Emily who is 25 and underwent a liver transplant as a baby, loves her job as a healthcare assistant at Royal Devon and Exeter hospital. But life hasn’t always been straightforward. We’re very grateful to Emily and her parents, Rachel and Ian, for sharing their own perspectives on how her early years affected them all. First we hear from Rachel.
Emily was about six months old when I first thought there were some issues. She still wasn’t able to sit up by herself. I took her to the health visitor every week to get her weighed and mentioned the fact that she wasn’t sitting up and it actually seemed like she was in pain when we tried to sit her up. Over the next three months we kept a close eye on Emily and then she started going off her food. In my subconscious I think I realised that there was something really wrong. At nine months old I called the health visitor and asked if she would come and see me because I was at my wits’ end. She came in and when she weighed Emily she noticed straight away that Emily’s stomach was shaped like a barrel and very distended.
She immediately sent me to the doctor who referred us to the Exeter hospital. On the 9th September 1999 our life changed forever. We saw a consultant and all I remember him saying was ‘lumps and bumps.’ The next thing, we were rushing down the corridors and having various scans and tests. We had to go to Bristol Children’s Hospital that afternoon and when we arrived Emily and I were put in a room. I could hear people talking about CLIC which I couldn’t understand because I knew that CLIC was for children that had cancer. It was the worst night of my life and I thought I’d gone to hell. Lying in the room with my obviously very sick child I felt very alone and afraid.
The next morning I wrote in my daily diary that we were on the cancer ward because the children were bald and looked pretty sick. I wrote in the diary how sorry I felt for these families and thank God that we were not in that position. Shortly after that we were told that Emily had hepatoblastoma, a form of children’s liver cancer.
We started chemotherapy straightaway but after the first week Emily had lost 10% of her body weight and we had to go in to have a nose tube fitted. Unfortunately Emily had rotavirus and so could not have a the tube fitted and so we ended up with Emily having TPN through her Hickman line which meant that we then lived in hospital for the next four months. It was a very emotional rollercoaster ride of Emily picking up one infection after another. I would watch people going about their everyday life happy and laughing and I would think how can they be happy and laughing when we are in such agony. It felt like I was wearing a mask to disguise the pain that I was in. After six months of chemotherapy we saw an oncologist at Birmingham Children’s Hospital who wanted Emily transplanted as soon as possible. Time was running out as she had had all of her chemotherapy and if we didn’t get a transplant soon the cancer would come back and it would be too late.
I distinctly remember our first call to go up for a transplant. We went through all the checks and it was only in the morning as Emily was being prepared for surgery that we were told that the liver wasn’t good enough. I actually felt relieved as I wasn’t emotionally prepared for it at the time. A few weeks later we had another call and this time it went ahead. I thought I felt more prepared but seeing my 18 month old child be put to sleep ready to have this transplant was absolutely terrifying. I had to be physically removed from the theatre. We knew we had two hours to wait while they opened her up to look and see if there was any more cancer that spread. If it had they would’ve closed her up and that would’ve been the end – nothing more to be done. It was the longest two hours of my life. Thank God the transplant went ahead.
A few hours later we were taken to intensive care to see our baby girl hooked up with lots of tubes and wires attached to monitors. It was a very scary time. We didn’t want to let our son, who was days off his 4th birthday, see her because we thought he would find it frightening. However he got so distressed at not being able to see his sister that we had to take him in and all he said was “oh but she’s asleep”. We couldn’t believe it but a couple of days later she was sat in a special chair in intensive care watching Tom and Jerry. She didn’t even end up in the high dependency unit but straight onto a side room on the ward.
It was hard when she first went through rejection as my husband had to take our son on his fourth birthday to visit with his grandparents. It was really tough but I couldn’t be in two places at once. I was on my own with a sick child going through rejection and it was terrifying not knowing whether she was going to be okay. Thankfully after three weeks of intensive training how to give her the drugs that she needed which were many, many times a day, we were allowed to go home. Again this was very scary as we were on our own, but I learnt very quickly how to look after her. The whole experience was certainly very traumatic and life changing. We lived about three hours away from Birmingham and had to go up frequently for checkups. It was all very stressful and we would come home feeling exhausted and sick. We decided to try and make hospital visits a nicer experience so ended up staying the night in a hotel in Birmingham and we would get the hospital bit out of the way and then we would do nice things like going out to lunch and treats for the children to try to make it a happier time. It did take a toll out of all of us though and I have PTSD following this experience.
