A Tale of Two Beginnings
A recent family trip to the UK was an exciting event for many reasons, not least because we were catching up with close friends we had not seen since they left Sydney, seven years ago.
And that meant the meeting of two five year olds who share a name but have walked a very different path through life.
Giulia and I were colleagues for three years. We worked hard, we played hard and became great friends. In 2009, Giulia and her husband moved overseas, but we stayed in close contact. We were thrilled when we found out that we were both expecting our first babies within a few weeks of each other and thought it was hilarious that we had chosen the same name.
After comparing our experiences, Giulia and I decided to share the very different stories of our babies.
Alessandro was born 3 weeks before Alexandra, in mid-2011.
He was a healthy, happy little boy who was full of energy and kept his parents very busy.
Alexandra was born with Biliary Atresia. She kept us busy for different reasons.
While Alessandro was learning to sit, crawl, say the first words and interact with the people around him, Alexandra was fighting for her own life.
Alessandro’s world was filled with toys, books, walks to the park. Alexandra spent her life in and out hospital.
By the time of their first birthdays, Alessandro and Alexandra were a stark example of the impact of childhood liver disease.
In his first 12 months, Ale grew larger and stronger. He learnt to talk, eat, stand, meeting all of his developmental milestones.
However, Alexandra did not thrive. Her failing liver caused her belly to swell with fluid so she could not move around much, she had gained only 2.6kg since birth and we had spent 7 out of 12 months in hospital.
Alexandra received a liver transplant just in time for her first birthday, it was very successful and our family began the journey back to normality with a happy and healthy infant.
We are the lucky ones.
Tragically, childhood liver diseases have many adverse effects, not only on liver function, but also on a child’s growth, development and sometimes, intellectual achievement.
Our experiences taught us a great deal about childhood liver disease and how it is perceived. Despite the profound impact it has on the children and families affected, childhood liver disease has almost no public profile as a health issue in Australia.
- We learnt that the impact on families is long lasting. They need peer support and to talk to others who have been through it and understand what they are facing and how they feel. This applies to parents, siblings and the extended family.
- We learnt that GPs and Child Health Nurses need better resources to help them diagnose and refer jaundiced infants for further examination more quickly.
- We learnt that the clinicians who treat our children are often over-stretched, underfunded and poorly recognised for the lifesaving work that they do.
It’s with this mind and inspired by our experience that my husband and I founded Liver Kids Australia in mid-2013. Focusing on the families, the kids and the medical profession that supports them, Liver Kids aims to:
- Enable information sharing and peer support for children and families.
- Develop education for healthcare professionals.
- Raise community awareness of childhood liver disease.
- Encourage research into disease causes, treatment and care.
Ultimately, our goal is to achieve better outcomes for children with liver disease.
And what about Alessandro and Alexandra? Well, when you see them playing together now, you would never know that they had such different starts to life. This is the result we would wish for all children with a liver disease.
Do you want to know more about Liver Kids Australia? Can you help us help the children and families impacted by childhood liver disease?
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