Clare features on the front cover of CLDF’s first supporter magazine, CHILD, which was published in 1990. Aged seven, she had just had a liver transplant at Birmingham Children’s Hospital. Here Clare, who was born with biliary atresia, describes her experience of growing up with a liver disease.
“As a child, I understood that I was unwell and the severity of my condition. The fact I could quite easily die was kept from me, but my parents and family made me aware I was quite ill and that was why I could not always do what the other children were doing.
“When the staff at the hospital explained to me and my parents that I needed a new liver, even though I was only seven, I remember feeling scared. Was it going to hurt? I think at that age, that was my only concern, I was too young at that point to think any further than the basic immediate fears.
“I was given a book called Anita’s new liver and that helped me to understand the concept of having a liver transplant and from that I did ask a few more questions to both my parents and the hospital. I can’t remember being too worried about being in hospital at first; I think my main comfort there was knowing a member of my family could always be next to me.”
Whilst Clare was comforted by the thought of her family being nearby, it was very different for her parents.
“We both felt very scared as we had seen her be ill almost as soon as she was born”, says Clare’s mum Debra. “We had been through some tough experiences as a result of her being so ill, and then to being told she needed a liver transplant, was just terrifying as at this point we were not sure if we would lose our little girl.
“We knew if she had the transplant and all went well, she may be saved but everything was such a gamble in those early days. It was a parents’ worst nightmare and we knew no other parents at the time who were going through this until we were in hospital with Clare. “
Fortunately Clare’s transplant was a success, but when she left hospital and gradually began to return to normal life, she faced many challenges.
“Luckily for me, I had a wonderful family who supported me with the amount of inconsistency I had to go through on a daily basis,” continues Clare. “However, primary school was very difficult for me. I spent months away from school too ill to attend, or with an immune system too weak to be around others, so when I did return, my peers had already formed their friendships, and advanced educationally beyond me. While at the beginning I was a novelty, time passed and I went back to being the odd one out that nobody wanted to pick to be on their team.
“I did experience some bullying and academically I struggled. I took part in most activities, although the hospital advised me not to take part in any contact sports. It was no fault of my teachers or family, but I felt very different from my peers and socially. I was very quiet and often sought out the comfort of adults. Even to this day I feel that slight upset if I don’t quite fit into a social situation. However, I am much older now and have all the tools to be able to deal with those rising fears.
I was determined that my liver condition wouldn’t restrict me and in my 20’s I spent a lot of time travelling to different countries – always consulting with the hospital first of course – and I am lucky to have had many wonderful experiences and great memories.
“It was around this time that I met my donor family. I heard what they went through and I was so moved by their courageous decision at such a heartbreaking time for them. It made me even more determined to live my life to the fullest and make not only my family proud but them as well. I travelled to explore the world, have obtained a BA Hons Degree and I am happily married with two beautiful children. I feel I owe it to my family and my donor to make the most of my life and not let setbacks hold me back.
My own family
I conceived my son not long after I got married and my pregnancy was quite straight forward. I did suffer a set back after his delivery and I had to be monitored very closely. The hormones and chemicals in the body led to the levels in my liver unbalancing and it took a while to stabilise. The hospital monitored me closely after the birth and after I left the hospital. The liver team were extremely supportive, and I had regular checkups, and contact to make sure all was settling.
Myself and my husband were then blessed to fall pregnant with our second child quite quickly. My pregnancy was straightforward, and although I was induced at 38 weeks, as both the doctors at the Women’s and the liver team agreed I should not go further than that, I managed to deliver our daughter naturally with no repercussions after her birth. I was even allowed home the next day.
Both my children are perfectly healthy. My son is a lively four year old who enjoys all the activities and adventures a child of his age should and my daughter is a thriving and happy baby girl.
My own health currently is good. I go back to the hospital between every four to six months for checkups. I take regular medication to ensure my liver doesn’t reject and occasionally they will rebalance my medication.
I am a deputy manager for a child care provider. I work four days a week so that I can spend time with my children. My condition doesn’t affect me or prevent me leading a normal working life.
My message to others
I think the main message I could send to parents now is please don’t lose hope. My transplant was done 30 years ago, when the field was in its infancy. Transplant medicine has moved on so much now, and those of us who’ve gone before have provided research evidence to further support the amazing work that the doctors do. This means that the chances of success, and the possibility of leading a normal life are greater than ever. My own life has been blessed and I am grateful for every day that the donated liver I carry has given me.
So if your child is facing transplant don’t fear the worst. The success of child liver transplants now is far better than the past, and I am an example of how a person can lead a successful and healthy life. I am grateful for that. I can travel, work, have children, all the things most people hope for.
Clare’s parents would advise others in their situation to seek support:
“There are others in the same situation and it can be a great source of comfort to speak to people who understand, says Debra. “The hospitals are better than ever at supporting families and through the liver units and CLDF you can get the information you need. It is easy to look inwards when times are difficult, but there are others out there who can offer support and knowledge. Make use of them!”