While chatting with Amanda Tzafaris, her 18-month-old son Micah sat happily eating M&Ms off the floor, which she says he shouldn’t be doing, but considering he’s already had to fight for his life, she “doesn’t sweat the small stuff”.

At 32 weeks pregnant, Amanda was told any parent’s worst nightmare – her unborn son had at least three holes in his heart.

All she remembers from that blurry and frightful moment is being handed a pamphlet and a diagram of what Micah’s heart looks like and leaving with a long list of unanswered questions. A week later at Sydney Children’s Hospital he was diagnosed with AVSD, a congenital heart disease that created holes in the chambers of each side of his heart.

At seven weeks old, Micah was placed on heart failure medication to control the fluid in his lungs. When telling the story of Micah’s first few months of life, Amanda can’t help but recall the feeling of immense stress she felt – a constant surge of anxiety looking for signs of his breath slowing and logging every bottle to track his weight.

By the time Micah was four months old, he was showing symptoms of heart failure and was taken for surgery to repair the holes in his heart.

“I can’t put into words how difficult it was to hand him over to the surgical team knowing that his heart wouldn’t beat while they were working on him for a number of hours,” Amanda says.

“We were just hoping and praying for him to be okay, and it was quite overwhelming. On the other side, it was really inspiring and an honour to see how strong he was, and to see him fight every single day to get better.”

Celebrating every win became a lifeline for the family during Micah’s recovery – every canular removed, the removal of the intravenous line in his neck, seeing him fight off an infection, the wires connected to his heart being turned off – every step was one day closer to him heading home.

“It was a privilege to watch him through all of that. We didn’t have time to fall apart because he needed us to get it together, so we cheered him on and commemorated every awesome day,” says Amanda.

“It was a privilege to watch him through all of that. We didn’t have time to fall apart because he needed us to get it together, so we cheered him on and commemorated every awesome day,” says Amanda.

“He’s one of the lucky ones … we got to walk out of the door with him.”

Today, Micah’s mum says he is almost like any other toddler. He’s stubborn, headstrong, cheeky, and loves climbing onto anything and everything he possibly can.

Micah’s favourite person is his big brother Thomas, who was five when Micah was born, and Amanda says he needed some time to warm up to no longer being an only child.

“They’re so close now, but the first few nights when Micah was a newborn Thomas was beside himself saying ‘take him back!’ – it was so funny. He would say, ‘if God knows what we’re thinking, why would he give me a brother when he knew I didn’t want one’,” Amanda smiles.

Understanding first-hand the ups and downs life can bring, Amanda wants nothing more than for Micah to make the most of his own life in the future.

“Although we want to protect him from everything … we can’t. He will find things difficult, but when he does, we hope he draws strength from what he’s already overcome and has resilience in the face of adversity,” she says.

“He’s already so independent. He’s never allowed us to spoon feed him. No matter how tired or full he is, we have to put everything on the highchair tray, which ends up making quite a mess, but we just go with it.”

Amanda says she’s found her silver lining through Micah, and almost losing him has changed their family’s outlook on life – they find hidden gifts everywhere.

“The fact that he can go through all of that when he was such a little baby is just so incredibly inspiring to us as his parents. We just sit back and count our blessings every day we are with him,” she smiles.

Their whole family still feels eternally thankful to the team at Heart Centre for Children in Westmead who saved not only Micah’s life, but a few thousand infants and babies each year.

“We will be forever grateful to Dr Yishay Orr and the surgical team for what they did for our son and giving us a healthy baby who should have a long life that won’t be cut short,” Amanda says.

HeartKids’ annual flagship event, Sweetheart Day, is held on Valentine’s Day, 14 February, and raises awareness and funds for children with Congenital Heart Defects.

“You’re stronger when you’re part of the HeartKids community. We’ve learnt so much through them and no one is alone,” Amanda says.

“This can be really isolating and scary but it’s easier with the HeartKids community. Anyone out there who is looking for support, there are over 3,000 angels as part of this organisation waiting to hold you up.”

Visit sweetheartday.org.au to find out more or to donate to HeartKids.

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