2 November 2022

Jayden Neal has a remarkable story

Born with congenital heart disease and DiGeorge syndrome, his tiny body endured two open heart surgeries before his first birthday.

At six, young Jayden was so unwell, he was referred to the palliative care program at Perth Children’s Hospital. 

Renee Deleuil with Jayden Neal.

“He just wasn’t getting enough oxygen and was unconscious a lot of the time,” mum Jemma explained.

“I remember thinking, we can’t keep doing this – we have to make life better for him.”

As part of his palliative care, Jayden underwent one of many surgeries and started rehabilitation therapy. Day by day, his body grew stronger and his independence grew.

Jayden went from bedridden to being able to sit up at the table to eat dinner with his family. He was able to attend school again and could stand up in the bathroom to clean his own teeth. 

“I remember he was really into Michael Jackson at the time and he’d go into hospital and could stand up and dance with the nurses,” Jemma said.

“All of these things were so new for him and he was so happy.”

About five years ago, clinical nurse consultant Renee Deleuil, a finalist in the 2022 WA Nursing and Midwifery Excellence Awards, became Jayden’s palliative care nurse.

“Renee has a great sense of humour and Jayden has a huge personality and likes to be the boss. It’s a great sparring relationship,” Jemma said.

Earlier this year, Jayden’s health worsened and the 13-year old underwent surgery to have stents placed in his heart. 

He has had to learn how to walk and talk again but the surgery has changed his life.

Jayden’s family credits palliative care and nurse Renee with making it all happen.

“She has been a great constant for Jayden over the years – she knows his hobbies, what he likes to talk about and he feels comfortable with her,” Jemma said.

“From my perspective, it can be really lonely caring for a child with complex medical needs. Renee listens and takes time to understand where I’m coming from. Sometimes that’s all you need.”

There are opportunities throughout WA Health to join a team, like Renee’s, a team where you can belong and provide people with necessary and life-changing care.

Find out more at ww2.health.wa.gov.au/Careers