Telethon 2025: Isabelle Rigby, first child in WA to receive heart and double lung transplant, shares story

Every morning, Tracey Newman listens for the sound of her 19-year-old daughter’s footsteps — and every morning, her heart fills with overwhelming gratitude when she hears them.

It’s a sound she once feared she would never hear.

It’s the sound of life.

Her daughter, Isabelle Rigby, was born at just 24 weeks and five days, weighing a meagre 695 grams. She was born fragile with lungs so underdeveloped they could barely support her first breath.

“There wasn’t a day that wasn’t a fight,” Tracey said.

For 175 days, Tracey and her husband Simon sat beside an incubator in Princess Margaret Hospital’s Neonatal Intensive Care Unit — a ward supported by Telethon — watching, waiting, and hoping.

Not a single day passed without that haunting, unbearable question tearing through Tracey’s mind: What if Isabelle doesn’t make it?

But Isabelle was a fighter. She survived a tracheostomy at just 1.2 kilograms — the smallest baby her surgeon had ever operated on — and underwent complex airway reconstruction.

“Isabelle couldn’t talk or make any noise because the tracheostomy was below her vocal cord,” Tracey said.

“Eventually we learnt some basic sign language to communicate with her until she had her airway reconstruction where they took part of her rib cage and made her a new airway.

“After the reconstruction, she slightly began to talk . . . I kept a bottle of Mumm champagne in the fridge for two years until she could say the word mum and she did.

“I went and got that bottle of champagne and popped it.”

Today, Isabelle gifts her mum a bottle of Mumm champagne every Mother’s Day — a sentimental tradition that Tracey hopes doesn’t end anytime soon.

But just when the family thought the worst was behind them, life threw one more devastating blow.

Because of Isabelle’s extreme prematurity and long-term dependence on oxygen, she developed pulmonary hypertension — a condition that narrows the blood vessels in the lungs and places pressure on the heart.

She needed medication to survive every day, and the family was told a transplant might be in her future.

“At 14 her medications just stopped working,” Tracey said.

“We always knew that a transplant was going to be there as an option but we didn’t know that it was going to happen so quickly.

“We basically took her to hospital on a Saturday night just to have her checked out. I was expecting them to say everything was fine and I was expecting to go home.

“Then she was admitted to intensive care at Princess Margaret Hospital, the next day she was transferred to Fiona Stanley Hospital where her health declined again and we were told that she needed to be put on the donor list urgently.

“Isabelle was critical and the only way to save her life now was with a heart and double lung transplant.

“And we needed it to happen quickly, very quickly.”

A donor is never ever forgotten. We certainly celebrate them at birthdays and on Christmas. We acknowledge them whenever we can because I know they’re not just a donor, they’re a hero.

Tracey and Simon remember the fear of that time — trying to stay strong for her daughter while silently preparing for the worst.

“We could have lost Isabelle at any moment, she didn’t have long, she was on the brink (of death),” Tracey said.

“For all of us it was the lowest point, how does a parent deal with being told that your child could die at any moment?

“You have to try and walk away and cry and then come back with a happy face to not let her know the fear you have — to somehow cover that up.”

Isabelle said while she appreciated the effort, she knew exactly what was going on.

“I knew what was happening. I just tried to take my mind off it,” she said.

“I was a big reader so I would read a lot and I would talk to mum, dad and the nurses.”

Then, in a moment nothing short of a miracle, a donor was found — just three days after Isabelle joined the list.

“It was like the angels were looking over us,” Tracey said.

While the family rejoiced, they never forgot the cost.

“For me, it was joy, but on the other hand there was a family grieving,” Tracey said.

“It was a happy moment, but there was another family that just lost somebody and if it wasn’t for that family donating on that day, Isabelle wouldn’t be here.

“As teenagers get older you never know what’s going to come out of the bedroom every morning, but every time Isabelle walks out of her bedroom, every single morning I smile and I’m thankful and grateful to that person that allowed me to see her every day,

“A donor is never ever forgotten. We certainly celebrate them at birthdays and on Christmas. We acknowledge them whenever we can because I know they’re not just a donor, they’re a hero.

“They gave her back to me, to her family and gave her a life and a future.”

The surgery lasted ten agonising hours.

Isabelle is the youngest person in WA to undergo a heart and double lung transplant — a surgery usually performed over east, but she was too unwell to travel.

Her recovery and ongoing care have been overseen by the Lung Transplant Clinic at Fiona Stanley Hospital, a Telethon beneficiary.

Since her transplant, Isabelle has returned every six weeks for monitoring and considers the transplant team family. She’s also found community through Transplant WA’s annual kids camps, another Telethon-funded program.

Thanks to her donor, Isabelle has done more than survive — she’s soared. In 2023, she represented Australia at the World Transplant Games, winning bronze in the 100-metre sprint.

“I can pretty much do everything I wasn’t able to do, like sport, I can finally live a normal life,” Isabelle said.

Now, Isabelle dreams of travelling the world — something once out of reach.

“I want to travel around the world. I want to fly everywhere, that’s the big plan,” she said.

“I would really love to go to Italy, Egypt, I would love to go to Greece, I would love to go to the Nordic countries as well and see the northern lights.”

As Telethon 2025 approaches, Tracey reflects on the support that made this life possible.

“What West Australians give to help sick kids is incredible and without Telethon you know we wouldn’t have the equipment, programs and research to help all the sick kids in WA,” she said.

“It’s greatly appreciated.”