When parents Melissa and John welcomed baby Claudette into the world, they never imagined the weeks of anguish that lay ahead before bringing her home.
At just two days old, Claudette was transferred into the Special Care Nursery with low oxygen levels.
She remained there for three weeks.
As Claudette’s condition improved, her relieved mum and dad were finally able to bring her home to be with big sister Imogen.
Sadly, in a matter of days, Claudette’s condition deteriorated. Melissa recalls the overwhelming fear as their baby girl was rushed from the local hospital to intensive care at the children’s hospital.
“We thought we may lose her. Her lungs were collapsing and she had dangerously low oxygen levels.”
Claudette spent the next four weeks in hospital as doctors tried to stabilise her breathing and determine why her lungs weren’t working properly.
Once she was stabilised, Claudette had her first general anaesthetic so that doctors could examine her lungs. She was just five weeks old.
Over the following months, Claudette was ultimately diagnosed with a very rare lung condition called Primary Ciliary Dyskinesia (PCD).
This rare genetic condition is found in approximately 1 in 15,000 people and affects the tiny hair-like structures called cilia in the lungs, ears and nose. PCD causes breathing difficulties and chronic, recurrent lung, ear and nasal infections.
“Those first two months of her life while she was in hospital without a diagnosis were incredibly difficult. We just had to try to stay positive as best we could,” Melissa said.
It was during these painful early weeks in hospital that the family discovered Starlight.
“Though Claudette was so tiny, I still remember the Captain Starlights singing to her when she was just five weeks old in ICU,” Melissa recalls.
Even when she was back at home with her family, Claudette’s unrelenting treatment continued. She had a nasogastric tube and was connected to an oxygen machine 24 hours a day for another two months until she was finally able to breathe on her own.
Since then, daily medical treatment is part of Claudette and her family’s life.
“Managing PCD effectively requires consistent daily routines, habits and medication which can take hours each day,” Melissa explains.
Claudette needs nebulising medications, twice daily chest physiotherapy and has spent most of her life on antibiotics fighting off infections. She also has quarterly 'tune ups' as her mum calls them, which involve a fortnightly course of strong IV antibiotics. Claudette also wears a hearing aid for mild hearing loss.
Her mum says that while the demands of her treatment schedule take its toll, Claudette is a happy, cheeky toddler who loves ballet and jumping on the trampoline with her sister.
“It’s understandable that Claudette will at times resist and refuse her daily treatments. But she doesn’t let all the physio, treatments and awful-tasting antibiotics stop her. She’s strong, determined, loving and has an amazing imagination.”
Frequent specialist appointments and check-ups have become her normal.
“She’s not even four yet, and has already undergone 12 procedures,” Melissa said. “We couldn't be prouder of her. She’s scared at times but does her best to take it all in her stride.”
Amid the challenges the family face, Captain Starlight and the Starlight Express Room have brought moments of joy and happiness making hospital feel less scary and overwhelming.
Her mum said they’ve had lots of fun visits from Captain Starlight helping Claudette get through the hard days or having to do hard things like take her medications.
Claudette loves craft, painting and imaginary play and the Starlight Express Room is where she can keep doing all those things she loves. Her favourite things about the Starlight Express Room are the face painting and ballon animals with Captain Starlight!
“We love the Starlight Express Room. It’s amazing at keeping Claudette entertained and positive. She especially loved the Christmas concert and meeting Santa. It also gives me a break, and I can get some work done too,” mum said.
Last year was a particularly challenging one because doctors discovered that Claudette’s right middle lobe was permanently collapsed and beyond repair.
“Unfortunately, Claudette has already developed permanent lung scarring, which has been very difficult to come to terms with,” mum said.
Claudette’s condition also affects her growth, and Melissa says her daughter is smaller than other children her age. “Because she uses more energy than a healthy child would just to breathe, it’s hard for her to gain weight. But her medical team are doing everything they can to support her growth and development.”
With the ongoing challenges of managing PCD, the family does all they can to create routines and has strong support networks around them. Knowing that Starlight will be there every time Claudette is in hospital helps ease the stress and sadness.
“For a child to be able to laugh and play is so important. As Claudette gets older, she becomes more aware, and more scared. The Starlight Express Room is so fun and a distraction from all the pain and fear.” Claudette's mum said.