We found out about CLDF during our stay at the hospital but only ever met one other child that had a transplant following liver cancer so it was a very lonely experience. I don’t think the support available then was what it is now. So it was very hard for us all. I do remember that we stayed at Edward’s House around the corner from the hospital and every day at 3pm a lovely gentleman who I think was called Martin would bring in cake and all the parents could come and sit and have tea and cake and talk and just pretend for a little while that everything was ok. For us it was an absolute godsend and I will never forget the kindness there.
My heart goes out to any other parent who faces what we did. I would say get all the help that you can because you will need it. Take one day at a time. Try and find one thing that you like to do in the day even if it’s a simple as getting a nice cup of coffee or reading a book for a short period of time anything that gives you a little bit of time out. Find out what charities can help you. If you meet parents in a similar position it’s good to talk. If you are offered any sort of counselling take it.
Ian’s story
It was nearly 25 years ago when our daughter suddenly became ill. She had just passed her eight month check by her GP, then only a few weeks later could not hold any food down became quiet, pale and failed to interact. She was fast tracked to a consultant paediatrician at our local hospital and I recall his words to this day as he gently pushed her stomach: ”I don’t like this, I am making an immediate referral to Bristol Children’s Hospital. You need to get there tonight.”
In Bristol she was diagnosed with hepatoblastoma, a tumour in her liver the size of a small football. From Bristol it was Birmingham Children’s hospital, intensive chemotherapy to shrink the tumour and then a transplant.
I recall we were given limited information about our donor – just their gender and age, but you could write to the family. I wrote three draft letters, none of which I could send, because I felt I was dragging up their grief of their tragic loss against our reward of a gift of life. I still reflect on this and it still burns away inside me to this day as a regret.
The whole experience was an absolute nightmare for me and Rachel. At the beginning it seemed like a bad dream but when you woke up it was real .We handled it in completely different ways. I am a Northerner brought up to believe men don’t cry, stiff upper lip, you get knocked down you get back up .On reflection now this is likely to be language for many totally out of touch with today’s values.
My advice to other families would be to respect each member of the family in their way they handle this trauma. There is not a right or a wrong way, you handle it your way, the way that is best for you. Don’t form critical views or opinions of each other, you all need to stick together and protect and support each other. For instance Rachel never has and still doesn’t want to know any details of Emily’s donor. I do, which has been useful because Emily wanted me to disclose them to her now she is an adult, which I have done .
Rachel took the main caring role. She gave up work ,while I continued my role as head of a department, in the NHS – ironically a clinical lead so very used to hospitals. I recall trying to maintain parts of our life we were in control of and protect the normalities of the old life . We wanted to keep life as normal as possible for our son, Jonny, and at the same time, protect my job, you still need an income .We both agreed this was the best way forward for our family. For me work became a therapeutic distraction but it was not always easy to keep focussed.
My message to any parents who are facing such an ordeal is you will get through it. It’s a long journey, a roller coaster ride of good days and bad days .You feel like your family is in a bubble. You can’t get out and you see your friends outside the bubble getting on with their lives while you have this crisis hanging over your heads every day which doesn’t disappear and becomes your new life. People you know you may cross the road to avoid speaking to you simply because they don’t know what to say. Don’t make a judgement on those people and don’t hold grudges against them. You need to focus your attention and all your energies on your family . I recall for me it was when Emily reached five years old I saw the bright sunshine of hope and began to relax and let go.
Charities were a great support to us: Children’s Liver Disease Foundation, CLIC and Edward’s House (sadly no longer there) just to name a few. The consultants, nurses all the hospital staff are the unsung heroes – they were a lifeline and we shall always remain indebted to them. We did some fund raising in the local gym , sporting challenges, raffles and an evening disco I recall. This was a small token of appreciation compared with what help they gave us but lots of small contributions make a real difference and it felt good to do something positive.
Emily’s story
Because my illness and transplant took place when I was so young, I have always known about my liver. One consequence of having a serious illness as a child and spending so much time in hospital is that you miss out on essential social development. For example as I spent most of my first three years with my mother, I would only speak to her – I wouldn’t talk to anyone else. I had speech therapy as a result and I want to reassure parents that the therapy worked, now I can’t stop talking!
