Childhood Liver Disease and Siblings

One of the things that we worry about as parents of a child with liver disease is how our other children will be affected by having a sibling with a serious and chronic illness. How are they impacted by the diagnosis, long hospital stays and major surgical procedures? We muddle on through and hope we get things right, but it is stressful. This month we have asked a Liver Kid’s sibling to do a guest post and give her perspective.

A Sister’s Story

When I was three my little sister had a liver transplant. She is a happy and healthy girl now but nine years ago it was a different story. When she was born, I was so excited to have a little sister, but then we found out that she had a liver disease. This meant that we had to do lots of travelling between the hospital in Sydney and our home as she had lots of hospital stays

In the end, we spent four months living in the long stay unit below the hospital. I hardly ever went home as most of my family was in Sydney waiting for the transplant to happen. Almost every day I went to the sibling care. I had a lot of fun and the volunteers who worked there were nice, but it wasn’t really the same as spending the day with my family. Everyone who worked around the hospital used to say hello to me and the ladies in the cafeteria called me Shirley Temple (I have really curly hair).

Because of my sister’s transplant we have to do lots of things a bit differently. I get a flu shot every year, which I absolutely hate, so that we can protect her from getting sick.

Every time we pat our rabbit or our cat we have to wash our hands and when we get home from school or have been outside, we always wash our hands. We worry about germs and hygiene a lot more than most people seem to. We go to Sydney twice a year for her checkups, and I always like to go, because I worry about her and want to make sure everything is OK. Plus, I can go shopping while we’re there!

Sometimes I get a bit jealous of the attention my sister gets and the fact that her transplant means she gets out of doing some things in PE at school. Her transplant doesn’t really affect my everyday life though, it’s just normal to us. I think it did make us really close and I do worry about her and want to look after her.

My sister wants me to finish by saying she is an amazing survivor. I do think that, but I would never admit it to her!

More Informationhints-for-supporting-your-liver-kids-siblings

For more information on the impact on families of childhood liver disease, please visit our YouTube Channel to see Dr Michael Bowden’s presentation at our Conference last year.

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Share Your Experience

Liver Kids is in the very early stages of planning some work focused on supporting families and siblings in particular, we would love to have your thoughts and feedback on the biggest issues for your family and how you have managed them.

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 differenabout-biliary-atresiat 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.

alessandro-4

allie-3However, 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.

ale-and-allie-playgroundAnd 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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