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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:

Thomas' complex heart


Shared by Thomas' Mum, Kelly, in 2016

At our 20 week ultrasound, the doctor told us ‘there’s a problem with your baby’s heart.’ It was devastating news. We met with a cardiologist during my pregnancy so they could plan for the birth of our first baby. When I was 38 weeks pregnant, we moved up to Sydney to wait for our baby to be born. On 24 July 2014, we met Thomas who was a beautiful and big 4.2kg! He was delivered at Westmead Hospital and just minutes after birth, his dad and a team of doctors wheeled him to the NICU at The Children’s Hospital at Westmead.

I had my first cuddle with Thomas when he was 6 hours old. Thomas has complex congenitally corrected transposition of the great arteries, with DORV, PDA, CoA, hypoplastic aortic arch and dysplastic aortic valve. When he was 7 days old, he had an enormous procedure on his heart. He was in theatre for 9 hours and the surgical team worked tirelessly to give him a new circulation that would keep him alive. He came out of theatre in an induced paralysis as he was hooked up to a machine called ECMO, which is like a small bypass machine. It was incredibly difficult to see our baby boy this way. He came off ECMO 4 days later and began his long road to recovery.

Some days, he was very blue. There were some issues with the pressure in his lung artery so he had another procedure to put a stent in. During that procedure, he had complete heart block, 2 minutes of CPR and a subsequent course of seizures. He was still not improving, and ended up on CPAP (a form of oxygen). He was starting to take steps backwards and we were terrified.

The team discovered that he was anaemic so they gave Thomas a blood transfusion. That was ‘Click’ day, when he finally started to get better, very quickly. We moved to the Edgar Stephen ward and were discharged home after 54 days in hospital. As soon as Thomas got home, he thrived.

When Thomas was 8 months old, he had his second open heart procedure called the Glenn. His surgery was on a Monday and we went home on the Saturday! Just 6 days in hospital.

Thomas now sees a cardiologist every 6 months and he will need to have another open heart procedure within the next few years. If his third procedure is successful, we expect he will grow up to adulthood and live a happy life.

Thomas is a pure delight to be around and is happiest when he is meeting new people and making new friends. He loves Giggle and Hoot and playing with his train set. Like most young boys, he is happiest when he is covered in some sort of muck. As Thomas is almost two at the time of writing this, his favourite thing is throwing temper tantrums. He makes us smile every day and is the sunshine of our lives.

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