Children’s Hospital at Westmead now conducting children’s heart transplants

The cardiac team at The Children’s Hospital at Westmead has begun performing heart transplants, meaning young patients no longer need to travel to Melbourne — or die because they can’t.

Meet Scarlett Hack, the girl with a heart condition who’s only alive today because Covid border closures forced doctors at The Children’s Hospital at Westmead to attempt an incredible operation that had until then only been offered in Victoria.

Melbourne’s Royal Children’s Hospital was the only place in Australia where children can get a heart transplant.

Tragically that meant two to three NSW families a year lost a child because they could not make the trip to Victoria.

But The Sunday Telegraph can reveal five heart transplants have quietly and successfully been performed at The Children’s Hospital at Westmead in the past year – and it’s all because of a remarkable “silver lining” from Covid.

The first was Scarlett Hack. The now 15-year-old was diagnosed with hypertrophic cardiomyopathy at the age of 10 and at 13 her health deteriorated. She had a cardiac arrest in hospital early last year and was placed on life support and ECMO (a heart-lung bypass machine).

Her parents Amanda and Philip were told their daughter’s only chance of survival was a heart transplant.

Scarlett Hack, 15, was the first heart transplant patient at The Children’ Hospital at Westmead. Picture: Sam Ruttyn

But flying a child to Victoria on an ECMO machine is “extremely, extremely risky, because hit one pothole and you can ruin everything,” Mrs Hack said.

“Then we were told we could not go, Melbourne would not let us in because of Covid. We were told Scarlett had 14 days to find a heart (or) we would have to switch off her life support,” she said.

Amid their despair, paediatric cardiac surgeon Dr Yishay Orr stepped up.

“Dr Orr, the most amazing woman I have ever met, said we can try to do the transplant here, do you trust us to do it – and we said let’s do it here,” Mrs Hack said.

Amanda and Phil thought they would lose their daughter before her heart transplant. Picture: Sam Ruttyn

After a harrowing eight-day wait, Scarlett received a donor heart.

“We have this amazing team that could do all of this and Covid gave us the avenue to demonstrate it was possible so it was an extraordinary silver lining,” Dr Orr said.

Scarlett Hack with transplant surgeon Dr Yishay Orr two months after her transplant. Picture: Sam Ruttyn

Scarlett Hack was connected to ECMO, a heart-lung bypass machine that bought time in the operation.

“It felt historic and groundbreaking and extraordinarily rewarding to lead that team to a successful transplant.

“All of the five kids (we have transplanted) would have normally been sent to Melbourne but because of the border closures and the challenges of working out if we could get a retrieval team into Victoria or whether they could leave again due to isolation rules, it became necessary to offer transplant in NSW … Covid was deeply intertwined with what we achieved.”

Scarlett, now 15, with her parents Phil and Amanda and dog Scout. Picture: Sam Ruttyn

Scarlett took four months to recover but is now getting ready to go back to school in Year 10 next year.

“The support we got from CHW was amazing, we cannot begin to shout their praises, they gave me back my daughter, I will never be able to repay them for what they did,” Mrs Hack said.

Ahmad El Haj Youssef, a 16-year-old from Greenacre, was next to be saved.

Last year Ahmad went into hospital for vocal cord surgery because he was losing his voice. It was supposed to be a straightforward operation but he went into cardiac arrest.

Ahmad El Has Youssef with some of the team that saved his life – (from left) CNC Anna Berent, CNC Charlene Casey, Ahmad with his mum Souha Maskaleh, Dr Claire Irving and pharmacist Brad Rockliff. Picture: Sam Ruttyn

“Literally he died for two minutes before they brought him back,” his shocked mother Souha Maskaleh said.

“Then they found out he had a bad heart, cardiomyopathy, that he was born with. Ahmad was on life support and his organs were shutting down … we got to the point where they said there is nothing more we can do, ring your family to say goodbye. It was the darkest of dark days.”

Ahmad was on ECMO, but it only bought time.

“We had been told he would only survive about 21 days on that and he was on day 18, so the clock was ticking,” she said.

Ahmad with his mum Souha Maskaleh at CHW, where he had the heart transplant. Picture: Sam Ruttyn

Even before Covid, Ahmad was too sick to travel to Melbourne. Dr Orr said Ahmad became a national priority.

“St Vincent’s offered us one of their urgent call-outs, where the patient jumps to the top of the list nationally … within one hour we got an offer,” Dr Orr said.

His life was saved but Ahmad lost a leg due to a clotting issue and he was in an induced coma for five months.

“About 35 days later they started to wake him up, he was very weak, his muscles had been melting away, and he couldn’t even lift a finger,” Mrs Maskaleh said.

Ahmad would not have survived the trip to Melbourne.

Alexander Kakias nearly died waiting for a transplant.

“It’s an absolutely miracle his mind was intact, after the cardiac arrest, but then he had to work very hard with the rehab team. We spent five months in hospital … but my little boy is back on his feet and back at school.”

Ahmad returned to the hospital for a check-up on Thursday. “I have a lot of gratitude to the donor and I am in debt to Westmead and everything they have done for me, I love that hospital, it is my second home,” he said.

Alexander Kakias, 2, at home after recovering from a heart transplant. Picture: Sam Ruttyn

The long push for paediatric transplants to be performed in NSW has been at the centre of friction between NSW‘s two paediatric hospitals over the past five years, with CHW doctors arguing funding should be directed to their Heart Centre to save children the trip to Victoria.

“Our dream is to continue to offer it and I know there are obstacles but we want to make it part of routine health care in NSW,” Dr Orr said.

Elizabeth and Nicholas Kakias from Peakhurst have twice had to uproot and go to Melbourne for a heart transplants for their sons.
Four years ago her son Elias, born with a rare condition, was flown down to Melbourne and placed on an artificial heart while he waited for a transplant. Tragically, he died.

Alexander Kakias is now three and healthy.

Last year, the family had to uproot again, this time with son Alexander, 20 months, who had the same condition and also required a heart transplant which he gratefully received after a long wait.

Ms Kakias said she had told Health Minister Brad Hazzard how important it is to have transplant in NSW.

“Putting those children on planes down to Melbourne is risking their lives, I think NSW is more than capable of doing transplants,” she said.

Offering transplants in NSW would save, on average, two children a year. Mrs Hack is prepared to lobby any politician to ensure heart transplants continue at Westmead.

Become a donor at: Donatelife.gov.au