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

Tracey Newman listens to her 19-year-old daughter’s footsteps every morning, and when she hears them every morning, her heart fills with great gratitude.

It was a voice he once feared he would never hear.

This is the sound of life.

Her daughter, Isabelle Rigby, was born at just 24 weeks and 5 days old, weighing a very light 695 grams. His lungs were so underdeveloped that he could barely take his first breath.

“There wasn’t a day that didn’t go by without a fight,” Tracey said.

For 175 days, Tracey and her husband Simon sat next to an incubator in the Neonatal Intensive Care Unit at Princess Margaret Hospital, a ward supported by Telethon, watching, waiting and hoping.

Not a day went by without that unforgettable, excruciating question tearing at Tracey’s mind: What if Isabelle doesn’t make it?

But Isabelle was a warrior. She survived a mere 4-pound tracheostomy (the smallest baby her surgeon had ever operated on) and underwent complex airway reconstruction.

“Because the tracheostomy was below the vocal cord, Isabelle was unable to speak or make any sounds,” Tracey said.

“We eventually learned some basic sign language to communicate with him until his airway was reconstructed, until we could take part of his ribcage and build him a new airway.

“After the reconstruction, he began to speak lightly… I kept a bottle of Mumm champagne in the refrigerator for two years until my mother said the word and she said it.

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

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

But just when the family thought the worst was over, life dealt yet another devastating blow.

Due to Isabelle’s extremely premature birth and long-term dependence on oxygen, she developed pulmonary hypertension, a condition that narrows the blood vessels in the lungs and puts pressure on the heart.

He needed medication every day to survive, and the family was told he might have a transplant in the future.

“When he was 14, his medication wasn’t working anymore,” Tracey said.

“We always knew there would be a transplant as an option, but we didn’t know it would happen so quickly.

“We actually took him to the hospital on Saturday night to get checked out. I was waiting for them to tell me everything was okay and I was waiting to go home.

“He was then taken into intensive care at Princess Margaret Hospital, then transferred the next day to Fiona Stanley Hospital where his health deteriorated again and we were told he needed to be put on the donor list urgently.

“Isabelle’s condition was critical and the only way to save her life was a heart and double lung transplant.

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

A donor is never forgotten. We make sure to celebrate them on birthdays and Christmas. We remember them whenever possible because I know they were not only donors but also heroes.

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

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

“For all of us, this was the worst point – how can a parent tolerate being told that their child could die at any moment?

“In order not to show your fear to him, in order to somehow cover it up, you should try walking away, crying, and then coming back with a happy face.”

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

“I knew what was going on. I just tried to take my mind off it,” he said.

“I was reading a lot, so I would read a lot and talk to my mom and dad and the nurses.”

Then suddenly a donor was found, which was nothing short of a miracle – just three days after Isabelle joined the list.

“It was like angels were looking down on us,” Tracey said.

While the family was happy, they never forgot the price.

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

“It was a happy moment but another family had just lost someone and if that family hadn’t donated that day Isabelle wouldn’t be here.

“As teenagers grow up you never know what will come out of the bedroom every morning, but every time Isabelle comes out of the bedroom, every morning I smile and feel grateful and grateful to that person who lets me see her every day.

“A donor is never forgotten. We make sure to celebrate them on their birthdays and at Christmas. We remember them whenever we can because I know they are not just a donor, they are a hero.”

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

The surgery took ten agonizing hours.

Isabelle became the youngest person to undergo a heart and double lung transplant in Western Australia; This surgery was usually performed in the east, but he was too ill to travel.

His recovery and ongoing care is being overseen by the Lung Transplant Clinic at Telethon beneficiary Fiona Stanley Hospital.

Since her transplant, Isabelle has returned for observation every six weeks, and the transplant team is thinking of her family. He also found community through Transplant WA’s annual children’s camps, another Telethon-funded program.

Thanks to her donor, Isabelle did more than just survive; rose rapidly. In 2023, she represented Australia at the World Transplant Games, winning a bronze medal in the 100-meter sprint.

“I can do all the things I couldn’t do, like sports, I can finally live a normal life,” Isabelle said.

Now Isabelle dreams of traveling the world; This is something that was once unattainable.

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

“I’d really like to go to Italy, Egypt, I’d love to go to Greece, I’d also love to go to the Nordic countries and see the northern lights.”

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

“It’s incredible what West Australians give to help sick children and you know without Telethon we wouldn’t have the equipment, programs and research to help all sick children in WA,” he said.

“It is much appreciated.”