This October, Cooper and his family will join the HeartKids community at the Rockhampton Two Feet & A Heartbeat walk.
His mother, Ebony, shares the story of her 4-year-old son and their family’s journey through diagnosis and open-heart surgery, and the support they found through HeartKids.
Can you tell us about Cooper’s heart journey?
Cooper was diagnosed with an AVSD at 6 months old. He was booked for surgery at 12 months but it was cancelled twice because he was unwell.
He finally had open-heart surgery at 18 months old, after spending a week in Brisbane to make sure he stayed well. He is doing well now, but still has moderate valve leakage and may need more surgery in the future.
How has HeartKids supported your family?
HeartKids made a huge difference during one of the most stressful times of our lives.
While Cooper was in hospital, there were meals available for families, heart beads to recognise all the milestones he achieved, and regular family catch-ups and morning teas where parents could connect with others going through similar experiences.
I remember seeing HeartKids information all around the ward and thinking how amazing it was to have that support there when everything felt so overwhelming. What we experienced in hospital was only a small part of what HeartKids provides, and it has made us really appreciate how important their support is for heart kids and their families.
What do you wish more people understood about childhood heart conditions?
I would like people to understand that childhood heart conditions can be very much a “wait and see” journey.
Even when your child looks well, there can still be regular appointments, uncertainty and the possibility of more surgery in the future.
It can be hard not knowing what the next step may be, and it affects the whole family.
What would you say to another heart family?
You are not alone. The heart journey can be overwhelming and uncertain, but there is so much support available.
Take things one step at a time, ask questions, lean on the people around you and celebrate every little milestone along the way.
To support families like Cooper’s, register to attend your local Two Feet & A Heartbeat walk today.
