Francesca, who is 21 and received a liver transplant when she was 17 months old, hopes her story will provide reassurance to other young people and their parents.
I was jaundiced when I was born but I was discharged from hospital as normal. It wasn’t till I was around seven weeks old when a health visitor came to visit us and said I shouldn’t still be jaundiced at this stage, that we were sent to our local hospital, the Royal Victoria Infirmary, for some tests. After the first blood test, the doctor told my parents they were almost sure it was biliary atresia, but I needed to go to Leeds St James for more tests to be sure. Further tests there confirmed that I did have biliary atresia and said I would need a Kasai operation immediately. This went ahead and initially everything seemed fine until my first birthday when everyone noticed I was yellow again. My parents took me back to Leeds hospital when they did further tests and said my bile ducts were blocked again and I would need a liver transplant.
I was on the transplant list for five months and during that time my health decreased significantly. It must have been a very difficult time for my parents who were told that if a liver did not become available soon, I would die, as I was so weak and poorly. Fortunately, a suitable donor liver became available, and the surgery was a success.
Of course, because I was so young, I have no memory of any of this and when I was little, I never really thought about it or wondered why I had to go to appointments and other children didn’t. In fact, the first time I realised I was little bit different was when my friends began to get piercings, and I wasn’t allowed. This might sound stupid but when you’re a child, things like that bother you.
As I got a bit older, I realised I have this huge scar that no-one else does. I felt as though I couldn’t wear certain tops that might slightly show it or bikinis on holiday etc, as I just felt things didn’t sit right on me. The scar itself didn’t actually bother me or make me feel much different – it was just the thought of showing it off. Physically, my transplant never had a negative effect on me. I was always very fit, good at running when I was at school, and I did dancing for years as well as several other sports.
When I was younger, I worried a lot about being left out when I got older because I wouldn’t be allowed to drink alcohol, have tattoos or piercings but when that time came, everything became a lot more relaxed as things were going well for me. I was allowed alcohol in moderation, and I was allowed tattoos and piercings, as long as I was extra careful. So that really stopped me from feeling isolated.
I first heard about CLDF when my mam ran the Great North Run for them when I was younger. I know she had received information and support from them when I was little. I remember meeting the team that day and standing with them when my mam was running. I also had contact with another girl my age who had a liver condition although we lost that as we grew up. However, as an adult I’ve been able to speak to parents of children who have liver disease and it’s lovely to reassure them with my story.
My health now is brilliant and I’m only on a low dose of medication thankfully. I am currently studying health care, and my goal is to become a paediatric nurse. My experiences have driven me to want to help and inspire young children the way nurses did for me when I was when I was little.
I have a two-year-old son who is fit and well and my partner, Nathan and I are now expecting our second child. I had a very good, healthy pregnancy as well as a great birth. And one of my son’s middle names is Lee, after my liver donor.
As I live over an hour away from Leeds, I get the option to do a telephone appointment now which is much easier as I have my son to consider.
To younger children who live with liver disease or post liver transplant I’d say never worry about your future because things change so much! The life I expected to have when I was older is completely different to the life I live now. I’m actually not much different to other people. So don’t waste energy worrying about it!
