Megan, who is 26 and was born with biliary atresia shares her story
I was six weeks old and my mum had taken me to the clinic to get baby milk when the health visitor took a look to see how I was getting on. She noticed I was very jaundiced and made a few phone calls. The next thing my mum knew we were being sent to our local A&E at Whiston Hospital where they ran a number of tests. We now know that I was showing very clear signs of biliary atresia – prolonged jaundice and white poop – but until that health visitor raised the alarm, no-one had said to my mum that these were danger signs and of course she didn’t know. By the time biliary atresia was diagnosed and I was transferred to Alder Hey, I was seven weeks old. I had Kasai surgery but it was unsuccessful. Of course now I know that the earlier a Kasai takes place, the greater the chances of success.
The following January (1997) I was brought into Birmingham Children’s Hospital where I was started on a new food formula to help me build up my strength. In fact I believe that this new formula was such a development that I was actually on the local news!
It worked and it kept me strong enough to wait nine months for my liver transplant which I received in September 1997 when I was 16 months old. My surgeon was Mr Buckley and I was looked after then and throughout my whole childhood by Professor Kelly and her team to whom I would like to say a big thank you once again.
I knew I was special
Although I can’t remember any of this, from a young age I understood that I had a liver transplant. My family would always speak about it and tell me how special I was to have received this transplant.
When it came to school, if I’m honest, I felt like any other normal school child. I did have more days off due to hospital appointments, which I didn’t mind as it was a day off school! I would tell other children that my scar was due to a shark bite and loved it when they believed me. I remember having to spend a few days in hospital with chicken pox which I didn’t like although I did understand it was only for the best. But generally in school and outside school, everyone treated me the same as anyone else, even in dance school which I loved. I would even show my doctors a dance I had learnt every time I had a hospital appointment!
It was only as I got older and my friends started drinking I knew that I couldn’t, but surprisingly it didn’t bother me. I still had fun when I went out and all my friends have always been very supportive of me.
Live life to the full
I’ve been very lucky in that my health has been great since the transplant. When I was younger I would have hospital appointments every three months and now it is every six months. I like to stay healthy by going the gym, and that has always helped me with my mental health too.
CLDF has been there all along with support for us whenever me and my family needed it and I know we have done fundraising for them over the years. They were always there for us no matter what and my mum always says she couldn’t thank them enough along with everyone else who supported us.
I currently work as a healthcare assistant and soon I will be starting my nursing training. Having a liver transplant has inspired me to become a nurse and help others. I also do dog grooming on the side as I am the biggest lover of dogs and all animals.
My advice to any young person with liver disease would be live life to the full as we are the lucky ones who got given a second chance at life. And if others make you feel different then so what? Different makes us special and means we stand out more. As you get older you’ll realise how unique you are and how other people find out how interesting you are as you look like any other person but your scar tells a story that others like to listen to.