicting him, but in a country where child mortality rates are amongst the bleakest in the world, they just didn’t have the resources to do anything about it.
Born prematurely, Ivan-Joe had developed a growth on his skull which by 22 months had expanded to the size of a small football.
His distraught mother Jocelyn Sari had run out of options. Her son needed an operation overseas that was far beyond what she could afford.
She was told the growth, which was already affecting his development and eyesight, could cost him his life.
As a last resort she was put in touch with the Children First Foundation – the Victorian-based charity that helps children in developing countries get medical treatment. The foundation organised flights and visas, and liaised with Monash Children’s Hospital in Melbourne, which provided a bed and its services at no cost.
On their arrival in February, a medical team under the leadership of Dr Chris Xenos and plastic surgeon Charles Baillieu began the delicate process of sealing Ivan-Joe’s brain and rebuilding his skull.
It would take a series of highly complex operations to remove the growth, but it could be done.
“The problem was that the traumatic skull fracture suffered at birth had caused a breach of the skull and it allowed fluid to leak through the defect,” Dr Xenos told Neos Kosmos this week.
“We had a two-problem issue – the cosmetic appearance and the developmental delay caused by excess fluid in his brain.
“In the first operation we opened up a fluid pathway to drain the fluid by inserting a shunt, which diverted the fluid out of his head and into his stomach.
“In the second more intensive operation we repaired the top of his skull by closing the coverings of the brain – harvesting the skull bone that was deformed and putting together a kind of patchwork quilt to seal the skull,” said Dr Xenos.
The final surgery was in May and after fighting off fevers and an infection, Ivan-Joe was discharged two months ago.
Since then he and mum have been accommodated at the Children First Foundation’s rehabilitation farm in Kilmore East.
Dr Xenos says that he’s well on the way to recovery and being able to live a normal life.
“It’s early days but he’s benefiting already from play therapy and physiotherapy.
“I’m optimistic he’ll continue to improve. He’s already demonstrated that he’s catching up and improving. He’s a lot more vocal and active. His long-term future is very good.”
Ivan-Joe’s mother told reporters this week: “I am very grateful for what they have done for my son. Now he’s a normal child.
“The surgery was like a miracle.”
After six months in Australia mother and son will return to PNG next week.