Samuel’s Journey with CHD

Submitted by his mum Louisa.

Sam was born with Congenital Heart Disease (CHD) and from very early on we knew that open heart surgery was very likely in order for him to live a full and healthy life. Diagnosed with a ventricular septal defect and an obstruction of the pulmonary value leading to pulmonary stenosis, Sam was under the management of Cardiologist Dr Lance Fong throughout his childhood. At the start of January 2022, when he was just 8 years old, we were told that Sam’s condition had progressed to a point where treatment was essential, and this needed to be via open heart surgery. This is where our journey with RCH really began!

Up until this point, Sam had been a happy and active kid, doing everything that his friends and brother were able to do and having what seemed to be boundless reserves of energy! Essentially if you hadn’t known he had CHD, you would be hard pressed to notice any difference.

Once Sam was referred to RCH and put onto the surgical waiting list however, things began to change. Unfortunately, because of the ongoing impacts of COVID to elective surgery wait times and because of the prevalence of CHD in the community, delays were lengthy, and Sam continued to decline. He started to experience symptoms including breathlessness and dizziness and could no longer partake in sport, play actively with his friends or eventually even climb a flight of stairs without being impacted. This had a huge impact on not only his physical wellbeing but on his mental health as well.

Throughout this ordeal, RCH and in particular the Cardiac Department and the Child Life Therapy department were amazingly supportive. The Cardiac Coordinator was in frequent contact and the Child Life therapist that we engaged with (Melissa Tolani – a truly gifted person) was instrumental in getting Sam through tests and investigations in the lead up to his admission.

Sam had his open heart surgery in April 2023. The care that he received from not only the Surgeons and Surgical staff, but the Nurses, Volunteers, Child Life Therapists and ancillary staff was exceptional. It takes a special set of people to deal with sick children and their stressed, anxious and often not at their best parents, every single day. We are eternally grateful for all that RCH has done for Sam and for us as a family.

Through the care that he received, through the acknowledgement by his care team that he was brave and strong, through the unwavering support when he most needed it, Sam has recovered so so well and has used his experience as a now 9 year old, to educate other kids and to raise awareness about CHD and the RCH.

His strength and resilience is an inspiration to myself, my husband and our broader family and he could not have done it without RCH.