'Our 13-month-old has spent 8 months of his life in hospital. Here's what I want people to know.'

York Hutchison-Liston had his first open heart surgery at just four days old. The now thirteen-month-old has spent most of his life in hospital. 

Severe Aortic Stenosis was picked up on an ultrasound when his mum, Maddison, was still pregnant. The Hutchison-Liston family lives in Ballarat, where they were quickly transferred to the Royal Women’s Hospital in Melbourne to have Maddison closely monitored until York was born. Arriving at almost 36 weeks, her little boy went straight to paediatric intensive care to fight for his tiny life. He was there for 105 days until he was transferred to the cardiac ward at the Royal Children’s Hospital (RCH).

For Maddison and her husband Joshua, coming to terms with the diagnosis of their sick newborn was confronting enough, without the logistical nightmare of the family’s home and jobs being based over an hour away from their son’s treating hospital.

It was through this time of turmoil that they found help in Ronald McDonald House Charities Australia. The charity has 18 Houses throughout Australia that provide a homely and inviting place to stay for parents, guardians, carers and siblings while a child is undergoing treatment in a nearby hospital.

Maddison moved into a Ronald McDonald House the day she went into labour, which allowed her to spend every day by her boy’s side, whilst Joshua juggled work in Ballarat during the week, and joined her in Melbourne on weekends.

“Without the ability to stay so close to the hospital, we would have been in serious trouble financially. We wouldn’t have been able to afford to relocate to Melbourne,” Maddison says.

“And the help that staying at a Ronald McDonald House brought us physically and mentally, meant there was never a point where I wasn’t within 15 minutes of him.”

Image: Supplied.

In February, after five months of hospital life, York finally got to go home to Ballarat. The family was there for just five days before York’s health took a turn and they ended up back at the RCH.

“In Melbourne he had rhino enterovirus. He spent maybe two weeks there again until we could leave, then we got in the car and got 450 metres down the road and York went into cardiac arrest. My husband and I did CPR and called an ambulance which took him back to hospital.”

With York’s little heart failing, he needed oxygen day and night as he spent a further four months in the cardiac ward while doctors investigated the cause.

“We never came to a full conclusion,” Maddison recalls, “We were sent home, with oxygen and medication, for four weeks to wait for another procedure to check the pressure in his heart.”

York underwent the procedure in July and spent several more weeks in hospital before being given the all-clear to return home to Ballarat.

York has spent eight months in hospital, which means Maddison lived each of those days in a Ronald McDonald House. It’s a lifeline she will forever be grateful for, a place where families like hers share more than just a roof, but moreover, their vulnerabilities, shared understanding and strength through the unknown.

Image: Supplied.

“You would spend time in the kitchen cooking your dinner or eating a donated meal, and other families would be in there too. Everyone is going through the toughest time of their life, so we would get very vulnerable and talk about what was going on in our lives,” Maddison recalls.

Those conversations made such a difference, as husband Joshua would have to stay working in Ballarat, separated from his family, during their family's "darkest period".

“Without the other families there, I would have felt very alone.”

The family has been back in Ballarat for almost three months now. It’s the longest they’ve spent there in over a year, as they anxiously await what’s next for their baby boy.

Image: Supplied.

“It’s all quite unknown,” Maddison admits, “York will definitely require something, possibly another surgery, between the ages of three and five years old. Until then it’s medication management with frequent appointments to the Royal Children's Hospital.”

With McHappy Day coming this Saturday November 18, it's an important day for Ronald McDonald House Charities to put children's health on the agenda and raise the funds to continue delivering support programs that directly impact the health and wellbeing of seriously ill and injured children and their families. 

In 2022, McHappy Day raised an astounding $4.8m. These funds not only help families like Maddison’s stay together and close to their child's treating hospital, but also support RMHC in delivering their many other vital programs.

These include Ronald McDonald Family Rooms that give families a break and respite from hospital wards; Hospitality Carts that support families at their child's bedside and offer free food and practical care items; Family Retreats for families in need to have important time together; and Learning Programs to help kids catch-up on missed education through one-on-one tutoring and tailored support.

“Buying a burger on the day makes such a difference,” Maddison states, “It gives more than I can ever explain. We wouldn’t have been able to get through what we did without RMHC.”

Learn more about how you can support Ronald McDonald House Charities to continue to deliver their many programs and services.

Feature Image: Supplied.