Amanda Hack was one of two mothers of young Sydney cardiac patients who had campaigned for a transplant service in NSW, sharing her story with The Sun-Herald in March. Her daughter, Scarlett, now 16, was one of the five transplant recipients at the hospital in 2021 after she suffered two sudden cardiac arrests as a result of hypertrophic cardiomyopathy (thickening of the heart muscle).
Hack said it was clear that young patients receive the best results when they receive care closer to home.
“It means families are kept together. My husband was able to work, so we had an income. We wouldn’t have had that if we had to relocate to Melbourne for three months,” she said.
“When you’re going through something as traumatic as that, getting to know a whole new medical system and staff adds this extra level of pressure and difficulty. With Scarlett, her clinical nurse consultant now is the same we had for the transplant.”
Between one and three NSW children have died each year over the past five years because they were too sick to be transferred, or their families could not move interstate.
When it was decided Scarlett would need a transplant, Hack was told her chance of survival on a flight to Melbourne was “very slim”.
Hack welcomed the decision to conduct more transplants in Sydney but hoped the service could soon be expanded.
The Children’s Hospital at Westmead has been the subject of criticism in recent months, with concerns raised about its ability to retain highly skilled staff.
The paediatric surgeon who spearheaded its heart transplants in 2021, Dr Yishay Orr, has since left Sydney for a role in the United States.
Her departure meant the Sydney Children’s Hospital Network had only three cardiac surgeons, two at Westmead on call every second day to cover emergency cardiac cases and support the statewide paediatric ECMO (heart lung bypass) service, and another at Randwick, which provides limited cardiac services.
Dr Joanne Ging, the network’s director of clinical operations, said the theatres in question opened last week.
Ging said the transplants would be conducted by Dr Ian Nicholson, head of cardiothoracic surgery at the network, who was involved in the 2021 transplants, and Dr Matthew Liava’a. She said the hospital was recruiting a third paediatric cardiac surgeon at present, prioritising transplant experience.
“It’s a big team. It’s not just the surgeons, it’s intensive care, the anaesthetists … we have been building the team with transplants in mind,” she said.
Nicholson said that providing a comprehensive paediatric transplant service in Sydney had been “a dream for many of our team”.
“To see this now coming to fruition is exciting, not just for us as clinicians, but for the children and families who rely on our care.”
Ging said the establishment of the service should serve as a reminder for people to have a conversation with their families about organ donation.
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