Sunshine Coast family starts GoFundMe after medical issues prompt NSW move

A Sunshine Coast family is demanding change to the way hospitals communicate after they claim they were forced to move to New South Wales for their son’s medical care.

A Sunshine Coast family is demanding change in the way hospitals communicate after they claim they were forced to move to New South Wales for their son’s medical care.

A Sunshine Coast family who made a high-risk dash across the Queensland border desperate for another medical opinion for their son says they are now “stuck” in New South Wales because hospital staff would not pick up a phone.

Helen Malone is vowing to fight for change so other families do not face the same medical challenges they have over the past five years.

Colby Malone was born in 2016 at 23 weeks but, despite his head always being large, his mum claimed he was meeting milestones up until about his first birthday.

Ms Malone said issues began when doctors at the Queensland Children’s Hospital started taking fluid from his skull.

“As soon as they took fluid we ended up with six brain bleeds over 12 months,” the mother-of-two said.

A shunt is inserted to allow excess cerebrospinal fluid that has built up inside the normal fluid-filled spaces in the brain to safely drain into another part of the body like the abdomen.

Ms Malone said doctors started talking about palliative care options in 2018.

Helen Malone with baby Colby, who was born at 23 weeks.

“We thought they were giving up the fight, and we knew we had to find a way to get help for him,” Ms Malone said.

The family made a high-risk 12-hour drive to Sydney Children’s Hospital to see the neurosurgical team.

In children, palliative care is a holistic service that provides support to families and children of any age who have been diagnosed with an acute serious illness or a longer-term condition, or multiple conditions, that cannot be cured.

For children with life-limiting conditions, this support may occur for many years prior to end-of-life care, which refers to care provided in the last few weeks of life.

Colby Malone has been in and out of hospital since he was born in 2016.

The hospital spokesman said Children’s Health Queensland was committed to providing safe, high-quality person-centred care to all children and young people.

“In the interests of patient privacy and confidentiality, we are unable to comment on individual cases,” he said.

“Children’s Health Queensland respects the right of every patient and their family to seek a second opinion about their care and always supports such a request when clinically appropriate.”

Colby continues to receive care at the Queensland Children’s Hospital.

Ms Malone said at the New South Wales hospital the shunt was turned off, the brain bleeds were “cleaned out” and within hours of the surgery, Colby, then aged two, started putting weight on his legs after not being able to walk for more than a year.

She said the shunt was removed by the New South Wales surgical team a year later.

The family returned to the Sunshine Coast and Colby was well for three years and learnt how to walk, talk, eat, and was in mainstream school.

Ms Malone said he started having seizures in March 2022, then aged five, and she rushed him to the Sunshine Coast University Hospital but he was diagnosed with a virus and told to go home.

The family made another 12-hour drive to Sydney where a shunt was placed in his skull.

After talking with the Sunshine Coast hospital, an emergency management plan was put in place that included phoning the neurosurgical team in the Sydney hospital.

However, Ms Malone said that when Colby started having seizures again in April this year, the emergency plan was not followed and her son was diagnosed as having a headache.

Colby Malone during one of his hospital visits.

The family made a risky decision to fly to Sydney, which put more pressure on Colby’s head.

“If we left it any longer, he could have had more brain bleeds,” Ms Malone said.

“Each brain bleed it’s hard to get those (life) skills back.”

A Sunshine Coast Health spokeswoman acknowledged how difficult it could be for parents when their child was unwell, but said she could not comment on individual cases due to patient privacy.

“Our frontline staff are committed to providing the best possible care to our patients,” she said.

“Sunshine Coast Health has clinical guidelines for supporting emergency care plans and we are reviewing how these plans are used by clinicians in decision-making.“

A Sunshine Coast Health spokeswoman said she could not comment on Colby’s case and they were reviewing guidelines for emergency care plans.

When the family arrived in Sydney, with nothing more than what they had packed for the flight, Ms Malone said they were told they must stay close to the Sydney hospital.

Ms Malone, a disability support worker, and her partner Dwayne Rudduck, a carpenter, have given up jobs.

The Sunshine Coast home they bought sits empty and they have been separated from their ageing parents and grandparents.

Their 15-year-old son is at a new school and the family has no income but are looking for a rental in Cronulla.

They still have not told Colby the move is permanent.

The Cronulla community has been welcoming to Colby Malone and his family.

“It’s heartbreaking for him because he just wants to go home,” Ms Malone said.

“We have a home, we own a home, we weren’t really affected by the financial crisis but now it’s crumbled us.

“We can’t find a house down here, we don’t have an income.

“That’s why we’re scared.”

Ms Malone is determined to see change in the hospital systems.

She said her family’s situation could have been avoided had the Sunshine Coast University Hospital called the New South Wales hospital.

“I want something like Ryan’s Rule to be implemented to make sure states talk to each other,” Ms Malone said.

Ryan’s Rule is a process to support patients of any age, their families and carers, to raise concerns if a patient’s health condition is getting worse or not improving as well as expected.

The family has started a GoFundMe campaign to raise money while they look for jobs and a home in New South Wales.

Originally published as Sunshine Coast family starts GoFundMe after medical issues prompt NSW move