Organ donors on the rise, but fewer Australians receiving life-saving transplants

When five-year-old Queensland twins Louis and Theo started school this year, they had an unusual boast: They were allowed to drink as much water as they liked.

It’s something most kids take for granted, but throughout their young lives, the Gold Coast boys had strictly limited their intake of water because they were born with kidney disease.

“It’s so difficult to stick to that — you’re watching things like when you’re doing your teeth, have I taken an extra sip?” the boys’ mother Kath said.

At just five weeks old, Theo and Louis were diagnosed with a rare kidney disease called congenital nephrotic syndrome, which affects one in 20,000 children worldwide.

“Pretty much from there, our life has been very busy with hospital appointments, medications, lots of restrictions and I guess our ‘normal’ being very different to other families and other children of their age,” Kath said.

The boys’ father Jay said within a few years, their condition became very serious.

“It took three years before Theo reached end-stage renal failure, and then Louis was probably a little bit further behind that,” he said.

The family had to be home by 5pm every night to prepare the boys for 12 hours of dialysis.

They did all this while waiting and hoping for two life-saving kidneys to become available.

Then, last year, the family got a phone call that they hoped would change everything.

Transplant teams found a kidney for Theo.

And just three weeks later, a match was found for Louis.

The boys began to prepare for surgery.

More organ donors, fewer transplants

The latest report from Australia’s Organ and Tissue Authority (OTA) shows 2024 saw a slight increase in the number of deceased organ donors but a decrease in the number of transplanted organs.

The OTA’s CEO Lucinda Barry said technological advances meant an older person who once was unsuitable to be a donor could now give their organs.

“Globally, we’ve seen an expansion of age for donors, which is great. In fact, Australia’s oldest donor has been 87, which is absolutely fantastic,” Ms Barry said.

But because they were older, they might not have as many suitable organs to give as a young person would.

“There was a decrease in the number of heart and lung transplants this year. Generally, older donors are not able to donate a heart or lung,” she said.

Families saying no to organ donation

Last year’s figures have highlighted the need for a bigger pool of registered donors in Australia.

Every year, very few people who are suitable organ donors die. Those people need to either die in emergency or ICU for it to even be considered. Last year, that number was 1,630.

But first, consent needs to be sought from their families, and many Australians are saying no if they’re unclear what their loved one would have wanted.

“It’s a really emotional time for families, as you can imagine. So making a decision like that is never easy,” said Lucinda Barry, the CEO of Organ and Tissue Authority.

The authority found families were much more likely to agree if they were aware their family member intended to donate.

“Families generally want to honour the wish of their dying or deceased relative, and if they don’t know what their relative wanted, then only four out of 10 families consent to donation,” OTA national medical director Helen Opdam said.

“If someone’s registered, then the consent rate is much higher, at 80 per cent or higher.”

In 2024, 53 per cent of the families consented. Before the COVID-19 pandemic, the consent rate was 60 per cent.

“If we’d had that consent rate last year, it would have meant an extra 175 life-saving organ transplants In 2024,” Dr Opdam said.

Australia has one of the lowest donation rates in the developed world and, since 2018, between 30 and 60 people have died every year waiting for a transplant.

Nationally, about 36 per cent of people are registered to donate their organs.

For people under 25, the number is only 8 per cent.

In South Australia, where you can register when you get your drivers licence, the rate of youth registration is five times the national average.

Ms Barry said the OTA was working with other states and territories to get registrations added to the licence process.

She believed young people supported organ donation, but didn’t realise they were suitable.

“We do know that some people think, ‘If I drink alcohol or I have a smoke or I’m too unfit that I can’t become a donor,'” she said.

But usually, it’s the way someone has died rather than how they have lived that makes them suitable.

For people who need a kidney transplant, live donors are an option — the report showed the number of kidney donors remained steady on last year.

Life after donation

For Theo and Louis’s family, life after donation has been getting easier.

Theo was given medical clearance to go to school the day before the term started and Louis joined him a few weeks later.

Their father delights in letting them stay up until 7:30pm on the weekends, weaving around the neighbourhood on their bikes at a time they once would’ve been in bed, hooked up to machines.

“We are still coming to terms with not having to do dialysis. Even as a parent, Kath and I might want to go out and have a bit of time with friends [but] you would always feel guilty about leaving the other to set up dialysis.

“We’re getting great sleep as well because there’s no alarms at night. It’s phenomenal.”

But their two-bedroom apartment hasn’t been completely cleared of the dialysis gear, and the couple’s optimism is cautious. They’ve had their hearts broken before.

While Theo’s observations are good so far, his journey has been particularly long, and this isn’t his first kidney transplant.

After a year on dialysis, the family got a call that there was a kidney, only to discover it wasn’t viable as Theo was ready to go into surgery.

A month later, Theo did get a transplant, but it made him “incredibly sick” and it had to be taken out after six months.

A second chance at life

This time, the signs are better and the family is grateful.

“It’s amazing that people do donate and give people like Louis and Theo another chance at life. I don’t know how long you can live on dialysis, but it’s definitely not much of a life … and you have to give up on a lot of dreams that people take for granted,” Jay said.

“It gives them a second chance at life and becoming who they want to be.