Rustin’s life began with uncertainty, born at 25 weeks and weighing just 814 grams. Despite his premature birth, he showed promising progress in his early days. However, a new challenge emerged when he developed post-haemorrhagic hydrocephalus, a condition involving bleeding in the brain that leads to additional fluid buildup and pressure.
At two weeks old, Rustin was transferred from The Royal Women’s Hospital to The Royal Children’s Hospital (RCH), where his parents Nicole and Matt met Dr Juliet Clayton, a neurosurgical consultant. She placed a Rickhams reservoir in Rustin’s brain to manually drain his cerebrospinal fluid, providing a crucial intervention for his condition.
“He was barely a kilo for his first surgery. After that surgery, Rustin didn’t actually come to for 24 hours. He was non-responsive in the Butterfly Ward for 24 hours – and we weren’t really sure what had happened.”
Amidst challenges, the RCH staff showed remarkable care.
“I get emotional thinking about it. I’m standing at the isolette, I’m crying, the nurses are crying. They pulled Rustin out of the crib that night and let me have a cuddle – I guess they thought, ‘Give mum one of her last cuddles.'”
“I woke up about five o’clock the next day and slowly started to see these little twitches and his eyes fluttering. I said to the nurse at the time – I remember clearly her name was Alice – “please take his eye mask off”, and so she did and from that point on he slowly started to open his eyes,” Nicole recalled.
Despite the challenges, Rustin’s strength grew, joining his family at home miraculously four days before his due date. While he still receives care from the RCH, Rustin now is your typical six year old boy – he loves riding his bike, scooting, looking for bugs, and the beach.
“He says he’s going to be a scientist or hydrologist. I take pride in how far he’s come.”
“One of my hospital memories that stands out is when we were leaving one time. I said, ‘Say goodbye to all the nurses,’ and he opened the door and said, ‘Goodbye, thanks for having me!’ I thought, ‘It’s not a hotel, mate!'” Nicole added.
As a future scientist or hydrologist, Rustin’s favourite part of coming to the hospital is the aquarium.
“He’s quite happy to go to the hospital for his day to day outpatient appointments – as long as we can see the fish and the UooUoos.”
The hospital not only provided critical medical care for the family but also became a community that embraced them during their most vulnerable moments. To this day, Rustin continues to thrive under the watchful eye of Juliet Clayton and the amazing team behind her at RCH.
“I don’t think we can put into words the importance of the hospital – it saved our baby’s life. The staff at the RCH are incredible. I remember when Rustin was nine months old, we were sitting at a café in the hospital, and this nurse walks past and does a double take. It turns out that nurse was Alice. She mentioned that the shoes she was wearing the morning Rustin was in the hospital were so squeaky that she never wore them again because the noise really affected her. The time she saw us in the café was the first time she decided to put those exact shoes back on for work.”