Little Oliver was born prematurely and was so small he could be held in your hands. It would be four months before he was strong enough to go home.
Oliver’s parents were aware of his heart condition, including having Trisomy 21 or otherwise known as Down Syndrome during Bianca’s pregnancy, but nothing prepared them for the journey that lay ahead.
Leading up to the birth, Oliver was diagnosed with congenital heart disease and he was not growing well. Bianca was told that there was a high chance Oliver might not survive, and at just 10 days old, Oliver went into heart failure and would need lifesaving surgery to repair a large hole in his heart.
It was heartbreaking for Bianca and dad Joshua to see their tiny baby fighting for his life while other babies left the hospital in perfect health.
“I felt like my body had failed my son, and it was my fault that he suffered with this heart condition. It took me time to come to terms with it all. I tried to be positive where I could and enjoy the life that we were living one day at a time,” mum Bianca said.
During those agonising months following his birth, Oliver endured endless tests, blood transfusions, breathing support and needed medication to manage the fluid on his lungs until he was strong enough to undergo open heart surgery at 11 weeks old.
Bianca and Joshua were finally able to bring Oliver home, but hospital has remained a constant in the family’s life.
As Oliver grew older he was diagnosed with a list of conditions, including hypothyroidism, oral aversion, gastroperisis, Oesophageal dysmotility, Gastro-oesophageal reflux, Cricopharyngeal bar, ADHD, Left sided conductive hearing loss, Congenital esotropia, nasolacrimal duct obstruction, Nephrocalcinosis , obstructive sleep apnoea, and required a gastrostomy, a long-term feeding tube.
Bianca is no longer able to work a normal Monday to Friday job due to the demands of Oliver’s treatments. “Our whole life revolves around the care that Oliver requires and ensuring that things run smoothly,“ Bianca said. “Oliver has regular unplanned visits due to the difficulties he has with his PEG feeding tube."
Oliver, now age seven is cheeky, funny and outgoing and he thrives off making people laugh. He’s close to his siblings and loves dancing, music and playing outdoors.
Bianca said one of the hardest parts for Oliver has been the trauma and anxiety caused by so much time in hospital.
“If we attend the hospital, Oliver immediately feels a fight-or-flight response and often shuts down and won’t interact or talk to people.”
Thankfully, the family discovered Captain Starlight and the Starlight Express Room to brighten their time in hospital.
“I cannot begin to explain the impact that Starlight has had on our family. It has been the only positive that Oliver experiences in hospital.”
Bianca describes the Starlight Express Room as a safe space for Oliver. “He knows the doctors and nurses won’t bother him there so he can be free to enjoy his time singing, dancing and playing.”
As parents, the Starlight Express Room also gives Bianca a place to take a mental break from the constant stress and demands of being in hospital rooms.
Oliver goes to the Starlight Express Room every time he’s in hospital and his siblings love to hang out there too and enjoy time together having fun as a family.
Bianca said in her experience, laughter heals like nothing else and said Oliver’s mental health would be significantly worse without Captain Starlight there to lift his spirits.
“I can’t imagine a hospital admission without Starlight. Being able to laugh and be happy is vital to children’s emotional wellbeing. It gives them something positive to look forward to in an environment where things can sometimes feel grim.”
The family is so thankful to supporters without whom Starlight would not exist.
“Thank you for giving my son the opportunity to thrive. For gifting him the priceless gift of laughter and smiles and for providing him with a space to feel safe and be himself. There is nothing more humbling than seeing the kindness in the world and Starlight it the definition of that.”
