Father’s heartbreaking fight for medical justice
FATHER of four Andrew Humphreys admits he stole a page from his daughter's medical records at Lismore Base Hospital.
"I took it because there were letters from doctors who had initially misdiagnosed Paige, offering to support her overseas surgery," he said.
"These letters were withheld by Northern NSW Local Health District."
Mr Humphreys trusted his gut instinct about what was right for his daughter and fought hard against a system he believed wasn't serving her.
After a decade of struggle, 12-year-old Paige is healthy and in the top 10 in her year group, despite being homeschooled for three years due to ill health.
The Bora Ridge father was shocked by what he saw on the medical records about himself and wife Victoria.
Mr Humphreys claims they were labelled as mentally ill due to their disagreement with a doctor and family interference over Paige's diagnosis, and he was accused of child abuse due to Paige's extreme bruising.
"We didn't know about the accusations and we were confused why the doctors wouldn't take us seriously," he said.
Paige was forced into a regimen of weekly testing and treatment for a virus she never had, against the family's will, Mr Humphreys said.
"Four years later when she vomited more than three litres of blood, our claims were shown to be 100 per cent correct with a blockage to her liver, but by then there was no fix available in Australia," he said.
Paige suffered through countless surgeries in an attempt to control her extreme bleeding, but her liver began to fail, making the problem much worse.
The surgery Paige needed for her rare medical condition ‒ called hypersplenism, pancytopenia and non-cirrhotic portal hypertension secondary to extra hepatic portal vein obstruction ‒ was not available in Australia.
In 2018 when she went to Chicago for an operation with Dr Superina, nicknamed Dr Superman, she was further diagnosed with pulmonary hypertension.
When Paige started to show symptoms consistent with pulmonary hypertension in 2014, Paige's parents sought further diagnosis, which the hospital doctors said was asthma.
"It turned out to be multiple organ failure, but we could not get that confirmed in Australia, as we were still being tarred with the brush of earlier false claims against us," Mr Humphreys said.
He began to search the world for answers, and everything pointed to Dr Superina in Chicago.
The Humphreys family began the year-long process of raising several hundred thousand dollars for the procedure.
"When we arrived in Chicago, Dr Superina was visibly shocked by Paige's condition, labelling it the most severe he had ever seen," Mr Humphreys said.
To complicate matters, Paige's "viral asthma" was congestive heart and lung failure.
"The pressures in her heart were so severe Dr Superina was surprised she was still alive," Mr Humphreys said.
"We were told she was one of seven patients known with severe porto-pulmonary syndrome, of which three had survived."
By then the chances of a successful surgery were slim, so Paige's surgery was delayed for three months while the family tried everything to improve her chances of success.
"The Chinese medicine and cannabis oil we were always warned against worked a treat, boosting her liver function and vitality dramatically, bringing her liver function back within normal range," Mr Humphreys said.
The intense treatment for her heart and lungs reduced the pressures to a potentially survivable level, so they took the plunge.
As she was wheeled off for surgery, Paige asked her parents to take her body home and bury her underneath the cedar tree in the front yard.
For three weeks after Dr Superman's surgery, Paige's body failed many times and she was kept alive with life support machines and powerful drugs administered to her heart and lungs.
Nine months and two interventions later, Paige was discharged with a clean bill of health with follow-up visits every three months to Chicago.
Two years after her successful surgery, Mr Humphreys received an apology from Queensland Health under direction from the Health Ombudsman, offering to support her medical treatment overseas and outlining five key policy changes the family had recommended, including that no patient be offered or refused treatment without all appropriate testing.
Northern NSW Local Health District chief executive Wayne Jones said it had been a long and difficult journey for Paige and her family.
"On two occasions, Northern NSW Local Health District has reviewed separate aspects of Paige's case, but did not find grounds for any further course of action in either instance," Mr Jones said.
"We take patient safety and clinical care extremely seriously, and if there are new concerns regarding the care provided by our staff, these should be formally submitted, either to our LHD or to the Health Care Complaints Commission."
Since Paige's recovery, Mr Humphreys has had requests from other parents overwhelmed by what they considered inappropriate treatment.
"If I were a doctor, I'd be upset about the health service undermining my patient's treatment and my reputation," he said.
Mr Humphreys referred two patients to more appropriate specialists within Australia, and two others overseas to Dr Superina.
Grace Street from Hobart is having her surgery this week in Chicago after Mr Humphreys organised a fundraiser for her.
"I know other kids who need this treatment and aren't getting it," he said.
"I will get Dr Superina to Australia."