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Rising Star Award

Feb 22 2022
We would like to congratulate Dr Gillian Blue from Kids Heart Research, Heart Centre for Children who was awarded the Rising Star Award at the 2021...

Coronavirus (COVID-19)

Mar 27 2020
Many people in our community are feeling worried about COVID-19, our team is here to support you. Please visit our dedicated COVID-19 informati...

Team Harley - City2Surf 2017

Jun 27 2017
Mum Danielle puts it beautifully: "Why we started Team Harley: To raise awareness for Congenital Heart Disease in memory of our amazing...

Patient Stories

Every patient and family that we see has a special story to tell, and many of you have told us how important it is to know what others have been through.  So we have started collecting patient stories, and here a few that families have shared with us so far.

To send in your own story, please fill in this online questionnaire or contact the Heart Centre Manager on (02) 9845 3043.

Quick links to stories:

Ethan's aortic atresia

Louie's open heart surgeries

Max's Tetralogy of Fallot

James' story

Thomas' complex heart

Saison's story

Chase's HRHS and Pulmonary Stenosis

Kyle's story, 20 years on

Charlie's donor heart valve

Our courageous Holly

Milla's tetralogy of fallot

Oliver's coarctation of the aorta

Ellah's VSD

Paris tells us about her experience with SVT

AJ's journey with HLHS

Luke's journey with Wolff Parkinson White Syndrome

Daniel's heart transplant

Ethan's heart journey



Patient Story:

Max's Tetralogy of Fallot


Written by his father, Michael, in 2016

It was 15 September 2000, the day of the opening ceremony of the Sydney Olympics. My then partner and I had a scheduled routine ultrasound at the 20 day gestation mark. The mood was buoyant and we were excited to get a glimpse of our impending bundle of joy.

That excitement dramatically changed when we were told our baby had an abnormal heart. They couldn’t tell us what exactly at that point but we would need to see a specialist the following week.

After a terrible wait we were told our child had Tetralogy of Fallot. This meant that our baby’s heart had formed but with significant abnormalities. Essentially, he had all the parts but they were in the wrong place and it would need to be fixed surgically if he was to survive.

We had to change hospitals for the birth as we would need to have infant ICU facilities as he was likely to be underweight and blue (cyanotic or short of oxygen). To our surprise and delight at the birth, our baby boy Max was big and pink.

Max managed to get by for the first few months of life without too much difficulty but at the age of 4 months he was admitted to The Children’s Hospital at Westmead for major heart surgery. 

The surgery was a success and after two weeks recovering in the Edgar Stephen ward, he was right to come home, repaired and with a cool scar to show for his troubles.

Max would go on to have a relatively normal childhood. Cheeky and playful he was like any other child. He went to childcare and was extremely sociable. His progress was supervised with 6 monthly visits to his cardiologist.

When Max was 4 years old, his cardiologist was not happy with the development of his pulmonary artery and the valve that connected to the heart. We went back to Westmead for a heart catheter where they ballooned the artery to stretch it larger. This seemed to do the trick and with yearly reviews by his cardiologist Max has needed no further surgery or medication.

He is now a precocious 15 year old with all the challenges of any teenager. While he was devastated to have to give up soccer at 14, he remains active with sport and is a keen cricketer and golfer. Max has recently been selected to represent the northern beaches regional cricket team.

So while Max’s beginnings were very difficult for us all, he has gone on to recover and exceed all our expectations. Apart from the cool ‘zipper’ scar no one would know of the journey he endured in those early days. Max now acts as a role model for his young brother Louie who also has a form of congenital heart disease, called tricuspid atresia.

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