Dale"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.

Dale as a baby

"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.

Dale in hospital

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."

Dale and siblings

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.

Open Quote Image
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'.
Close Quote Image
Dale's mum, Alex

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.

Dale with Captain Starlight

Open Quote Image
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.
Close Quote Image
Dale's mum, Alex
Stories like these are only made possible thanks to our generous supporters. If you'd like to help make a difference for a child, you can donate below.
> Make a Donation

Share This

More Starlight Stories

Discover the many ways Starlight and our supporters help light up a sick child’s life

Starlight Kid
12-year-old Alyssar and her family have had to deal with hospital and treatment since she was diagnosed with Sickle Cell disease at just two years old.
Like Starlight, Swysh is all about the power of positivity and we share a common belief that "every kid deserves a chance to shine."
Starlight Kid
Having Starlight in hospital gave Rohan the opportunity to make the social connections he craved.
A partnership based on our shared values of positivity and integrity.
Starlight Kid
With so much time in isolation, the Captain Starlights became Chase's best friends in hospital.

Keep in touch with Starlight

By signing up, I agree to receive news & fundraising information emails from Starlight. Information collected is in accordance with our Privacy Policy