Sending in Your Referral
Support Us


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:

Saison's story


Shared by Saison's Mum, Kat, in 2016

Our gorgeous boy Saison entered the world on the 18th May 2015. An amazing and supportive team at Westmead Hospital let us have a few special moments of skin-to-skin cuddles before they whisked him away. Once they managed to stabilise him he started the journey down the corridor to the Neonatal Intensive Care Unit (NICU) at The Children’s Hospital at Westmead. Here, he would spend the first 11 weeks of his life.

Saison was born with a genetic condition called Di George Syndrome (also known as 22q11.2 deletion, or VCFS). He was diagnosed with multiple Ventricular Septal Defects (holes) in the heart along with a narrowing of one of his pulmonary arteries. Saison’s heart has been described as similar to “Swiss cheese” due to the number of holes in it.

He was also born with choanal atresia where there is a narrowing or blockage of the nasal airway by tissue. So when he was three days old he was off to theatre to have this repaired.

When Saison was 6 weeks old he had his first open heart surgery where they undertook a banding of his right pulmonary artery. Post-surgery was one hell of a roller coaster for us. We nearly lost him a couple of times but the doctors, surgeons and nursing team would not give up. Saison stabilised eventually and then proceeded with a slow recovery.

When Saison was 11 weeks old and after many sleep studies, CPAP trials and oxygen adjustments we were discharged home to Canberra.

The next few months consisted of hospital admissions; follow up appointments and more medical appointments.

Then at 9 months old, Saison had a cardiac catheterisation. Here a device was released into the central wall of his heart to close the biggest hole.

The following week Saison was straight into theatre again for open heart by-pass surgery to close the remaining holes and remove his PA band. This operation took 10 hours to complete. Following surgery, the surgeon sat and talked through the whole surgery with us from start to finish. She has done an incredible job in repairing Saison’s heart.

After a slow recovery once again Saison finally made it to the Edgar Stephen Ward where he received a very warm welcome by all the nursing staff. Two more weeks of easing back into our daily routines and we were home again, but this time without the oxygen tanks. Yay!

He still has a long way to go with his feeding and development but our strong, happy, clapping boy is living proof of what an amazing team of doctors, surgeons, cardiologists and nurses can do. There are no words to describe how thankful we are to each and every one of them. They gave us our son’s life, and we will be forever grateful.

View Page

< Previous | 234567891011 | Next >

Contact UsPrintBookmark SiteTell a Friend