How vital research can help kids live a life unlimited by congenital heart disease
His ‘half a heart’
When Lisa was 22 weeks pregnant, she and her partner, Curtis, received news that no parents ever want to hear – their unborn baby had hypoplastic left heart syndrome, one of the rarest and severe heart defects. Lisa and Curtis’ hearts were shattered into pieces, as they were given three options for their baby, Harley’s future – termination of the pregnancy, palliative care or three staged open-heart surgeries that had the potential of life-long difficulties.
After many conversations and tears, Lisa and Curtis decided to give Harley a fighting chance with the staged surgeries. Despite being diagnosed with mild tricuspid regurgitation – a leaky valve of the heart – at birth, Harley had his first open-heart surgery at five days old and second at 4 ½ months old.
An ongoing journey
While Lisa and Curtis were shown around the Paediatric Intensive Care Unit at Queensland Children’s Hospital before Harley was born, nothing could prepare them for the moment they first saw Harley following his initial open-heart surgery.
While the family was fortunate to head home between Harley’s surgeries due to their proximity to the hospital, he regularly returns for appointments to monitor his cardiac function, cardiac valves, blood oxygen saturations, growth and developmental progress.
During the times Harley has been in hospital, Children’s Hospital Foundation volunteers are a welcoming and friendly face for the family to lean on. Harley’s family regularly use the Foundation’s Book Bunker mobile program to loan books – he was also gifted a colourful quilt from the Foundation to brighten up his bed.
A life unlimited by serious heart conditions
For kids like Harley with congenital heart disease (CHD), there is a higher risk of neurodevelopment challenges, developmental delays and other learning, psychosocial and behavioural difficulties. Thanks to your generous support, the Children’s Hospital Foundation is helping to fund the extension of the CHD Life Program at Queensland Children’s Hospital to minimise the long-term impacts and support kids with heart disease to live their best lives. With this vital research, kids like Harley can live a life unlimited by their heart conditions – learning and developing friendships and interests like any other kid.
Harley continues to meet all his milestones and is expected to undergo his third open-heart surgery before he is five. He still may require a heart transplant at some point in the future.
The difference that shapes their world
Through supporting the Children’s Hospital Foundation, you can improve childhoods and ensure all children and young people have access to treatment - sooner.
