Levi was unexpectedly diagnosed with a heart condition just three days after he was born. What followed was an emergency transfer to Queensland Children’s Hospital for live-saving open heart surgery and a journey that his family could have never prepared for.
Now 5, Levi continues to amaze his family with resilience, energy and infectious personality. His mum, Juliana, shares his journey and the support HeartKids has provided along the way.
Can you tell us about Levi’s heart journey?
“Our journey as a family was very much a shock to the system…”
Levi was a postnatal diagnosis in 2021. Not just a minor diagnosis, it was a diagnosis that would change our life in seconds.
At just 3 days old, we were told of Levi’s condition and that he would be rushed to Queensland Children’s Hospital for emergency life saving open heart surgery. With a diagnosis of Hypoplastic left heart syndrome (HLHS) in the beginning, the outlooks were definitely scary for a family that didn’t even know this existed.
Throughout Levi’s journey, he has managed a Yasui procedure on his third open heart surgery at just 1 year old, giving him the outcome of a biventricular repair, a surgery that has only been performed a number of times in Australia. Even though this may seem like a better outcome, it has definitely brought some complications.
This hasn’t stopped Levi from being the bright, funny, energetic boy he is today! He lights up any room he’s in once the nerves are kicked to the curb! The amount Levi has endured in his 5 years of life, you would never know, and it makes us even prouder of how resilient he really is!
How has HeartKids supported your family?
The support HeartKids has given to our family, even in the toughest of times, has meant so much to us. From being there for our family and Levi in the hospital, to supporting us at home with monitoring supplies, cots, baths and staple foods to ensure a stress-free time in a stressful time. They have also supported Levi’s journey during his most recent stay, finding ways to make Levi’s hospital stay that little bit brighter.
We really couldn’t thank HeartKids enough and we know they would be there if we ever needed anymore support!
What do you wish more people understood about childhood heart conditions?
Every journey is different and sometimes these journeys can be isolating. Not just in hospital but also back in the community. As well as this, there is no cure for congenital heart disease, only minimal interventions to help improve the quality of life for these children.
What would you say to another heart family?
Trust your instincts. You’re not alone and the support is there.
To support families like Levi’s, register to attend your local Two Feet & A Heartbeat walk today.
