Katherine who is 21 and has biliary atresia, hopes that her story will give hope to other young people growing up with a liver disease.
I was just a few weeks old when my mum became concerned that my skin and the whites of my eyes were jaundiced. She expressed her concerns to her health visitor during a home visit fortunately things then happened very quickly. The health visitor referred me to our GP, who sent me to our local hospital, Daisy Hill. From there I was transferred to the Royal Victoria Hospital for Sick Children in Belfast where I was diagnosed with biliary atresia. I was just five and a half weeks old when I underwent the Kasai procedure, which was thankfully a huge success.
My early diagnosis means that I’ve never known anything else. As soon as I was old enough to understand, my mum and dad told me that I had a liver condition which I would have for life. They explained to me that it was a rare condition, it has no cure, and they don’t know why I was born with this condition. My mum and dad told me I would be on medications that would help my liver and that I would have regular hospital appointments.
I’ve spent my whole life in and out of the hospital. When I was six, I was diagnosed with portal hypertension and oesophageal varices and from then on, I attended Birmingham Children’s Hospital once a year for an endoscopy. But whether it was my annual visit to Birmingham or more regular appointments locally, I was always assured that I would be well looked after both by my family and the hospital. My liver condition has always been talked about, and I always asked plenty of questions growing up. As I grew older, I grew to learn more about my condition and have a greater understanding of it.
In addition to my biliary atresia, I also have a rare condition called situs invertus where my spleen was in the right-hand side of my abdomen and my liver is in the middle of my abdomen, although it should be on the right side. This resulted in even more medical exams, so I did have a lot of appointments as I was growing up.
As a child, I did miss out on school quite a bit due to sickness related to my liver disease. I was advised not to participate in contact sports such as football due to my enlarged spleen and liver, which was hard as I enjoyed playing a little bit of football in primary school. However, this is no longer an issue, as of January 2025, I had a splenic artery embolisation, as I had two aneurysms on my spleen.
Being asked what was wrong with me as a child never fazed me; I was always open to talking about my liver condition. I’m very open about it and have never minded being asked questions. As a child, however, I didn’t like showing my scar to people. It was something I always kept hidden. As I have got older, I have learnt to embrace my scar and not worry about whether people can see it or not.
My parents were put in touch with Children’s Liver Disease Foundation when I was little and over the years we have attended many events, which we have loved, and we have met some lovely families and children with liver conditions, some of whom we still keep in touch with. I have found this contact very helpful growing up, as it helped to know that I was not the only person living with liver disease, and I liked hearing other people’s stories as well. I know that my mum and dad found these events helpful too. They learned more about my condition, and it was good to know there were other families out there who could understand and support us.
Because CLDF was a charity so close to our hearts, we would always get involved in Big Yellow Friday. My big sister Hannah began fundraising in our secondary school, hosting a raffle, a non-uniform day and a bun sale, I carried it on when I joined and in total, we did it for 12 years! It was always a fantastic day in our school. We felt it was really important to make people aware of childhood liver disease.
Thankfully, since I transitioned into adult services when I was 18, my health has been pretty good. I’ve had only two bouts of sickness, and these turned out to be blessings in disguise as my aneurysms were discovered. Since I had my splenic artery embolisation in January this year I’ve been very well.
I’m now taken care of by the liver team at the Royal Victoria Hospital in Belfast. I go every six months for bloods and ultrasound of my liver and yearly for endoscopies.
I don’t know if all the time I spent in hospital growing up had an impact but I’m currently on my final placement as a student paediatric nurse! I should be qualified at the end of September and have secured my first job in a cardiology ward.
I’m happy to say that other than taking my twice daily medication and attending my routine appointments, my condition doesn’t affect me in my day-to-day life.
The main thing I would say to other young people living with a liver condition is that you are not alone. The Children’s Liver Disease Foundation has supported me and my family over the last twenty-one years and continues to do so. They are an amazing charity with so much support, advice, knowledge and always someone you can reach out to. Live life to the fullest every day whilst looking after yourself, and if you have a scar or a story, share it and embrace your life.
