To mark the 30th anniversary of paediatric liver transplants in Australia, grateful Rachel pens an open letter below to the family who came to little Cordelia’s rescue…
“This is a thank you to the people who we will never know, who saved our daughter’s life.
When Cordelia was born, we thought we had everything under control. We were excited to meet our second child, but not as excited as our eldest daughter was to have a baby sister.
The first couple of months were great, although in hindsight there were clues that there was a problem.
She was a little jaundiced, but we were told that it would “clear up.” Eventually a doctor ordered a blood test and we discovered that Cordelia had a liver disease that would likely require her to have a liver transplant.
She was diagnosed with Biliary Atresia, a disease which causes the bile ducts to become blocked and leads to cirrhosis of the liver.
From 10 weeks of age, Cordelia spent nearly as much time in hospital as out of it. Early surgery failed to try and slow the pace of her disease, so at 8 months old Cordelia was listed for a transplant.
We just had to wait and watch Cordelia get sicker and sicker. Her bones were brittle, her skin was yellow and very itchy, her abdomen was swollen and she had horrifying bouts of gastro-intestinal bleeding.
Cordelia waited on the transplant waiting list for over six months. She came very close to dying and ended up in intensive care on a ventilator. We found it a very isolating experience as there is so little community awareness about childhood liver disease.
Finally, Royal Prince Alfred Hospital in Sydney called to tell us that there was a liver available for Cordelia.
This only happened because another family lost someone they loved dearly, but they were brave and generous enough to donate that person’s organs to save the lives of a group of strangers.
Today, Cordelia is like any other nine-year-old. She’s hilarious, caring and a great runner. We know how lucky we are to have her and that it is because of a decision made by people who will never know her. We can’t thank them enough for saving her life.
To help recognise the impact these amazing surgeons and donors have, we helped establish the charity Liver Kids Australia.
We’ve been working to educate people about paediatric liver diseases and show that there can be positive outcomes for kids like Cordelia.”
- Liver Kids Australia hosts its first conference and family day at the Taronga Centre in Mosman, Sydney, on July 9. Leading liver surgeon and pioneer, Dr Albert Shun, is the keynote speaker.
Approximately one in 10,000 Australian children are born with a liver disease each year – some that will require transplants to improve their quality of life.