COVID's extraordinary silver lining
During the peak of the pandemic, when lockdowns and border closures dominated the country, five Sydney teens each received an incredible gift of life - a new heart.
For the first time, the critically unwell teenagers received their heart transplant in NSW, with doctors at The Children’s Hospital at Westmead performing the lifesaving surgery.
Prior to the COVID-19 pandemic, children requiring heart transplants were transferred to the Royal Children’s Hospital (RCH) in Melbourne, the designated Nationally Funded Centre (NFC) for paediatric heart transplantation. However, COVID travel restrictions presented significant challenges for families needing to relocate interstate and uncertainty about when they could return home.
Fifteen-year-old Scarlett was the first patient faced with this life-or-death situation.
Scarlett was diagnosed with hypertrophic cardiomyopathy, a condition affecting the way the blood is pumped around the body, when she was 10.
Normally, the condition can be managed with medication or an implanted device but after a sudden decline in her health three years later, Scarlett’s parents, Amanda and Philip, were told their daughter’s only chance of survival was a heart transplant.
“Scarlett had started having fainting episodes in September 2020 and had to have a defibrillator put into her heart. Then in December, she was running up some stairs and the defibrillator went off in her chest and she was rushed to hospital,” Scarlett’s mum, Amanda, said.
“In hospital the defibrillator went off again, but this time she went into cardiac arrest. She was rushed to ICU, with a doctor pumping her chest on the way, and was put on ECMO.”
ECMO (Extra Corporeal Membrane Oxygenation) is a complex and highly specialised machine that takes over the role of the heart and lungs, pumping blood out of the body, giving it oxygen, then gently circulating it back.
“It was very traumatic for her, it’s like being hit by a car and so scary for us. When that alarm goes off and everyone starts rushing in, it’s just horrible.”
A couple of hours after being weaned off ECMO, Scarlett went into cardiac arrest for a third time and needed to be urgently put back on the machine.
“The doctors said we have two options: we try and give her a heart transplant, or you let her go,” Amanda said.
With just a 14-day window, Scarlett was placed on the transplant list and the family’s anxious wait began.
Fortunately, eight days later Scarlett’s family received the call that would change their lives - a heart had become available.
Under the care of a specialist team led by paediatric cardiac surgeon, Dr Yishay Orr, and with support from St Vincent’s Hospital in Sydney and RCH, Scarlett underwent the historic procedure.
Dr Orr said while the surgery has been performed for many years in Melbourne, it was a ground-breaking moment for the Sydney team, made only possible by the pandemic.
“At the time, we were purely focussed on caring for Scarlett but looking back now, it is quite extraordinary. Many of the team had never been involved in a transplant before so it was a really, big moment when the transplant was successful,” Dr Orr said.
“We knew the team had the skillset, and we knew we had patients, like Scarlett, in desperate need. COVID gave us the opportunity to demonstrate it was possible.”
“It was an extraordinary silver lining to the pandemic.”
Following Scarlett’s surgery, the team performed four more paediatric heart transplants, including for 15-year-old Ahmad.
Ahmad was admitted to hospital for a scheduled vocal cord surgery when he went into cardiac arrest on the operating table. Two weeks later, he was diagnosed with a muscular dystrophy affecting his vocal cords and causing his heart distress.
The news that followed was news no family should have to hear. Ahmad needed a heart transplant to save his life but, he was too unwell to survive the operation and couldn’t be placed on the list.
“My son’s organs began to shut down and we were told to prepare our family and say our goodbyes” Souha, Ahmad’s mum, said.
“But the team of doctors, nurses and clinicians who stood by Ahmad’s side didn’t give up. They continued to run tests which gave us a glimmer of hope, and then, one day, his organs started to recover."
Dr Orr recalls the small window where the team thought Ahmad was well enough to undergo the operation.
“Ahmad didn’t have a lot of time so we worked with our colleagues at St Vincent’s Hospital, who put an urgent call out that jumped Ahmad to the top of the list,” Dr Orr said.
“This decision saved his life. Within an hour, a heart became available and meant we were able to perform his transplant in the timeframe he needed.”
“It was truly extraordinary, and to have teams working around Australia to make it happen was just incredible.”
Ahmad did suffer some complications post-surgery from his condition, the most severe of which was needing to have his right leg amputated, but slowly he recovered and incredibly, walked out of the Paediatric Intensive Care Unit (PICU) with his new prosthetic, taking the harrowing journey all in his stride.
"The team at the hospital and his organ donor saved Ahmad's life. He's been given a second chance and we are grabbing that with both hands," Souha said.
All five transplant patients are now doing well and achieving simple milestones that would not have been possible without the specialist multidisciplinary team, including the surgeons, anesthetists, cardiologists, intensive care specialists, clinical nurse consultants and so many more, and the selfless decision of the organ donors and their families.
A review of paediatric heart transplantation is now being undertaken, as part of the regular review of NFCs, with the hope of introducing a NSW paediatric heart transplant service in the future.
“The dream is to be able to continue to offer heart transplants to children in NSW and we are really motivated to do everything we can to make it happen,” Dr Orr said.