Patient Stories

The idea of heart failure in children is a difficult subject, but one that needs to be in the public consciousness. The purpose of these videos is to increase awareness of childhood heart disease and heart failure in children, shared through the eyes of the patient and their family members.

These personal stories highlight the lifelong impact these conditions have on patients and their families. It is our hope that these honest, engaging, relatable and hopeful videos will resonate with other patients and families going through their own journeys, whilst also stimulating discussion in the wider community.

The videos also touch on the hope offered by the research being performed at the Melbourne Children’s Campus, which has the potential to transform the lives of future children.

The Murdoch Children's Research Institute and HeartKids would like to thank this incredible group of patients and parents for being so generous with your time in sharing these vital stories. A big thank you also to Justin Hutchinson and the team at LifeBuoy Video for their help in producing these videos.

This video is the first in the series and introduces the audience to our patients and parents as they share their experiences of living with childhood heart disease and heart failure.

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The story of a young man and the broader challenges faced by indigenous patients with childhood heart disease. This video captures an important conversation shared between a young man and one of the Royal Children’s Hospital Wadja Aboriginal Family Place case workers.

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A picture of what children and parents are faced with at the pointy end of heart failure, with a particular focus on mechanical hearts, known as Ventricular Assist Devices and heart transplantation.

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A snapshot of the lived experience of patients with congenital heart disease, with a particular focus on the journey of patients born with a single ventricle who have since had the Fontan procedure.

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A rare insight into a parent’s understanding of heart failure and the perspective of raising a child who has experienced heart failure.

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Patient and parent perspectives of life beyond heart failure and the hope that research offers to transform the lives of children with heart failure.

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