Kiddipedia
Indi from NSW received a lifesaving transplant last year when she was just five months old.
Now sixteen months, Indi was born with biliary atresia, a rare childhood liver disease that blocks the bile ducts, causing damage to the organ.
“About 24 hours after Indi was born, she became jaundiced. We were admitted to the special care ward for light therapy, however when Indi didn’t respond to treatment we were sent to Westmead Children’s Hospital for further testing, where she was quickly diagnosed with biliary artresia,” said her mum, Lee.
At 26 days old Indi underwent Kasai surgery to drain the bile from her liver. Although she recovered well, she would need a liver transplant in the future.
Indi’s condition was stable for a couple of months and her family were thrilled to have her home. But things took a drastic turn when she was four months old. “Things went downhill very fast, she became jaundiced and was having a hard time holding onto nutrition, eventually needing overnight tube feeding and we ended up back in hospital,” says Lee.
Indi’s condition continued to rapidly decline, and a liver transplant was her only hope. “We ended up in hospital for her transplant work up, but unfortunately never left, as Indi was too sick to go home,” says Lee. At the same time, Lee was having her own work up done in case an organ did not become available and she would be a live donor option for her daughter.
“I’ll never forget the incredible moment that we got the call to say they had found a suitable liver and she went into surgery hours later,” says Lee. “After a mammoth 16-hour surgery, we had our girl back.”
Indi is now 11 months post-transplant and has been kicking goals. Originally three months behind in her milestones, she is now running after her big brother like a healthy infant.
“Our lives have changed so much. Looking at her now, you would never know the ordeal she has been through. We think of Indi’s donor and their family every day and are so incredibly grateful for the gift of life she was given,” says Lee.
“Indi is living proof that organ donation saves lives. It’s so important for people to tell their family and friends they want to be a donor, and to encourage them to register to be donors too.”
More Australians are alive today because of organ and tissue donation. To register to be an organ and tissue donor, visit donatelife.gov.au. It only takes a minute.
DISPELLING THE MYTHS AROUND ORGAN DONATION
In 2019, 1,444 Australians received a life-saving transplant due to the generosity of 548 deceased organ donors and their families. Another 12,000 Australian lives were improved by eye and tissue transplants.
But not everybody who registers to be an organ donor can give the gift of life to others when they die. Only around 1,300 Australians – about 2% of those who die in hospital each year – can be considered for organ donation. Donors must die in a hospital intensive care unit (ICU) as their organs need to be working well to be transplanted. Some patients may also not be able to donate due to medical conditions.
The importance of more Australians registering to be organ and tissue donors on the Australian Organ Donor Register (AODR) is the focus of the Organ and Tissue Authority’s annual DonateLife Week campaign from 26 July – 2 August this year.
In Australia, the family of a potential organ or tissue donor is asked to agree before donation proceeds. OTA data shows that 9 out of 10 families agreed to donation in 2019 when their family member had registered they wanted to be a donor on the AODR.
By registering to be a donor, and telling your family you want to donate, you have the chance to save lives.
Organ donation myths busted
Once I register to be an organ donor, I automatically become one when I die.
Not everyone can become an organ donor when they die. Only about 1,300 Australians each year – around 2% of those who die in hospital – die in a way where they can be organ donors, although many more can be eye and tissue donors. This is why it’s so important that more Australians register to be organ and tissue donors.
Doctors won’t try their best to save my life if they know I’m registered as an organ donor.
Australian hospitals follow world’s best practice, and saving your life is the absolute priority of medical staff – health staff, doctors and nurses work incredibly hard to save people’s lives. Organ and tissue donation is only considered when the person has died or death is inevitable.
I don’t want my body left disfigured.
Organ donation is performed as a usual operation in the hospital by highly skilled surgical teams and does not disfigure the body. Families can still have an open casket viewing if that is their wish.
I have a medical condition, so I can’t donate.
Nobody should rule themselves out due to age, medical conditions or lifestyle choices, but let the medical experts determine suitability for organ or tissue donation at the time. You could still make a huge difference to someone’s life.
Testimonial
Nick Brown, a 38-year-old Lieutenant Colonel in the Australian Army who said yes to donating his wife Leanne’s organs when she died last year, says: “I personally couldn’t think of anything more worthy than being an organ donor. When you do register, what’s most important is that you tell your family and friends you want to be an organ donor, and encourage them to register to be donors too.”
