We love to be able to share the experiences of ‘grown-ups’ who have a childhood liver disease. So we are very grateful to Andrew, who is now 41, and his parents for telling us how Alagille syndrome affected their family.
Andrew’s parents Janet and Howard, recall feeling frightened by a diagnosis of a condition they had never heard of.
Andrew was our first child, he was just 12 weeks old when he was diagnosed with Alagilles. We didn’t even know liver disease affected children,” says Janet. “He was a happy baby but the scratching was a nightmare and there was no way we could stop it.
When he was two, we were told Andrew’s heart was affected. The doctor said it would probably not affect him until his mid years he was spot on.
Andrew’s younger sister and brother were perfectly healthy, and we always made sure his life was as normal as his siblings. He went to school and enjoyed playing with his friends, although regular trips to hospital were part of our life with little hiccups along the way.
It all changed when he was eight years old and caught measles. Over the next months he became seriously ill spending lots of time at Kings. It was a very difficult and worrying time, particularly when we were told that Andrew’s only option was a liver transplant. At that time they weren’t doing paediatric transplants at Kings, so he was transferred to Addenbrookes. Here we met Professor Roy Calne, who said that as soon as a liver became available, he would do the operation.
A liver was available the very next day and the surgery went ahead but sadly it was not successful. We were told, however, that it had kept him alive. Without it the doctors would only have given Andrew another three days. Thankfully another liver was found, and he had a second successful operation just days later.
After 10 weeks in hospital, Andrew came home with what felt like a pharmacy full of tablets. But he was here and although he has faced challenges since then, he has always overcome them.
Andrew is greatly respected at work and always gives everything the best he can. We’ve now celebrated Andrew’s 40th birthday. He has come such a long way and is an inspiration to us all.
Although I was aware that I had a liver condition when I was very little, due to numerous medical appointments, I don’t recall it affecting my life hugely. From about the age of seven, however, my health deteriorated. I became more jaundiced, my tummy got bigger and I would need an afternoon sleep at school.
I do recall the drama of being in an ambulance with blue lights, sirens and a police escort! And I also remember being in Addenbrookes for a while after my transplant and receiving lots of support from my family and all the staff. When I did eventually come home, I was no longer jaundiced, and the big belly had pretty much gone. I looked a bit more normal and that was good.
I had several medications, but I was used to that and in due course I returned to school and normality. After a couple of years, however, I started to walk with a limp and my left hip was painful. I was diagnosed with Pearthes’s Disease which is a crumbling of the ball and socket joint and possibly all joints. This was a side effect of one of the medications I was taking at that time.
So aged 11, I had two operations on my left hip to try and help this which it did for a number of years but unfortunately the result of the operations meant my left leg was now shorter than my right leg by almost 2cm.
Again, just got on with it and so did my parents. It meant we had to make a few adjustments with trainers and jeans but we never really thought about it too much. OK – I ran a bit funny but I was still playing football, so I was happy.
Things did get harder for me when I started senior school in 1991.Educationally, because I had missed a lot of school I was not exactly on the same level as everyone else and found it a bit harder.
On a personal level it was difficult because, looking back, at it I was bullied at school due to having a limp, one leg shorter than the other and I wasn’t a big or a tall person. Some days were harder than others and I would sometimes spend breaktimes on my own.
However, I got through it by building up a mental resistance and barrier. I knew it wouldn’t last forever but I suppose I would have liked to talk to someone in a similar situation the way young people can now through CLDF.
In 1996 I took my GCSE’s and got the grades in needed to go to college and do Business Studies. I needed a change and a clean break from school. It was the best thing I ever did.
During those three years, I met new people, some of whom are still my friends now. I passed my driving test and got myself a Saturday job.
All of this boosted my self-confidence and self-esteem. Soon after I left college, I got a full-time job in finance where I have been pretty much ever since. All my adult life I have enjoyed myself as much as I could. Yes, there were times when it was difficult, but I have done so many great things.
I’ve been on lads’ holidays, family holidays, stag do’s, weddings, football matches abroad in Spain and Germany, and seen England beat New Zealand at rugby. Me and my dad are season ticket holders at Spurs and I’m looking forward to the day when we can safely go back there!
I have always had the support of my parents, my sister and brother. I have nieces and nephews who I love very much and enjoy spoiling them when I can. I have my own flat, my own car, independence and a good group of friends.
The main health developments in recent years were in 2016 when I had a left hip replacement which took away the pain in my hip and reduced the difference between my left and right legs and last year when I underwent open heart surgery at Barts Hospital in London, to improve the blood flow and to help me to stop getting out of breath.
Having Alagille syndrome did affect me massively as a child but I feel I overcame every hurdle which was put in front of me. And although it still affects me in various ways, I’m still living a good life.
My message to anyone with my condition to stay strong, be positive, do all the things you want to do, and you will get through it with the love and support from your family and friends.