Paediatric Heart Transplant service announced

Children in need of heart transplants will soon be able to receive this life-saving surgery in New South Wales, with the establishment of a dedicated Paediatric Heart Transplant service at The Children’s Hospital at Westmead (CHW).

Premier Chris Minns joined NSW Health Minister Ryan Park at CHW today to announce a $1.8 million contribution from the NSW Government to start the specialist service.

The new service will be operational from mid-2023 and will be rolled out in a phased approach, starting initially with children 12 years and older, helping to reduce the need for NSW families to travel interstate for heart transplants.

“NSW has long been recognised for the world-class care provided to paediatric cardiac patients and their families," Minister Park said.

“This service builds on that model of care and is the next step in the evolution of paediatric advanced heart failure therapy across Australia.”

The benefit of a NSW-based service was demonstrated during the COVID-19 pandemic, when five children received heart transplants at CHW with the support of St Vincent’s Hospital, Darlinghurst and the Royal Children’s Hospital in Melbourne (RCH), including 17-year-old Ahmad.

Ahmad was admitted to CHW in 2021 for a routine vocal cord surgery when doctors discovered he had a rare type of muscular dystrophy that sent his heart into life-threatening distress. He needed a heart transplant to survive, but time wasn't in his favour and regardless of border closures, he was too sick to survive a transfer to Melbourne.

"I remember being told there was nothing more they could do," Ahmad's mum, Souha recalls.

"Less than 24 hours after receiving that news, the doctors discovered Ahmad had another rare condition - an allergy to one of the medications he was being given. It was at that moment that everything changed."

"All of a sudden, we went from planning a funeral to a glimmer of hope and it was enough to not only get Ahmad placed on the heart transplant list but placed at the top of the list."

At that moment in time, Ahmad was considered the sickest child in Australia and remarkably, just 12 hours after being placed on the transplant list he was being wheeled in for his life-saving surgery. Ahmad faced a lengthy recovery, and several complications, but true to his spirit, Ahmad fought hard and came out the other side stronger than ever.

Minister Park said Ahmad's experience demonstrates just what makes this service so important.

“Performing paediatric heart transplants in NSW became a neccessity in 2021 when COVID-19 travel restrictions posed significant challenges for families who needed to relocate interstate."

“We were fortunate to have the skills and expertise available here to provide this lifesaving care and now we have the infrastructure to support it long-term and provide this service to NSW families who need it," Minister Park said.

The new service will operate in close partnership with St Vincent’s Hospital, Darlinghurst, where heart transplants are performed for adults in NSW.

Babies and children aged under 12 in need of heart transplants will continue to be referred to the RCH as the new service is established and grows over time in NSW, with the NSW Government continuing to contribute funding to the National Funded Centre at RCH.

"It’s a great initiative for Australia to have two specialist world-class services capable of providing life-saving paediatric heart transplant surgery," Mr Minns said.

Dr Ian Nicholson, Head of Cardiothoracic Surgery at Sydney Children’s Hospitals Network, said the establishment of the service is a major milestone for NSW.

“The ability to provide a comprehensive paediatric heart transplant service has been a dream for many of our team and we have been committed to doing everything we can to make that happen,” Dr Nicholson said.

“To see this now come to fruition is exciting not just for us as clinicians, but for the children and families who rely on our care.”

For families like Ahmad's, the service will not only help to reduce some of the social, geographical, financial and psychological stresses, but also enable care closer to home.

"Someone in Ahmad’s condition would never have survived a transfer elsewhere," Souha said.

"His story is one of true survival however survival would not have been possible had Ahmad not been able to have the Heart Transplant surgery here at this hospital."

"Every single specialty involved in Ahmad’s care, and there were a lot of them, helped save his life and for that, we will forever be grateful."