Levi was just one day old when a detected heart murmur led to the diagnosis of childhood-onset heart disease (CoHD). At 11 days old, he underwent life-saving heart surgery, followed by 24 nights in hospital far from his family’s home in Broome, WA.
Levi’s mum, Rosalyn, reflects on their journey, the challenges of navigating care far from home and the support HeartKids provided during one of the most challenging times of their lives.
Can you tell us about Levi’s heart journey?
We are a family from Broome, WA and our son Levi’s heart journey began just one day after he was born when a heart murmur was detected.
He was flown to Perth Children’s Hospital where he was diagnosed with Coarctation of the Aorta and a Ventricular Septal Defect (VSD). At just 11 days old, Levi underwent heart surgery to repair his coarctation. After 24 nights in hospital, we were finally able to bring our little boy home.
How has HeartKids supported your journey?
When Levi was transferred to Perth for heart surgery, our world changed overnight. Being away from our home, family and support network while caring for our newborn baby was incredibly difficult. HeartKids helped us feel seen and supported during one of the most challenging times of our lives. The kindness they showed our family is something we will always be grateful for and it’s one of the reasons we’re so proud to support HeartKids today.
What do you wish more people understood about childhood heart conditions?
I would like people to understand that a childhood heart condition is not just one surgery or one hospital stay. It can mean months or years of appointments, travel, uncertainty and learning to celebrate milestones that others may take for granted. Behind every heart kid is a family navigating that journey alongside them.
What would you say to another heart family?
You’re not alone. The road ahead may feel uncertain and overwhelming, but there is a community of heart families who understand what you’re going through. Take one day at a time, celebrate every milestone, no matter how small and remember that it’s okay to lean on others when you need to.
To support families like Levi’s, join your local Two Feet & A Heartbeat walk this October.
