A New Addition to the Family: July 2011

Alexandra was born in Canberra Hospital. By the time she was 3 days old she had lost 14% 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.

She was airlifted to The Children's Hospital at Westmead two days later where the diagnosis was confirmed. Alexandra had a Kasai Procedure when she was 15 days old, however, 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.

One of our key instructions was to 'fatten her up' so she would be a good weight at transplant time.

We had learnt our first lesson about childhood liver disease; it comes as a surprise and disrupts almost everything about your life

Christmas in Clancy Ward: December 2011

Within five months, we learnt our second important lesson about liver disease; that it impacts everyone a little bit differently. While other children responded to the regime of special formula and vitamin supplements, Alexandra didn't. She struggled to gain weight and every tiny increase was celebrated.

Shortly before Christmas 2011, she was hospitalised, her liver function was deteriorating and she was suffering from malnutrition.

However, despite our stress and ongoing sense of confusion about what was going on, Christmas in hospital wasn't too dreadful, it certainly came with lots of attention and presents for Alexandra!

She was listed for transplant in January 2012 and we returned to Canberra to wait.....

In the following month, Alexandra's father underwent the testing to become a live liver donor.

A Very Sick Little Girl: May-July 2011

In May 2012, we learnt our third lesson about liver disease; the weakened immune system means that infection can strike hard and fast, with devastating results.

After several months of good health and real weight gain, Alexandra went down with an infection that traveled very quickly through her system. After two days in Canberra Hospital she was transferred back to Westmead by the NETS team. She was suffering respiratory distress, had lost two of those hard won kilos and her liver was failing fast.

The medical team told us that a transplant was now urgent and that, as she was so small, using her father as a live donor was not an option (he's 6'4", considerably more than the recommended ratio).

After several weeks in hospital, we returned to Canberra, to wait again ….

We were extremely lucky, a few days before Alexandra's first birthday, we got the call that a compatible liver was available! It was 10pm on a Tuesday night in mid-winter. At 1am we were picked up by the NSW Ambulance Service for the 3 hour run to Sydney through thunder, rain and hail.

This picture shows Alexandra on her way into the operating theatre for her transplant. She weighed only 5.6kg and really only had a few weeks left…..

Zest for Life: December 2013

Almost 18 months down the track and 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.

We worry about liver function and immune suppression but overall, we have a great deal to smile about, not least that Alexandra now has no trouble putting on weight!