Sydney toddler waits for heart transplant 3 years after brother’s death

Alexander Kakias was born with the same heart condition that killed his brother. The 20-month-old is in a critical condition on a mechanical heart waiting for a heart donor to save his life.

A Sydney toddler is clinging to life, waiting desperately for a heart transplant, because of the same condition that killed his brother three years ago.

Alexander Kakias, 20 months, was flown to Melbourne from The Children’s Hospital Westmead after his heart deteriorated four weeks ago. He has been placed on an artificial heart in a race against time.

Alexander Kakias is clinging to life waiting desperately for a heart transplant.

Alexander is currently kept alive using a Berlin Heart machine.

Alexander was born with Barth Syndrome, a rare condition characterised by an enlarged and weakened heart called dilated cardiomyopathy.

“It is really touch and go at the moment,” dad Nicholas Kakias said.

“Alexander was at Westmead and he deteriorated really quickly and he is now on a Berlin Heart which is an artificial heart that sits outside the body and pumps like a heart, he’s been on it for five weeks,” Mr Kakias said.

Three years ago the Kogarah family faced the same race against the clock with their son Elias, who was also born with the same condition, and was also flown to Melbourne and placed on an artificial heart.

“He was on the heart transplant list and on the Berlin Heart for five weeks when there was a clot in the Berlin Heart and it damaged both sides of his brain.”

Elias tragically died at eight months.

Elias Kakias, three years ago.

Elias Kakias died at eight months old.

When Mr Kakias and his wife Elizabeth fell pregnant again, doctors told the couple there was only a 1 per cent change of the baby being born with the same condition — but unfortunately Alexander was born with the same condition.

Mrs Kakias said she had considered IVF but they were assured the risk was so low, they went ahead to conceive Alexander naturally.

“Geneticists told us it would never happen again and then we were told at 21 weeks into the pregnancy he had the same condition,” she said.

“What do you do, he has a heartbeat, he is moving and even if I terminated, I would have had to bury him,” she said.

Alexander surprised everyone when he was born and was relatively well until Christmas time, when his heart function went down to just four per cent.

Elizabeth Kakias with baby Alexander and son Romeo at Elias's grave.

Elizabeth with Alexander and Romeo.

Alex spent Christmas in hospital and bounded back, but four weeks ago his heart function went down to just nine per cent and would not respond to medication.

He was flown to The Royal Children‘s Hospital in Melbourne and placed on the artificial heart.

“He is a priority but it all depends on a donor and a match,” Mr Kakias said.

“He’s still a very happy boy no matter what they do to him, he has a smile on his face,” Mrs Kakias, 37, said from the hospital where she has maintained a bedside vigil.

The memories of sitting through the same circumstance with Elias just three years ago are still very fresh.

“I’m a bit of a mess, it is a very emotional journey and it has been very hard on our family and we just want to bring him home.

“We are praying this is successful and we get our transplant. We know it could be a while, but as long as I get to take my little boy home this time,” Mrs Kakias said through tears.

Alexander Kakias before his heart deteriorated.

Elizabeth Kakias holding Alexander, before he got sick, husband Nicholas and older son Romeo.

Children awaiting heart transplantation have an overall mortality rate of 10 to 20 per cent and the family is fully aware that a miracle heart transplant comes at the cost of tragedy for another family — a tragedy they know first hand.

“It does, which is sadder, but we would be so grateful, it would be the biggest privilege,” she said.

The Children’s Hospital Westmead has been pushing to offer heart transplants here in Sydney to save families the cost and trauma of having to relocate to Melbourne.

The RCH is the only paediatric facility offering heart transplants in Australia, performing about 15 heart transplants a year, but the upheaval to families in crisis is considerable.

Former head of the CHW Heart Centre Professor David Winlaw quit last year and moved to the USA because the hospital had not had the support to perform heart transplants at the Sydney-based hospital.

In the meantime, families such as Kakias’s generally need to leave their employment and relocate to Melbourne while they pray for their son’s survival.

“They are just not funded for heart transplant at Westmead. I’ve had to give up work and relocate our whole lives,” Mr Kakias, a road builder, said.

“We are just praying we get to bring our little boy home,” Mrs Kakias said.

The family is relying on donations and the support of the Greek community to stay afloat.

Support the campaign at https://au.gofundme.com/f/alexanders-heart-transplant