More Australians die while waiting for an organ donor

In 2016, the Burrows family were living in San Diego while dad Anthony served with the Australian navy. In the middle of his three-year stint, Anthony and wife Clare welcomed a baby girl, Kate.

In her first weeks of life, Kate’s skin started to turn yellow. The family suspected jaundice, but a blood test revealed she had a condition called biliary atresia – her body could not process bile.

Clare and Anthony Burrows with their daughter Kate, 9, who received a life-saving liver transplant as a toddler.Credit: Wolter Peeters

Kate was fortunate to be matched with an altruistic donor, who would provide a portion of their liver for her tiny body. But after a number of weeks, it became apparent the nine-month-old wasn’t responding well to the piece of liver she’d received. She remained in hospital with ongoing complications, as the family’s time in the US came to an end.

“They always tell you there’s a percentage of transplants that fail, but you never think you will be in that percentage,” Clare said. “We got Kate to a point where she was stable enough to be on a plane, and then we left.”

The Burrows arrived back in Sydney on a Friday. The following Monday, they received a call from the Children’s Hospital at Westmead: a local donor had been found for Kate.

On March 1, 2017, the then 15-month-old received her new transplant.

Organ donations dropping

The organisation which manages organ donation in Australia, DonateLife, is concerned about a decline in donor numbers, with those registering to donate falling by 13 per cent in NSW and 15 per cent in Victoria in 2023. In some parts of south-west Sydney, fewer than one in five adults are registered organ donors, while in Melbourne’s Brimbank and Greater Dandenong councils, the rate is one in 10.

More than 50 Australians died while on the organ transplant waitlist last year. Twenty-two died while on the liver transplant waitlist alone, compared to five in 2022. There are about 1800 Australians on the waitlist.

NSW state medical director at DonateLife Dr Michael O’Leary said organ donation sign-ups had remained pretty static for years until last year’s fall, with an actual bump in 2021 when more people downloaded the Medicare app to receive their COVID-19 vaccination certificate.

“It was actually just quite lucky that to get onto the Medicare app and get your certificate, the button was really close to the one for signing up to be an organ donor,” he said.

O’Leary said multiple factors affect how many make it off the waitlist in any given year. “We are nowhere near being able to provide organs as required for transplantation in Australia,” he said. “Anyone on the waitlist is on there because the specialists in organ failure felt these patients were warranted for transplantation.”

Kate proud of her scars

Now aged nine, Kate is a happy and healthy year 4 student, who recently gave a speech about organ donation to her classmates.

“She’s quite proud of her scars. She takes medication day and night for anti-rejection, but if you met her you wouldn’t know,” said her mother Clare. “She’s met every single milestone since she had the transplant.”

In the months after their daughter’s life-saving gift, the Burrows reached out to her donor’s family, but didn’t hear back.

In September last year, they did. Kate’s donor was a young woman who loved to dance, and wanted to be a paramedic when she grew up. The Burrows wrote back, telling them that Kate, too, loved dancing, as well as playing soccer and taking part in Nippers.

“Kate wrote that letter, and she was so grateful to be able to share what she has done in the years since,” said Clare. “We encourage her to see her donation as a very special gift.”

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