Teddy died before he got a new heart. A simple reform may have helped him

When Teddy Forster’s little heart stopped working, his parents initially thought it would only be a matter of time before he received a new one.

After all, they were receiving world-class care at the Royal Children’s Hospital, and assumed a suitable match would eventually be found.

“We went into this situation a little bit naive,” Teddy’s mother, Sinead, says. “The team were really honest with us about how long our journey could be. But you never think your child will pass away.”

Sinead and Teddy Forster during Teddy’s stay at hospital.

Teddy died at the Royal Children’s Hospital in February last year. His condition deteriorated before he could receive a compatible heart.

Seventeen months later, Sinead and dad Alex – from Busselton, south of Perth – are back in Melbourne. Their second child, Noah, who is six months old this week, is being treated in the same wing of the Royal Children’s Hospital for an identical heart condition.

“It’s really hard coming in here,” Sinead says.

Five-month-old Noah Forster with dad Alex and mum Sinead.Credit: Joe Armao

“Teddy was here for so long. We walk past the room he was in. But in another way, it feels like coming home. We still got 18 more months with him than we would have otherwise. We got to see his personality and see him grow.

“He’s changed our lives and so many of the nurses’ and doctors’ lives. He was such a special, special little boy.”

Teddy Forster died last year at age 20 months after waiting for a heart transplant.

While Noah’s cardiomyopathy is less serious than Teddy’s – Noah is not currently on the waiting list for a heart transplant – he was nonetheless transferred from Perth to Melbourne after a series of back-to-back viruses that could have attacked his already fragile heart.

Noah may also need a heart transplant one day.

Sinead and Alex decided to share their family’s story given Australia’s heart transplant waiting list is at a five-year-high.

The Allan government has still not overhauled how Victorians sign up to the organ donation register, more than a year after a parliamentary inquiry recommended linking registrations to driver’s licence renewals.

“You never think the unthinkable will happen to you,” Sinead says. “You don’t want to plan for the worst day of your life. But families need to have those conversations. They need to be prepared so that if it happens, you don’t need to think about it.”

Australia operates an opt-in system for organ donation, like the United States and Canada, and families are also asked for their consent. Jurisdictions such as Wales, Iceland and the Netherlands have adopted opt-out systems where people have to tell authorities about any religious or cultural objections.

Research has shown as many as four out of five Australians support organ and tissue donation, but only one in three are registered on the Australian Organ Donor Register.

South Australia leads the nation, with 74 per cent of eligible individuals signed up as organ donors, more than twice the national average. The South Australian government says this is because it was the first state in Australia to allow people to become a registered donor through their driver’s licences.

Only 23 per cent of Victorians are on the register, according to the recent inquiry, a figure well below the national average.

Services Australia data shows that registrations are as low as 10 and 15 per cent in pockets of Melbourne’s north and western suburbs. Beechworth, Yackandandah, Chiltern and Rutherglen, all in the state’s north-east, have the highest level of registrations, at 42 per cent of the population.

Dr Rohit D’Costa, the medical director of DonateLife Victoria, said older people shouldn’t assume they wouldn’t be suitable candidates for organ donation.

“People rule themselves out of being a donor, saying ‘nobody would want my organs’, but we’ve had donors well into their 80s. That liver tissue can last for many years after the donation,” D’Costa says.

He says an older donor’s kidneys and lungs could function for a decade or more in a recipient, and one organ donor can save as many as seven lives.

“Adult donors can help little children. It’s possible to do what’s called a split liver, where part of the liver goes to an adult and the smaller lobe goes to a child. One adult can help multiple people with their generosity.”

D’Costa hopes Victoria will soon shift to the model where people are prompted to register to be a donor whenever they renew their driver’s licences.

Opposition health spokeswoman Georgie Crozier says she will back such a proposal, which would retain Victoria’s opt-in system.

“I don’t think enough is being done by government to increase awareness,” Crozier says.

An Allan government spokesperson says Labor will respond to the recent parliamentary inquiry later this year.

“We’ll have more to say soon,” the spokesperson says.

Meanwhile, 105-or-so Australians are waiting for a heart transplant, up from 64 this time last year.

Noah Forster isn’t one of them. For now.

“He’s getting stronger every day,” mum Sinead says, wiping away tears.

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