"There have been many times when we've not been sure he'd make it through the night."
That's the agonising fear parents Alex and Matthew live with.
Their son Dale was born with Tracheo-oesophageal fistula (TOF), Oesophageal atresia (OA) and Vacterl association. VACTERL is an acronym made up of the first letters of the main clinical problems. Dale has V for Vetebral malformations, C for Cardiac Malformations, TE for TOF/OA, R for Renal Malformations and he also has Autism.
Just hours after he was born, Dale had lifesaving surgery to join his stomach and oesophagus together and separate his trachea from his oesophogus. It was heartbreaking for Alex and Matthew to see their baby boy lying in a hospital bed hooked up to tubes, respirators and machines.
It would be three months before they could bring Dale home from Hospital for the first time.
"We were in complete shock. It took months and months of coming to terms with what our new normal would be," mum Alex says.
Hospital and treatment remain constants in the family's life.
Alex had to leave her job to care for Dale full time and dad Matthew changed jobs which enabled more flexibility. The family also moved house to be nearer to the Women's and Children's Hospital in Adelaide.
Dale, now six, has ongoing tests and appointments with a team that includes a Paediatrician, Paediactric Surgeon, Neurosurgeon, Nephrologist, ENT, Cardiologist, Urologist and Respiratory Specialists. He also has a support team that includes a Dietician, Occupational Therapist, Physiotherapist, Speech Pathologist, Podiatrist and Psychologist. He needs oxygen and or CPAP when unwell for his chronic lung disease and relies on a feeding tube for some of his food and fluid intake daily.
Alex said the constant medical intervention from such a young age takes its toll.
"Dale is a 'medical' child. To still find his own personality through it all, has been hard. So many experiences revolve around the hospital. Dale is often embarrassed about some of the things going on in his life - feeding, breathing, physical limitations - it's been really complex."
She says that despite everything he endures, Dale still holds his own with his older siblings Jared, 13 and Amalie age 9. "He's a bright kid, engaged with the world around him. Whenever people meet him, they always say that he is so upbeat they would never know how much he deals with."
While hospital takes up so much of Dale's life, Starlight has been there helping him still be a kid. Dale loves going to the Starlight Express Room to have fun with Captain Starlight.
"It's so comforting to have a safe space that Dale recognises. The Captains have such a positive impact on him and are really quick at adapting their interactions to support his needs. They really see who he is, not 'what's wrong with him'." - Alex, Dale's mum
She said hospital would not be same without Captain Starlight and jokes that once Dale is in the Starlight Express Room he never wants to leave.
"Kids need Starlight's positive distraction and a break from everything medical. To not have the chance to play and have normal childhood experiences, would be sad, especially for kids with complex medical issues."
