Riley lying in hospital bed after surgery

Riley's battle with heart disease

"September 2000 is when our lives were blessed with the news that our family of three would soon become four."

Our 3-year-old Jake was excited with the news of having a little brother or sister due to arrive.

Our 18-week scan was no different from the first, we were keen to find out a due date and didn’t want to know the sex of the baby. We really had no concerns as I was only 27, and our first child had no health issues. But, this scan was the day our lives would change…

Newborn Riley after surgery

I was 20 weeks by this stage and after scans and further ultra sounds the cardiologist gave us the devastating news that our baby had a VSD, Transposition of the great artery and pulmonary Stenosis.

This news was overwhelming as we knew absolutely nothing about what we had just been told, all we heard was “open heart surgery”. I instantly felt scared, alone and guilty as I felt I must have done something wrong as a mother.

On June 29th, 2001 at 7:40 pm we welcomed the most precious gift life could give us… his name, Riley, weighing 7lb 3 oz. He was born with little blue lips and tiny blue hands and feet. I knew then he was tough, but he would need his mummy, daddy and big brother to be strong to get him through the toughest fight.

They took Riley straight to surgery where they had to go through his groin, up to his tiny little heart to scar the whole in his heart to ensure it didn’t close as the blood needed to flow through the hole. All went well and we could take our baby home and prepare ourselves for more surgery in 3 months’ time.

Three months later our beautiful baby Riley had to endure surgery again

We then met his surgeon, a man who had my trust and my whole life in his hands. The hardest part is handing you baby to a stranger, not knowing if you will see them or smell them or hug them ever again.

Riley had the procedure at birth, one at three months to insert the shunt, then the biggest to come when he reached the age of five, open heart surgery. The dreaded day arrived. What do you say to your child to prepare them for the worst battle of their little lives? As a parent, the anxiety and nausea is overwhelming and your mind and body is numb.

Then there is the watching of every second on that awful big clock on the waiting room wall while you baby is on an operating table with strangers.

As every minute goes over the scheduled time, you start to pace and want to just scream because you just need to know that soon you will be able to hold and comfort your precious child.

When I think back to these moments, I still get heart palpations. But, they are vivid memories that we all got through. They made us stronger and made us appreciate the little things in life because you never know what heart ache or journey the person sitting next to.

Teen Riley playing rugby

Six months after his second open heart surgery Riley was picked to play rugby league for Brisbane Poinsettias in Cairns.

He has since played touch football, and most recently has been chosen to play in the WORLD CUP for Australian Indigenous open men’s side

Let them be the person they wish to be even if it scares you, they learn to know their limits.

If I can pass on this story to not only kids that have to face these life changing challenges but to the parents of these amazing gifts… we can get through it! It makes us stronger, it brings us together and we appreciate every moment!

A wise surgeon by the name of DR Pohlner once said to me: "worrying is a waste of precious time" - Danielle, Riley's mum.
Acknowledgement of Country

The Victor Chang Cardiac Research Institute acknowledges Traditional Owners of Country throughout Australia and recognises the continuing connection to lands, waters and communities. We pay our respect to Aboriginal and Torres Strait Islander cultures; and to Elders past and present.

Victor Chang Cardiac Research Institute - The Home of Heart Research for 30 Years