Without organ donation Bogan Gate family, the Thomas’, wouldn’t have their daughter and sister who is full of life, Chloe.
This Donate Life Week the Thomas’ are calling for people to get educated and say yes to organ donation.
Chloe was just two weeks old when her parents noticed something wasn't right.
"She was jaundiced, but we were told it was probably just breastfeeding jaundice," her mum Kell Thomas recalled.
But at three weeks, further testing revealed something much more serious.
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Chloe had a rise in her bilirubin levels which eventually led to a diagnosis of biliary atresia, a rare and life-threatening liver disease in infants.
The family’s world turned upside down as Chloe was admitted for surgery at Westmead Children’s Hospital.
"She had what’s called a Kasai procedure, where they remove the damaged bile ducts and gallbladder and attempt to redirect bile flow. But it didn’t work. We were home for just three days before she was back in hospital."
By eight weeks old, Chloe was in end-stage liver failure and over the next several months Chloe’s condition worsened.
She required feeding tubes, up to 18 medications a day and constant care.
"She couldn’t go to daycare. Our lives revolved around her medication schedule and she was constantly itchy and uncomfortable so we had to hold her 24/7 because she just couldn’t settle."
When Chloe was eight months old, she was officially placed on the transplant waiting list and there she remained for another eight months until 'the' call finally came.
"It was 11.30 at night. My phone lit up with a no-caller ID and I just stared at it, thinking what else could it be because you don't want to give your hopes up," Kell said.
Despite having a rare good day where Chloe was able to sit and play, the family made their way to Westmead for surgery.
What followed was a life-saving transplant operation that stretched into the early hours of the next morning.
Before the surgery due to jaundice Kell remembers Chloe became more yellow and yellow as the days went on, even her eyes became yellow.
"There was no white left in her eyes and her skin was sometimes fluorescent almost. Her liver was completely shut down nearly."
After the procedure, Chloe was kept in an induced coma to allow her tiny body time to heal.
"When she finally opened her eyes, they were white, that was probably the most amazing moment that we had in her life," Kell said.
Now 10 years old, Chloe is thriving.
"She’s fun, full of life and loves singing, that’s her happy place. She recently competed in the Forbes Eisteddfod and came home with multiple awards. She still gets tired, but she lives life with so much joy."
For her family, Chloe’s transplant means everything.
"Without it, she wouldn’t be here. We wouldn’t have had the last eight, almost nine years with her. Biliary atresia is terminal without a transplant and no child survives it untreated."
The Thomas' are passionate about raising awareness during Donate Life Week.
"People don’t realise organ donation isn’t something you just tick on your driver’s license anymore. You need to register online at the DonateLife website or through Medicare.
"Most importantly, you must tell your family. Even if you’re registered, your loved ones can override your wishes if they don’t know them."
She also reminds people how one decision can impact many lives.
"A single organ donor can save up to seven lives. Your liver can be split to help two people, your kidneys can go to two others, and even corneas can restore someone’s sight.
"My aunt had a cornea transplant and she can see today because someone said yes."
For Chloe’s family, that one donor’s "yes" nine years ago has given them a future they were never sure they’d have.
"They said goodbye to their child and still made the decision to help someone else’s live. It’s something we think about every day. It’s the greatest gift we could have ever received," Kell added.
Donate Life Week is held from 27 July to 3 August. To register as an organ donor or for more information about Donate Life Week visit donatelife.gov.au
