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RECENT NEWS & EVENTS

Lunch in the Heart of Sydney

Sep 04 2023
Lunch in the Heart of Sydney Friday 29th September 2023 This year the Heart Centre for Children and Kids Heart Research are coordinating our firs...

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...

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:

Paris tells us about her experience with SVT

Paris tells us about her experience with SVT

Nine year old Paris stood up in front of 196 guests at the Echo Gala Dinner in September 2013 and bravely shared her story with us, that she wrote with very little help from her parents:

My name is Paris and I am here to tell you about how I lived with SVT, aka Supra Ventricular Tachycardia.

What is SVT?

SVT is a heart diagnosis which makes your heart speed up to what is really scary and I guess mind-blowing really.

I am here to tell all of you about my journey with SVT, which went as follows.

It all started when I was visiting my first cardiologist Dr Cooper back in 2011- late 2012. I was way, way too scared to have a ECG whist I was in SVT mode. But I now know that with anybody you know that has a racing heart of any kind, you should always encourage an ECG. But when I was visiting Dr Cooper like I said I was too nervous to have an ECG. So Dr. Cooper could not tell what was wrong with me.

But on one special Friday lunch at school in the playground, when I was running during a simple game of tip, I felt an abnormal beat from the heart. That's when I thought I needed an ambulance so I rushed to the school nurse ASAP and said "I have an unknown heart condition and I was told to call a ambulance straight away".

But unfortunately the nurse wasn't really sure what was going on, so she told me to sit down for 15 minutes. Then she phoned my mum and my mum explained to her that I needed and ambulance. So then she called the ambulance and the ambulance arrived really quickly. And they did a great job of taking care me.

While I was in the ambulance, my heart managed to stop racing. By holding my breath for around five seconds, it began to go slower and slower until it reached normal speed.

I was in the Emergency ward for a while waiting for a Cardiologist to send a letter that I was able to leave hospital that night.

In a few weeks time, I met my second cardiologist Dr Turner. Dr Turner was a very good cardiologist and a really nice person. Dr Turner told me that I had a heart condition called SVT and explained to my parents that I need an operation to either freeze or burn some of the electrical pathways in my heart. This meant I had to have an operation in hospital.

The operation - take 1

The first day scheduled for my operation was in April 2013. On the day of my operation, my supportive brother and parents were there to comfort me. We were in the waiting room for around 6 hours, when I was fasting.

But then Dr Turner took us into a private room and told us that the machine they needed was not working. The machine had malfunctioned. Dr Turner was upset and told us that the next spot available was not until June.

The operation - take 2

The day before my operation my mother had a phone call that one of the cardiologists was not available.

The operation - take 3

The operation finally went ahead the next week. I wasn't nervous like the first time around. It finally happened. Woo hoo!

The operation went really well and although I was nervous when the anaesthetist put the mask on my face, I kind of freaked out. I panicked and lashed out. But then I said to myself "hang on, calm down and it will be over as soon as you know it". And I was right! It was over as soon as I closed my eyes. It was a stressful four and a half hours for my brother and parents though.

Then the next day I was ok, but I was not able to walk. Then I was able to walk several days later. I cried as the anaesthetic was strong. It may have a different effect on different people.

Conclusion

It feels so much better now to run around and be like a normal kid. But before that I was teased and bullied as I had put on weight as I couldn't do sport.

If there are any parents out there worried about their child’s operation, I would recommend the procedure.

But last but not least I wanted to say a big THANK YOU to Dr Turner, Dr Cooper, Dr Lau and all of the team at the Heart Centre for Children in Westmead. You have changed my life for the better and I thank you a lot.

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