Family calls for Government compassion in fight to save 10-year-old girl who needs life-saving surgery

Posted June 02, 2017 18:23:30

The family of 10-year-old Paige Humphreys, who has a rare illness that could see her bleed to death at any moment, is calling on the Federal Government to step in and help fund her potentially life-saving surgery overseas.

Paige has a condition called hypersplenism, pancytopenia and non-cirrhotic portal hypertension, which blocks the blood flow from her digestive organs to her liver.

Her father, Andrew Humphreys, said the condition had resulted in Paige bleeding internally several times, and needing to be flown to Brisbane from her home in the northern New South Wales town of Coraki for emergency surgery.

"It affects all of her organs in many different ways," Mr Humphreys said.

"Her liver is dying through a lack of blood supply."

Mr Humphreys said the condition was caused by a staph infection contracted while in hospital when Paige was a baby.

He said the infection was not immediately diagnosed, and it then took four years to correctly diagnose Paige.

"When we left the hospital after she was born there was a little bit of pinkness around her umbilicus, and we ran it by a few doctors and nurses and they said it was nothing to worry about," he said.

"Unfortunately that was bad advice and that's where everything started."

'Time is running out'

The Humphreys have been crowdfunding to help cover the $300,000 cost of a portal vein reconstruction for Paige in the US, to be performed by doctor Riccardo Superina, who has given them an 80-90 per cent success rate to correct the condition.

They have also put their home on the market to help fund the trip and procedure.

"Time is running out for Paige," Mr Humphreys said.

"We would rather her live in a caravan than die in a house."

A different procedure, known as a standard rex shunt, is available in Australia, but four different surgeons have advised the Humphreys that the Australian procedure had a success rate of 50 per cent or less.

Mr Humphreys has applied for funding for Paige's surgery in the US through the Australia Medical Overseas Treatment Program, but has been denied on the basis that "effective" treatment is available in Australia.

"We're arguing over the definition of 'effective' when it comes to the Medical Overseas Treatment Program," Mr Humphreys said.

"The Government bases 'effective' on the type of surgery they offer rather than the odds of success.

"None of the Australian surgeons we've spoken to are confident that the Australian surgery would be successful."

Federal MP says stronger evidence needed

The Humphreys' local federal MP Kevin Hogan said he had lobbied on the family's behalf, but the Government needed stronger evidence that the procedure in the US would be more successful than that offered in Australia.

"The Australian option is there, but I understand Andrew's and Paige's nervousness about that," he said.

"But we need something from an Australian medical professional, who isn't going to give it to our independent body, recommending it [the treatment overseas].

"If they said we need to do it overseas, it's not good enough odds here, we as a Government would do it tomorrow."

Mr Humphreys said he had sought written confirmation from several Australian medical professionals recommending the overseas treatment, but they would not sign an application.

He said one doctor told him they were worried about setting a precedent that would see more patients seeking federally funded overseas treatment.

Calls for compassion

Mr Humphreys has now started a petition calling on the Federal Government to intervene on compassionate grounds, and to fund Paige's trip and surgery in the US.

"We've asked for compassionate consideration because she caught this in a hospital," he said.

"Because Paige went undiagnosed for so long it made the problem worse.

"By the time we had a definitive diagnosis, we had exceeded the statutory period for complaints to be investigated by the federal or state health care commissions.

"And by the time the real problem was discovered, she was no longer an effective candidate for suitable surgery in Australia, due to the fact her body had kept growing and the veins in her liver had not.

"We're calling for the Government to take some responsibility."

Northern New South Wales Local Health District chief executive Wayne Jones said his staff met with Mr Humphreys in 2011, but did not find grounds for a formal investigation into Paige's treatment.

Mr Jones said a review had commenced after Mr Humphreys raised further concerns in December 2016.

Topics: health, health-policy, coraki-2471, lismore-2480, brisbane-4000