As mum Beck tucked her happy seven-month-old baby Hailey into her cot on the night of 28th May, she had no inkling that everything was about to change.
Within hours, Hailey woke up screaming.
Beck vividly recalls how frightening it was for her and dad Shane seeing their baby girl in so much distress. “Hailey kept wanting her bottle but was vomiting everywhere. Nothing would control her thirst; she soaked through every nappy. She was crying in her sleep, had laboured breathing then was hard to wake up.”
Feeling frantic, Beck rushed her to the local hospital emergency.
Initially, it was assumed that Hailey had gastro or a virus, but then a doctor recommended a glucose check.
Tests showed Hailey’s blood sugar levels were extremely high and unable to be read on a normal monitor. She was in diabetic ketoacidosis - a potentially life-threatening complication of Type 1 Diabetes.
A diagnosis in a baby as young as Hailey is rare with most children not diagnosed until after the age of three.
“We were so scared. It happened so fast that we didn’t have time to process it. If we’d waited any longer to get her to hospital, we would have lost our baby,” mum said.
Hailey was immediately transferred to the intensive care unit at the children’s hospital to try and stabilise her blood sugars. She remained in hospital for a fortnight and was started on an insulin pump and continuous glucose monitor.
Beck said it was a heartbreaking time as at just seven months old, their little baby could not possibly understand why she couldn’t have more milk or why she was so thirsty. Hailey wouldn’t drink water and would become more and more distressed.
“We spent those weeks in hospital learning everything we needed to know to keep our baby alive. From inserting her devices, to carb counting and how to monitor her levels,” Beck recalls.
Hailey is now five and since her diagnosis, she has learned to crawl, walk and play all with her continuous glucose monitor (a small wearable device that measures glucose levels) and insulin pump attached to her body. She also has Hypothyroidism and anaemia.
“We stay as positive as we can, but it hasn’t been easy. We’ve had sensors accidently pulled out on swings, tubing caught on door handles and alarms sounding 24/7. Hailey’s journey with diabetes has had its tough moments and many sleepless nights,” her mum said.
Hailey’s diagnosis has had a huge impact on family life. Hailey’s blood sugar levels are monitored 24/7 and she needs the correct dosage of medication (insulin) every time she eats – which can be up to 20 times a day.
Family routines, meals and mealtimes all had to be adapted to better manage Hailey’s glucose levels. Beck had to stop work to juggle hospital appointments and to be “on call” in case of an emergency. They cannot leave the house without Hailey’s backpack full of her life-saving diabetes equipment and supplies. Hailey has frightening incidents of both hypoglycaemia and hyperglycaemia.
Despite all she has to deal with, Hailey is full of energy, brave and caring. She even calls her insulin pump ‘Hops’ after her love for bunny rabbits and will happily show off her devices and makes them look pretty with stickers! Her amazing big brother Brendan, age ten, looks out for her and is always there to help in any way he can.
Beck said, “The hardest part for Hailey has been controlling her emotions when her blood sugars are not under control as well as the fear of the needles and blood tests in hospital.”
When Hailey is in hospital, doctors have to sedate her to cannulate her as she is so upset and moves around too much. Even when she is sedated it can take four or five people to help keep her still, her mum explains.
Hailey asks her mum why she has to have to have needles when no one else does and can feel frustrated and angry when there are things she can’t control.
Amid the constant fear and worry, Starlight has helped Hailey and her family cope with hospital and treatment.
“Starlight has impacted our family in so many positive ways. We know we can go to the Starlight Express Room whenever Hailey needs a break from treatment and it makes her feel special, included and happy,” dad Shane said.
When Hailey sees Captain Starlight in the hospital wards she always runs up to say hello and see what they are doing. Beck laughs that with the Captain Starlights there, the wait times seem like seconds instead of hours!
Starlight has helped replace the scary, painful parts of Hailey’s hospital experiences with fun and exciting memories and experiences. The Starlight Express Room also gives Hailey the opportunity to see other kids who may be like her and help her to know she’s not alone.
“These positive experiences help with healing and recovery. When a child has a smile on their face it makes them forget the pain and struggles and this ultimately improves their outcomes. Overall if a child is happy and strong it helps them build resilience.”
And to Starlight supporters, Beck and Shane said, “Thank you for making Hailey’s time in hospital more enjoyable and allowing her to escape her treatments even if it’s just for a few moments. These experiences make our daughter feel more normal and included as in the real world this often doesn’t happen.”
