A family in Botanic Ridge is advocating for organ donation after a liver transplant gave their daughter a second chance at life about eight years ago.
The eight-year-old Layla is one of the happy kids in the community, starting Grade 3 at the end of this month. At just seven weeks old, she was diagnosed with the life-threatening condition, biliary atresia, which was causing her liver to fail.
“It was a lot to process at the time,” mother Aleisha Saxon said.
“Within a week, she was at Royal Children’s Hospital having her first operation. They just had to make drainage from her liver to be able to get rid of the excess bilirubin that was in her system.
“We were told it could be successful but it might not be, and just to wait and see if it was successful. It was quite quick to realise that it wasn’t successful, and it had failed.
“We just continued to notice that she was getting yellower, and sicker, and her belly would swell up with fluid in her tummy. She eventually just wasn’t drinking as well so ended up having a nasal tube put in to help get her food into her.“
Layla went downhill really quickly at the time and was put on the top of the national waitlist for a liver transplant.
“She was always a happy baby despite being so sick,” Aleisha recalled.
“But she deteriorated, and we started to notice that things were escalating, and we were getting to the point where she was quite desperate for a liver transplant.”
The parents were told Layla might not live to see her first birthday unless a liver transplant.
They waited not knowing if that call would come. After a long wait, that call did finally come. The hours about finding out if the organ was a complete match were very “nerve-wracking”. It matched, and the gift of organ donation saved their daughter’s life.
“She ended up being in the theatre for around 14 hours. Very long time. And when she first came out, it was the first time we saw her and we’d already noticed a huge difference in her skin,” Aleisha said.
“Her skin was starting to turn white, and it had been yellow for a very long time. Her eyes as well were already starting to turn white.
“It was remarkable how quickly the liver was working. And then we spent about another month in the hospital, and she was just already a new completely different baby.
“She started to giggle. She started to roll. She started to eat, all the things she just couldn’t do before her transplant.”
After the rollercoaster journey, the family has ever since been advocating for organ donation.
“It’s changed our lives, but most importantly, Layla wouldn’t be here today if it wasn’t for organ donation and her donor and her donor family for saying yes to donating,” Aleisha said.
“We encourage people to sign up because it really does make a huge difference. We’ve been able to have nearly nine years of Layla that we potentially weren’t going to have.
“It was such a bizarre feeling going through the transplant process because you’ve been hanging on for so long for her to have the transplant, and then you’re so nervous about everything that can go wrong about the transplant.
“And then you feel joy as well that she’s able to get it, but at the same time, you know that someone else has had to pass away. It’s a very bittersweet feeling.”
Every year for the anniversary, the family would sit down and talk about how special the donor is, even though they don’t know who they are.
“They’ve changed our lives and thank you is never enough. There are no words to explain how thankful we are,” Aleisha said.
There are currently 1,800 Australians on the waiting list for an organ transplant, with a further 14,000 undergoing dialysis who could benefit from a kidney transplant.
Registering to be an organ and tissue donor only takes one minute. Register at: donatelife.gov.au
