After spending his entire life at The Royal Children’s Hospital, Zachary Kelly defied the odds and went home last week.

The little fighter was born with a devastating condition, where parts of the left side of his heart did not form properly. The condition, known as hypoplastic left heart syndrome is so rare that just a dozen babies a year, from all over Australia, are treated for it at the RCH.

RCH cardiac surgeon Associate Professor Yves d’Udekem says babies with this condition are born without or with a very small left ventricular cavity, which is the chamber that pumps blood from the heart around the body.

Zachary’s illness was picked up in a routine scan 22 weeks into Mrs Kelly’s pregnancy, and she moved from Adelaide to Melbourne to give birth. Born at the Royal Women’s on November 30, he was transferred straight to the RCH, on the day the new hospital opened.

At two days old Assoc Prof d’Udekem and his team performed the first of three operations needed to save Zachary’s life.

Zachary’s illness was at the worst end of the spectrum because as a fetus, for reasons not fully known, a valve in his heart was completely blocked, leaving the walls of his main pumping chamber so thick, making it difficult for his heart to move well, Assoc Prof d’Udekem says. After his first operation Zachary’s heart was so weak he had an artificial heart doing its work for four days.

Mrs Kelly says: “They didn’t think he’d come off the (heart) machine … but he surprised them.”

The Kellys very nearly lost Zachary in the following weeks when he suffered a cardiac arrest. Assoc Prof d’Udekem says: “His heart was a big concern … for a long time we were not thinking that he would make it.”

“So there’s been a couple of times we’ve nearly lost him, but he’s a fighter, he’s a strong little boy, he keeps hanging in there,” Mrs Kelly says.

And with a name like his, why wouldn’t he? Zachary means remembered by God. “We wanted a really strong name, and Zachary is just that, we’d expect nothing less from him,” she says.

And he has lived up to his name. Since his last brush with death, he hasn’t looked back, going from strength to strength.

Words by Marianne Betts.