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.
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.