health

"We were celebrating more than my daughter's 4th birthday."

We just had my daughter’s fourth birthday.

Like most four-year-olds, this has been celebrated in great style with a very noisy party and too much cake. However, unlike most four-year-olds, the day of her party had a reason for an even greater celebration; it was the third anniversary of her life saving liver transplant.

Alexandra was born in Canberra Hospital. By the time she was only three days old, she had lost 14 per cent of her birth weight and was severely jaundiced. A series of blood tests revealed that her liver function was anything but normal and the neonatal team suspected that she had Biliary Atresia.

Biliary Atresia is an aggressive disease that destroys the bile ducts that drain the liver. It is relatively rare (approximately one in 15,000 live births) and the cause remains unknown. It is responsible for 60 per cent of paediatric liver transplants as, without treatment, the disease will result in cirrhosis and liver failure.

When she was five days old, Alexandra was airlifted to The Children’s Hospital at Westmead in Sydney, where the diagnosis of Biliary Atresia was confirmed. When she was 15 days old, Alexandra had a surgical procedure intended to divert the flow of bile from her liver. Unfortunately, the disease had been so aggressive that the surgical team warned us that it was unlikely to be successful and we might only get a year or so before she would need a liver transplant.

Alexandra at Westmead Children's Hospital. Image supplied.

Over the following 5 months we returned fortnightly to Sydney for check-ups. Shortly before Christmas 2011, Alexandra was hospitalised, her liver function was deteriorating and as a result, she was suffering from malnutrition. Once liver disease has progressed to this stage, the only option for survival is an organ transplant.

At the time Alexandra was added to the transplant waiting list, there were 14 children waiting for a liver transplant through The Children’s Hospital at Westmead and there had been no compatible organ donors for any of those children in the previous four months. On average, there are 6-8 children waiting for a liver transplant at any one time through that hospital.

We waited for seven months, during which time Alexandra’s health went up and down. It is a reality that some children don’t survive the wait as there are simply not enough organ donations in Australia. That reality brings an added level of anxiety into the already stressful life of caring for a sick child.

It was 10.00am on a Monday morning when I received the call that there was a match for Alexandra and we needed to be at the hospital by 3.00pm. It’s almost impossible to describe the mix of emotions that hit you when that call comes through. There is overwhelming relief, tempered with worry about such a tiny person undergoing such major surgery. Behind your own situation, there is also the knowledge that somewhere, a family has said the final goodbye to a loved one and made the brave decision to honour their life by donating their organs.

We packed the car and drove up to Westmead, readying ourselves for a long stay. However, despite appearing to be a match for Alexandra, the donor organ could not be split to be used for a child. This meant that the transplant could not go ahead. It is another reality of organ transplant, while the donor and identified recipient may seem to be compatible, that isn’t always the case and the organ will go to someone else on the list.

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On the Tuesday afternoon we returned despondently to Canberra, prepared to wait again and hoped that it would not be long. It was not long at all, at 4.00am the next day, we were back at Westmead and later that morning, Alexandra was in the operating theatre.

The picture above shows Alexandra on her way into the operating theatre for her transplant. She was two days short of her first birthday, weighed only 5.6kg and really only had a few weeks left…

Alexandra today.

In Australia, we are lucky enough to have some of the world’s best health facilities and surgeons. We have a great record of successful organ transplant but a shortage of donors. Every Australian can have a hand in improving this situation. As individuals we can sign on to the Organ Donor Register and tell our family and friends that we want to be an organ donor. As families, we can make the brave decision to donate our loved ones organs if the worst happens.

Most importantly, we can all learn and talk more about the many positives around organ donation and the role it plays in celebrating and honouring the life of the donor and the new life it gives to the recipient.

Certainly, since our own experience, our extended family and many friends have registered as organ donors with the knowledge that, if the worst happens to us, it means a new beginning for someone else.

Three years after Alexandra’s transplant we consider ourselves very lucky that every day, we have the company of a delightful, cheerful and intrepid little person who finds something to enjoy in almost every situation. As you can see from the recent photo, thanks to the selfless generosity of her donor’s family, Alexandra’s life truly is a celebration, both for our family and the memory of her donor.

DonateLife Week (2 – 9 August) is the national awareness week to promote organ and tissue donation in Australia.

The theme for DonateLife Week 2015 is, ‘Have the chat that saves lives,’ with Australians being urged to register their donation decision on the Australian Organ Donor Register and to share that decision with their loved ones.

More than 1,600 people are on organ transplant waiting lists at any one time. With one organ and tissue donor able to transform the lives of ten or more Australians, a conversation about donation today could one day save the lives of many.

For more information, visit donatelife.gov.au.

Are you an organ donor?

Tips for how to #havethechat that saves lives:

The next time your family sits down for a meal together, mention that you’ve been thinking about registering as an organ donor, and ask them what their wishes are.

When you hear about someone who has been a donor, needs a transplant or has had a transplant – on TV, or in a newspaper article, for example – use their story as a way to introduce the topic with your family.

Set up a group text message or online group chat with your family, so that everyone can make their donation decisions known at the same time.

Share your organ donor status on Facebook, by adding “organ donor” as a Life Event on your Timeline, and use this activity as a way to prompt a conversation with your loved ones.

Claire Leonard-Matthews lives in Canberra with her husband, daughter and two dogs. After her experience with her daughter’s childhood liver disease and transplant, she drew on her 20 year career in health related marketing and administration to found Liver Kids Australia, with the goal of raising community awareness and improving outcomes for children with liver disease. Liver Kids Australia is a DonateLife Partner.

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