The Power of a Community

The Liver Kids Family Fun Day in Sydney in late September was a fantastic and fun reminder of the benefits of being part of this community, connected by the unique experience that is childhood liver disease.

First defined by the ancient Greek philosopher Aristotle, a community is usually recognised as ‘a group sharing or having certain attitudes and interests in common’. This is particularly true in the case of health conditions, where there may be no connection between people other than the experience of the disease they share.

Where rare diseases are involved, there are many benefits that can come from being part of a community, a key one is a sense of belonging. Community members have a shared experience which may not be understood by family members and friends.

That sense of belonging often leads to meaningful mutual support. Having a community to rely on means you have access to people who know what you are going through. In the case of a new diagnosis of liver disease, other families have been there too and can give the benefit of their knowledge and experience for reassurance and point you in the direction of resources that can help answer your questions.

Access to resources is another key facet of the benefit of a community. No matter how smart you are or how much time you spend searching Google, it is impossible to know and do everything by yourself. Access to a community means that new ideas, resources and experiences can be shared and discussed, to the benefit of all members. In the healthcare setting, a strong community can also provide access to key subject experts. The families who came to the Liver Kids Family Day were lucky enough to hear an amazing and inspiring update from Dr Gordon Thomas on the incredible leaps forward in liver transplantation at The Children’s Hospital at Westmead. There was also the opportunity to talk one on one with him and other members of the Liver team.

Possibly the greatest successes a healthcare related community can have are in creating impact and influencing change. The voice of a group will have a larger influence than the voice of an individual. As a community we can work together to achieve real outcomes that will have a positive impact on the health of children with liver diseases and post liver transplant.

We are lucky that our families, and most of all, our Liver Kids, can meet each other, develop supportive friendships and build a strong community. This way we can learn together, support each other, contribute to improving diagnosis and create better resources for future Australian children born with a liver disease.

The Liver Kids community is very young in comparison to many others and there is much we can do. As part of this community, what would you like to work with us to achieve? What are the milestones we should be reaching together? And how should we celebrate our successes?

Liver Kids Australia

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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