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!
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.
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.