At 20 weeks pregnant, mum Alinta and her husband James faced the distressing news that their baby had a heart defect.
“We knew from that very moment that once born, our baby would need extra special care,” Alinta said.
But nothing prepared them for how soon their baby would arrive.
At just 27 weeks, baby George was born, three months premature.
He was immediately rushed into the Neonatal Critical Care Unit (NCCU). He was so tiny and unwell, Alinta was not able to even hold her newborn son.
Doctors diagnosed George with Tetralogy of Fallot – a combination of life-threatening heart conditions that affect blood flow, oxygen levels and the structure of the heart.
“I wasn’t able to cuddle him until he was one week old. But when I finally held him, it was amazing, I felt like his mum for the first time,” Alinta said.
George spent over 110 days in the NCCU and Alinta said every waking moment was consumed with fear and worry.
George gradually got stronger and Alinta said they were filled with relief every time he passed one of his milestones.
When he was finally well enough to go home, the family knew they faced a long and uncertain road ahead and that George would need major heart surgery. On top of his heart issues, he had also developed a secondary Chronic Neonatal Lung Disease.
At 10-months old George underwent open heart surgery. It was a harrowing eight-hour wait for Alinta and James while their baby underwent the lifesaving surgery.
“James and I just sat together in the hospital garden for all those hours, and I wrote George a letter to give to him when he's older,” Alinta said.
Once was out of surgery, George was placed on life support in ICU for seven days before spending four weeks recovering in hospital. Mum Alinta never left his side.
“The first couple of years of George’s life were so hard on him,” Alinta explains. “He was on oxygen until he was two, he was tube fed, his speech was impacted, and all the time in hospital affected him emotionally too.”
It was also hard for George’s big sister Stella, then aged two to see her baby brother so sick in hospital.
Thankfully during those dark times, Starlight helped bring moments of joy to the family.
Captain Starlight was regularly on the cardiac wards and Alinta said hearing the joy and laughter they spread throughout the hospital helped bring some light to a very sad situation.
Watching Starlight TV from George’s hospital bed was also positive distraction and gave Alinta hope for the future.
The Starlight Express Room helped the family stay connected and it gave Stella a break from the hospital ward where she could play with the Captain Starlights and have fun with glitter and craft.
Alinta said, “As a parent, you want your kids to feel included and Stella who was then just a toddler herself needed that play for her own development and to have an outlet from everything that was going on. The Captains made Stella feel special and they made sure she wasn’t left behind because her brother was sick.”
Now age eight, hospital remains part of George’s life. He needs ongoing medication, monitoring and tests to manage his heart and lung conditions.
The family give George every opportunity to live life to the full, but Alinta says the constant fear and worry lurks in the back of their minds. He has yearly Echocardiogram tests on his heart and may need further surgery as a teenager. She said they’re on edge worrying what every next scan may show.
If George gets a virus or infection, it goes straight to his lungs and he needs urgent medical treatment. He sees a respiratory specialist every three months and also needs oral steroids.
Alinta said when George gets a cough, it lasts for ages and he misses a lot of school and can't physically keep up with his friends.
“He coughs all night, and it affects his sleep. He said to me he wishes he didn’t have a cough because it makes him feel different to other kids and also means he misses out being at school or socialising with his friends.”
The constant demands of medical appointments has also meant Alinta has not been able to fully return to her career as a midwife. The family also welcomed baby number three with younger sister Poppy, now aged five.
Despite all his ongoing medical needs, nothing holds George back. He has a big personality – he’s a whirlwind but also very kind and caring. He’s creative with Lego, loves swimming, playing with cars and can turn a random box into a boat in no time at all! He’s just started jiu jitsu which is building his confidence.
He’s a star student and does school work beyond his years. “He’s really clever and has a memory like an elephant!” Alinta jokes.
While the anxiety of every hospital admission weighs heavily, having Captain Starlight there to deliver fun and laughter helps the family get through the toughest times.
When George needed an IV canula, the Captains came in singing with games and bubbles and helped take the fear and tension away by giving him something fun to focus on instead. And for George, no visit to hospital is complete without going to the Starlight Express Room for some gaming or constructing fun.
Describing the impact Starlight has on their family, Alinta said, “Starlight helps you feel like a ‘normal family’ again."
Alinta goes on to say "When you’re stuck in a hospital room with a sick child, you feel abnormal. Then as soon as you go into the Starlight Express Room it’s a welcoming sanctuary where you can take a break from the hectic demands of the medical world.”
