Born in San Diego while the family was far from home on an overseas posting, Kate was diagnosed with Biliary Atresia. This is a condition where the bile ducts to the liver are narrowed, blocked or completely missing.
Clare, Kate’s mum, knew that life as a Defence family would have its challenges. She first met Navy partner Anthony 19 years ago when he was at the Australian Defence Force Academy and she was working and studying in Melbourne.
As a couple they experience a posting to Western Australia, deployment to the Gulf, and posting to Sydney. Then their twin boys, Sam and Jack, were born in 2011.
“Once we had children, things were certainly more challenging with deployments,” recalled Clare.
“Anthony deployed with HMAS Anzac for seven months when the boys were six months old. He missed a lot of key milestones.”
But it was the birth of Kate in 2015 when things really changed.
“We noticed at about eight weeks that the whites of her eyes were yellow and her stools were an unusual colour. We took her to the doctor and we were sent straight to emergency,” said Clare.
Kate had surgery to bypass the blocked ducts in order to prevent liver damage. It was hoped that she would grow bigger and be able to have a liver transplant when she was older.
“The diagnosis was almost a relief because we’d been up in the air for months trying to work out why our baby girl was just not well,” said Clare.
“She was placed on the list for a liver transplant in January 2016 but, basically, you’re waiting for your child to deteriorate to a point where they can’t go on without out a transplant.”
Kate was a match with an altruistic (living) donor and underwent the transplant in April 2016. Ongoing complications meant that she was hospitalised in Los Angeles for most of that year. When she was finally stable, the family relocated back to Australia.
Within ten days, Kate was so unwell that the only option was a second transplant. This time she was on the donor list for four days.
“We got the call at 1am on the Tuesday and we were just thinking about this other family. They were obviously going through the most traumatic time in their lives, and just hoping that they would have some comfort in the gift they were giving.”
Kate’s second transplant was successful. Along with follow-up appointments and life in general, Clare has become involved in raising awareness around organ donation, particularly among Defence members.
“When Anthony went to register as an organ donor he had difficulty as, being in the Defence Force, he doesn’t have a Medicare number,” explained Clare.
“So that started us thinking—how could we raise awareness around the importance of organ donation and how could we get a significant number of people in Defence to register, or at least start the conversations with their families?”
Clare and Anthony held an event at Garden Island along with Kate’s transplant team. They highlighted the impact registered donors have on families such as theirs and that it only takes five minutes to register.
“It was such a significant thing to have all of these amazing people out of their hospital environment to join us and help raise awareness for organ donation,” said Kate.
“But, most importantly, we also collected 75 forms from Defence members registering to become organ donors!”
This article was published in the 2019 Autumn/Winter issue of Defence Family Matters.
Jack and Sam, (now seven), Kate (almost four) and their parents have experienced deployments and postings, but the biggest challenge of all has been supporting Kate through two life-saving liver transplants in less than twelve months.