Sydney Hospital to build new ward for children with rare and chronic diseases

Maddy Ryan, who is unable to walk or swallow, will benefit from her hospital’s new Kookaburra ward designed for young patients just like her.

Sydney mother Sally Ryan with children Maddison, 8, William, 6, Matilda, 10, and one-year-old Isabella. Picture: Jane Dempster

It was the tight grip little Maddison wrapped around her finger that told Sally her daughter was willing to fight.

Twenty weeks into her pregnancy, Sally Ryan had been told her unborn child had arthrogryposis, a rare disease that would cause all her legs and arms to be contracted. Four weeks later, doctors asked her whether she wanted to terminate.

Having previously lost twins to an infection that sent her into premature labour, Sally and husband Ged decided there was “no way” they would opt to end Maddy’s life.

“When (Maddy) was in ICU, she would hold on to my fingers so tight … It’s such a hard feeling to describe, she had this firm grip as to say ‘Don’t let go, I’ve got this’.”

In just the first year of her life, Maddy had spent 257 days in hospital for surgeries to her hip, knees and feet. At eight, she is unable to walk, stand, sit, eat or swallow, and requires constant care with a special help from a “tummy button” to be fed, a breathing machine at night and another machine to help her manage her saliva.

“She was actually born with her knees raised up by her head. We joked and we called her a taco because when she was born, she was literally folded in half so she had to have multiple surgeries to bring those legs down into a normal position,” Ms Ryan said. “There’s never a dull moment in the day with Maddy, there is always something to do at some point.”

The mother of five says her daughter’s condition has taught her to not “sweat the small stuff”.

“She’s dreaming like a typical eight-year-old and I want her to aim high but … also just be happy as well and certainly have a quality of life over quantity … she isn’t gonna live forever, but none of us is, and especially over the next few years, just let her really enjoy being a child.”

Maddy will be among the young patients to benefit from Sydney Children’s Hospital Network’s new paediatric ward, dedicated to children with chronic and complex needs.

The new ward, which requires $15m to fit between 20 to 24 beds, will be made possible with the hospital’s fundraiser smashing rec­ords with its $19.2m total tally.

Sydney Children’s Hospital Network clinical operations executive director Joanne Ging said the ward, named the Kookaburra Centre, will be designed to “physically best” care for its patients. The design will include bigger rooms and bathrooms, ceiling points to hoist children off beds and spaces for families to stay.

“A lot of these children come into the hospital repeatedly. So it’s really important we try and keep the family together and provide that support. So that’s the physical sort of layout of what we’re trying to achieve,” she said.

Dr Ging said funding could extend to having “navigators” and junior nursing staff members on hand to support families. “We’ve got some navigators who work outside when children go home, but not through their journey inside our hospitals,” she said.