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Saturday, June 19, 2021

Local family pushing boundaries to access paediatric healthcare

As the number of Australians vaccinated against COVID-19 continues to rise, so too does hope that it will mean the end of domestic border closures. 

There are no specialists in Canberra who can provide care for the complications arising from six-year-old Cooper Hadley’s craniofacial abnormalities. So his mother, Melissa, regularly drives him up and down the Hume Highway to access paediatric healthcare, often with his older sister Miley in tow.

“I’ve sometimes gone to Sydney and we’ve seen the specialist for 15 minutes,” Melissa said. “For that, we leave at the crack of dawn.”

Since he was born, Melissa and Dean Hadley’s son has been treated at a craniofacial clinic in Sydney staffed by ENTs (ear, nose and throat specialists), neurosurgeons, plastic surgeons, orthodontists, geneticists and ophthalmologists.

Dean’s work as a truck driver means he is often away, so Melissa organises their son’s continuing treatment.   

Next month, Cooper will spend at least six weeks in Sydney Children’s Hospital in Randwick for tracheotomy surgery, recovery and rehabilitation.

Grandparents and family friends will look after Miley in Canberra, and she’ll visit on some weekends, COVID-19 permitting.

Meanwhile, Melissa is crossing her fingers for a spot at Ronald McDonald House for the duration.

When Cooper broke his leg in August last year, Greater Sydney was recording new cases of COVID-19 daily.

After “much discussion”, Melissa said it was decided the Hadleys would drive to the Sydney craniofacial clinic in between appointments at a fracture clinic in Canberra.

But the fracture clinic refused to see Cooper for a follow-up, despite Melissa flagging their Sydney trips at the first appointment.

“I just flat out refused, I said ‘I’m not leaving, I’ll call the health minister’,” she said. “It gets to the point when you have to push the boundaries.”

More problems arose when borders between the ACT and NSW closed in December and quarantine was introduced for returning travellers.

Cooper Hadley driving in his toy car
Cooper’s favourite things include zooming around in his electric car and his mum reading bedtime stories.

Cooper has severe obstructive sleep apnoea which stops his breathing about 80 times an hour in his sleep.

Shortly before Christmas, Melissa noticed her son’s sleep apnoea playing up, and the Sydney clinic offered her an appointment available the next day – a rare opportunity when wait times were often six months’ long.

Melissa applied for an ACT Health quarantine exemption, with only a couple of hours to confirm the Sydney appointment.

Cooper has appointments in Canberra most days of the week, for speech pathology, physiotherapy, hydrotherapy, psychology, occupational therapy and nutrition. 

“I don’t have time for a lower-level public servant to tick a box and say, ‘No, we can’t give you an exemption’,” Melissa said.

But as she expected, the permit application was rejected; it was only after appealing to “senior public servants” that the decision was overruled, and an exemption granted. 

“They did accept my reasoning that the service wasn’t available in Canberra and I had to do it otherwise I’d be a burden on the system here.”

Melissa works full-time in the public service, which is a lot more manageable now that she can work from home. 

She said managing Cooper’s healthcare and “keeping on top of everything” could easily be a full-time job, with COVID-19 and potential border closures adding another layer of difficulty to the task.

In their downtime, the Hadley family like going on bike rides, to the pool, or to the park.

Cooper has an electric car he likes to zoom around the suburb in, and Miley is a competitive cheerleader, training five times a week.

Miley said her mum was special because she took care of them, and Cooper’s favourite thing was when his mum read bedtime stories. 

“It’s just what you do, you wouldn’t have it any other way really; whatever your kids need, you do it for them,” Melissa said.

  • Rosa Ritchie

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