I think I first really noticed the impact of what I had been through was when I was in Year One of primary school. I felt unwell so often and missed lots of school. I had to have three weeks off for mild chicken pox, even though I’d had a painful zig injection to try and prevent me from getting it and had limited my contact with the other children to try and avoid it , I still got it. I remember having my own hand soap in school to decrease my infection risk. But I still caught tummy bugs, sickness bugs, flu bugs and I had to avoid the other children when parents didn’t adhere to waiting for 48 hours before sending their children back to school. I was worried about catching sickness bugs throughout the entire time of primary and secondary school, as this interfered with my tacrolimus levels. The other children didn’t understand why I was avoiding people who were physically sick. I missed so much school that it really affected my learning. I struggled to absorb tasks and I was told off my teachers for ‘not listening’. But I kept forgetting what I was told to do and I was too embarrassed to ask for help.
As my time progressed at primary school, I continued to struggle with forming friendships with the other children, as I felt incredibly different. I had a swollen belly for years due to treatment, I had a large cancer scar, I wore a medic alert bracelet, and I felt very lonely. My mum suffered from a sliced disk in her back and sometimes would be unable to collected me from school so I knew when my dad picked me up from school, my mum was unwell again. Primary school was very challenging.
I did, however meet someone at school who also had difficulties forming friendships with the other children. They had behavioural issues and the other children didn’t understand this, however, I knew how difficult it was to be on my own, lonely, and we became friends. We stuck by each other throughout the rest of primary school and secondary school. We always stood up for each other and we knew what it was like to be different. Unfortunately, we drifted apart as we went to college, but I’ll never forget how much they helped me with not being on my own. I told off every person that asked me why I was friends with them and told bullies that we are all different, and they would hate to be treated the way they were treating my friend.
I’m happy to say that I found senior school much better. I finally had a voice. I could express myself, and I was respected more for having had cancer in the past. I was older; I could understand my condition more; why I needed the monitoring and the operations to review the progression of my transplanted liver. But I still had difficulties. I had issues with my ears from chemotherapy and I made myself feel unwell from working too hard to try and catch up and achieve good grades. But I found it much easier making friends. Although I still had my bullies, I enjoyed secondary school and I had a few teachers whom saw potential in my education, and I passed all of my exams, I have three A levels, an AS level, and a foundation diploma.
Another consequence of being seriously ill as a child is that you have to have very adult conversations early on. For example I was told from a young age that I’d be more susceptible to skin cancer if I had too much sun exposure or I burnt too often. And when I was a young teenager, I also spoke to a doctor about potentially having to freeze my eggs in the future, as I may not be able to have children. Although all these adult conversations meant that my communication skills with adults were better than others of my age, it was very stressful, as I couldn’t be a child for very long.
Unfortunately, a few weeks before my A level exams, my mum and gran were diagnosed with cancer within two weeks of each other. This was incredibly challenging to process and I didn’t make the best decisions. I suffered badly mentally, and I really struggled with my second and third year at college. My teacher in my third year was not understanding, and she made college very difficult for me towards the end. But I made it through, and I passed. During my second year of college, I suffered from anxiety and depression. I used to have to leave lessons, as I had panic attacks in the toilets. My friend, Erin, used to come and find me. We are still close friends to this day.
Although I have met one other person who’s been through liver transplant I’ve always felt very much on my own with my condition. I had never met someone that had a transplant due to cancer, as both scenarios are incredibly rare.
Once I left college, I did a tattooing apprenticeship, but I left due to Covid and did feel very lost about that time. I did a few retail and hospitality jobs until I found my current job as a healthcare assistant at the hospital. Having had the tough medical journey myself, I now feel really determined to make something of my life. Someone gave me half of their liver, and I have to make something of my life for my donor’s sake.
I now work in general theatres where I meet others going through cancer, and I help them through their operations. It’s the most rewarding job. I’m hoping to study and get my Operating Department Practitioner qualification in general theatres.
My advice for other young people with a liver condition would be to:
- Ignore people who are hateful. They are a waste of energy and they’re honestly not worth your time.
- Don’t stress about where you are in life, I’ve done it and it’s exhausting. You’re doing great and keep going. Life is unpredictable. It’s so hard, but it’s a blessing and you must appreciate the positive things that are there. You will look back and appreciate every moment.
- Don’t worry if you didn’t get the grades you wanted and you didn’t go to university straight away. Your life isn’t over, it’s just not what you planned and you will find your path. Some people just find it earlier and some later. I’m finding mine again at 25.
- Never date someone that doesn’t accept your condition. You should be proud of your scars and wounds. Your body fought to be here, and you deserve a place and someone that worships you. You will meet people that do and people that don’t. Surround yourself with the people that do.
