I just wanted a normal life

When we recently shared Sarah’s story, we reported that we’d not heard from anyone with biliary atresia who had undergone Kasai surgery as early as 1983. Then Mitzi got in touch to say she had the surgery in 1981! She’s kindly agreed to share her story with us. We start with her mum, Sally. 

Sally’s story  

Mitzi was born in our local hospital in Norwich in August 1981 and even though I was a first-time mum, my instinct told me that something wasn’t right. She wouldn’t feed and seemed to be constantly screaming. I took her to the doctors several times but was reassured that she would settle down. I can’t remember what the symptom was which suddenly rang alarm bells, but I do recall that on one visit to my GP, I went from being treated like an over-anxious mother to being referred to Kings College Hospital in London.  

There, Mitzi was diagnosed with biliary atresia, a liver disease I had never heard of. Professor Mowatt told us that Dr Howard would be performing an operation known as a Kasai procedure which was a very new type of surgery in the UK. There were no other options for treatment – we just put our faith in the team at Kings and hoped it would work, and luckily it did. Mitzi’s surgery was carried out by Dr Howard just before she was 12 weeks old and she still sends him a Christmas card every year.  

At around that time there was an acknowledgement that the medical care for children with liver disease in the UK was not what it should be and a fundraising campaign began to help support children like Mitzi, which brought with it a lot of media attention. We knew the parents of Ben Hardwick, who was the first child to undergo a liver transplant in the UK, and I remember when the Michael McGough Foundation started. This charity subsequently became Children’s Liver Disease Foundation.   

I remember a doctor telling me that it was unlikely that Mitzi would make her first birthday, and then that she wouldn’t get past three years old. I also remember being told she’d never have children. But Mitzi is very strong willed – her whole life, she’s always proved everyone wrong, and I think that determination is all a part of her strength.     

Mitzi’s story 

I never really accepted there was anything wrong with me – I always just wanted to be like everyone else. When I was a child, I had hospital appointments every six months and I wasn’t allowed to do contact sports, but I didn’t know any different. 

I didn’t have to do much explaining about my liver condition to anyone because of all the publicity I had received. Everyone seemed to know my story and I must admit I didn’t enjoy that. I suppose it was a bit like being a celebrity without the support machine which celebrities get. I didn’t like talking about the fact I had biliary atresia and of course at that time I didn’t know anyone else in the same situation who I could talk to. 

I was 16 when I was told that I would need a transplant. I was on the waiting list for nine months and I received my transplant at Kings in June 1998 when I was 17. What I remember most about that time was not being able to have an 18th birthday like everyone else because I was still recovering.  

I know how lucky I am that my transplant was a success – I’m grateful to my donor family and to the transplant team. Over the years I had seen so many other children undergo transplant and then have complications, but I didn’t have any. 

One of the things I remember from that time was that I had lots of support and counselling leading up to my transplant but nothing afterwards, when I really could have done with it. I hope that’s different now. I found that I didn’t like telling many people that I’d had a liver transplant because on the few occasions I did, people assumed that I had needed it because of alcohol abuse. 

I’m not a drinker. I decided a long time ago that I don’t want to get a taste for it or start to enjoy it. I’ve spent enough time in hospital, and I don’t want to be in there again. 

I’ve always worked in the care sector, sometimes as team leader. Obviously, it’s hard work and there’s times when I’ve had to be extra careful, but I’ve never just wanted to sit around – I’ve always just wanted the same life as everyone else. 

I had my first child when I was 21. My whole pregnancy was a bit of an unknown because I’m not sure there were many people at that time who had undergone a liver transplant and gone on to become pregnant. Admittedly my pregnancy was very tough. A consultant from Addenbrookes had to come down to give some guidance and I needed to be induced, but my son, now 22, was perfectly healthy. 

Two years after that I gave birth to twins  – a boy and a girl – by caesarean section and it became clear quickly that there was a problem with my daughter’s liver. We were referred to Kings and she was diagnosed with a form of liver cancer. It was only when I was back on the ward with Kayleigh that I realised how poorly I must have been as a child and how serious it was. Thankfully Kayleigh was treated with chemotherapy, which was a success, and she is now a healthy 21-year-old. My youngest son has just turned 18. 

Having been told at one time that having children would not be possible, I do feel very proud to have four healthy grown-up children. When I was younger, I remember saying that I wouldn’t go through liver transplant again – but of course now I have my children that’s different. I would if I had to, but I’ll continue to do whatever I can to look after my liver – I attend all my appointments and follow medical advice. 

This doesn’t mean I don’t enjoy myself – I can still go out and have fun without alcohol. I always just wanted to have a normal life and although I admit I do get tired some days, I’m happy that this is what I have.