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Zaviyar's Story

Zaviyar, Heart Kid

Zav is 6 years old and has Renpenning Syndrome which is a rare genetic condition. Along with many complex health issues, we are ever so proud to call him our amazing heart kid!

After a complicated yet straightforward birth, we felt something was not right with little Zav but we were assured that he was fine and were sent on our way as a new family of 3. From the day we got home to the first emergency room visit, we were in our own little world that we thought was normal, we new parents with a tiny baby who wouldn’t sleep, eat or stop crying. After 5 weeks, we noticed deterioration, he was struggling to breath and blue so off we went to ED. Turns out he was in heart failure, I still remember that day, the worst day of our lives!

Managed by Monash Children’s, we soon found out Zav had a 8mm VSD and mild pulmonary stenosis, thankfully with medication he pulled through and thrived, however that was short-lived. Unfortunately, 3 years later in May 2014 Zav had to have heart surgery due to complications of the VSD causing the aortic valve to prolapse, the second worst day of our lives!

Zav was handed over to the trusting hands of Yves d’Udekem and his team at the Royal Children’s. Yves managed to save and reconstruct his aortic valve and patch the VSD. The change in Zav was basically instantaneous! His health improved drastically and now just sporting trivial heart issues, he shows off a scar on his chest that he proudly calls his “zipper”.