Sydney toddler gets heart transplant for rare condition which claimed his brother’s life

At just 18 months of age, Alexander Kakias’ heart had given up and he relied on an external machine to keep him alive. His parents feared for the worst after already losing a son to the same condition — but then a miracle happened.

Alexander Kakias took his first steps in a hospital ward while wearing a white medical robe, holding on to a little wooden trolley — and ­utterly oblivious to this miracle.

For any parent this is a milestone moment. But it was beyond pride for his parents who, just a few weeks earlier, were trying to prepare themselves for the worst.

After three months on an external heart pump, their little boy had fevers, infections in his blood and was going into septic shock — a life-threatening event for anyone, let alone someone with heart failure.

Alexander Kakias was diagnosed with a rare condition called Barth Syndrome.

The Berlin Heart, an external pump, was keeping Alexander alive.

And if it was possible to make this nightmare even worse, they had watched Alex’s older brother go through the same thing — and not make it.

Alex had spent three months on the transplant list, alive only due to the Berlin Heart, a contraption that sits outside the body to pump blood when the heart can no longer do it.

Both boys suffered from Barth Syndrome, a rare condition characterised by an enlarged and weakened heart called dilated cardiomyopathy.

Elias died, aged eight months, when a clot formed in his Berlin Heart after five weeks on the heart transplant list.

And now Elizabeth and Nickolas Kakias were being forced to watch Alex wait for a transplant, with the ever-present spectre of infections or clots forming in the Berlin Heart.

“I always prepared myself for the worst, I never got excited about anything,” Mrs Kakias said.

“I could never imagine bringing him home. I thought it would be the same road as Elias where I didn’t get to bring him home.”

Elias Kakias died at eight months after being diagnosed with Barth Syndrome. Picture: Supplied

Elizabeth Kakias with baby Alexander and son Romeo at Elias' grave. Picture: Supplied

After Alex pulled through the sepsis, Mrs Kakias found a large growth in his son’s throat.

“I thought that was game over, I thought it was cancer, but it was a fungal infection in the back of his throat,” she said.

The Peakhurst family had to uproot from Sydney in June to go to the Royal Children‘s Hospital in Melbourne, the only place in Australia where heart transplants are conducted.

And then Covid hit Melbourne.

Romeo, the couple’s older son, was exposed to Covid at his temporary school. It meant isolation for the family and Alex could not see his family for three weeks.

“I was locked in the apartment for nearly three weeks and even though Romeo and I were getting tested every day, we could not go to the hospital,” she said.

“Alex has never been away from me. It was the hardest three weeks of my life. We would FaceTime and he would cry and I would cry.”

Alexander Kakias with his mum Elizabeth a few days after transplant.

Alex Kakias, the day after his transplant.

Time and time again Alex got sick or needed more surgery and the months ticked on. The longer a child spends on the transplant waiting list, the lower the odds of recovery.

“At one point everything was going downhill, he was getting infection, after infection, bug after bug and I thought: ‘Am I going to take my son home or am I going to bury my son?’. When he got sick I just begged him not to leave me, because I knew I couldn’t do it again,” Mrs Kakias said.

Then the call came that a donor heart was a match for Alex.

Alexander Kakias had a lifesaving heart transplant. Picture: Sam Ruttyn

Alex with his big brother Romeo.

Alexander Kakias back at home after his transplant. Picture: Sam Ruttyn

“He went in at 10.30am and got out at 8pm. We got the phone call it went really well, he didn’t skip a beat and it went smoothly,” she said.

“Everyone was so happy but I knew what the other mother was going through, so how could I be happy?

“I was happy for my child but very sad for her because she was going to bed without a child and I know exactly how she felt.

“You are happy your child survived but you feel for the other parent.

“When I saw him in ICU, he had his breathing tube in and the sedation had worn off a bit and he was trying to move and waved to me.”

Alexander with his dad Nickolas, mum Elizabeth and brother Romeo at home. Picture: Sam Ruttyn

The turnaround was remarkable.

“The next day when I went in the breathing tube was out and he sat up, he was drowsy but he sat up,” she said.

Alex was out of ICU in five days and, on the ward, wanted to get back to the business of becoming a toddler after being bedridden for almost five months.

After tentative steps with his trusty trolley he took off down the ward, smiling at his accomplishment.

“He had to hold on to something to walk. I was amazed that he had the strength,” she said.

“It was a quick turnaround, he was amazing. Every check they have done has shown the heart is good. It’s only the last two weeks that he has started to walk on his own.”

Alex turned two in lockdown, just like his first birthday.

Now back home in Sydney, his family are forever grateful to the angel child and their parents.

“Alex will grow up and I will remind him how lucky he is. He got the gift of life,” Mrs Kakias said.

The family also want to push for The Children’s Hospital at Westmead to begin heart transplants in NSW, to save families like theirs from having to uproot their lives and move to Melbourne.

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