Hearing the first sounds from your baby is a special moment for new parents.
For Sophia and Corey, it would be nine months before they experienced this moment with baby Ella.
At birth, Ella had issues with her breathing and Sophia recalls she didn’t even cry.
“We were told she would likely grow out of it, so we brought our baby girl home,” she said.
But in a matter of weeks, they were rushed back to hospital with Ella struggling to breathe.
They were immediately transferred to the children’s hospital three hours away, where doctors diagnosed Ella with Laryngomalacia and tracheomalacia - floppy windpipe and paralysis of the vocal cords.
At the time, Ella was too little to have surgery, so had a feeding tube inserted and was kept in hospital for six weeks before being discharged.
When Ella’s breathing continued to decline, she was immediately airlifted back to the hospital.
At just three months old, Ella underwent her first life-saving procedure.
Sophia remembers the overwhelming fear seeing her daughter fighting for her life.
“The surgery bought us time until she was old enough for a full airway construction. I don’t think she’d be here today without that surgery,” she said.
As Ella has grown, she’s faced further surgeries to manage the narrowing of her airways.
There was one surgery at nine months that her mum and dad will remember forever.
“It was 7.00am in the hospital and I tickled Ella and she giggled and cooed for the very first time. There wasn’t a dry eye in the room. We’d been so worried she was always going to be ‘the child without the voice’ so were filled with relief and joy that the entire trajectory of her life had changed.”
Ella is now five and her mum describes her as ‘larger than life.’ She loves arts, crafts, Lego, scrapbooking and cooking. A trip to the café with her mum and dad always brings a smile to Ella’s face.
However, the ongoing pain and isolation of hospital and treatment has taken its toll.
“Since Ella was born, it has been a constant yo-yo between home and hospital. She’s missed out on so many activities like toddler groups, swim classes and simple days out in the park,” Sophia said.
The financial burden has also been enormous, and the family has been separated for long stretches of time. Dad Corey has had to stay at home for his job and Sophia is only able to work casually as a nurse to be there for Ella.
Amid all the pain, Starlight has helped bring Ella and her family vital moments of joy.
Every time she’s in hospital Ella loves going to the Starlight Express Room to play with slime, do arts and crafts and have fun with the Captain Starlights.
“I could take my gorgeous child who might not have laughed for weeks into the Starlight Express Room, and she would giggle and laugh at all the silly games the Captains play. They make her the happiest child alive.”
The Captain Starlights have also helped Ella cope with the fear and anxiety of every procedure. As well as multiple airway surgeries, she’s had cleft repair surgery and cysts removed from her vocal cords. She also needs to follow a special, mostly liquid diet.
Her mum said Ella has been so frightened she’s tried to run away as soon as she sees the surgical ward.
“The scariest time for Ella is waiting for her surgeries but the Captains come and play and distract her from her fears so we can get her into the operating theatre,” Sophia said.
With so much of her life consumed by hospital, Ella has some developmental delays affecting her language and gross and fine motor skills but she has worked hard with physical therapy, OT and speech to catch up. Without a doubt, Ella’s biggest achievement has been learning how to use her voice.
Her mum says her heart fills with joy seeing her daughter grow in confidence and having a ‘safe space’ in the Starlight Express Room has helped Ella laugh and play and feel like a kid again.
“There are very few places that make my child feel safe, but Starlight is one of them. The joy that Starlight brings makes all the anxiety and stress of hospital fade away so Ella can just be herself and have fun in the moment.”
Ella is excited to be starting at mainstream school next year which will be a huge milestone for her. She has even started getting ‘sassy’ with the Captains, her mum jokes.
Medically, Ella’s condition needs ongoing monitoring with new complications arising all the time.
“Without Starlight, hospital would be horrendous. The benefit of Starlight for Ella is feeling safe and giving her a sense of control in an environment where that is lacking. Hospital is scary but she knows when she walks through those Starlight Express Room doors, that nothing bad can happen. She’s safe and all the medical stuff is left behind, and she can just be a child.”
