I left the GP surgery in tears and when I got home, I rang the health visitor and insisted on a visit from her. She repeated the GP’s theory that I should be assessed for post-natal depression, but I insisted I was not depressed – there was something wrong with Ella. She was my second child, and I knew this was not how things should be. Thankfully at that point, the health visitor witnessed Ella projectile vomiting after a feed and sent us to the local hospital for a review. 

 We went straight to A&E and within minutes we were admitted to the children’s ward for tests – finally someone was taking us seriously! After days of various tests and scans Ella’s consultant sat us down and told us there may be a problem with her bowel which needed further investigation. Further tests confirmed that her liver was in trouble, and we were being transferred to a specialist unit. 

 Dr Barnard, Ella’s consultant in our local hospital, was nothing but amazing. He sat us down and explained everything and said we will be going to Birmingham Children’s hospital where they have an incredible success rate with liver transplants. We had just a couple of hours to arrange for our three- year- old daughter Lydia to be cared for by her grandparents and at 5pm, we started the long worrying journey to Birmingham with our baby blissfully unaware of anything that was happening. 

 The journey was horrendous – I just could not stop crying with sheer panic and worry. We arrived late at night with no real idea of what was going to happen.  The very next morning Ella was taken to theatre for a procedure to try and explain what was happening. The tests continued over several days and as Ella became weaker and weaker, it was decided she should be NG fed.  After 10 days we were told that her liver was diseased, but the cause was unknown.  We were discharged from Birmingham back to our local hospital in Clywd but every two weeks went back to Birmingham to see her consultant. 

  Fast forward two years with lots of hospital admissions, catching every bug going, severe itch, and distended abdomen, we went to a routine clinic appointment in April where Ella’s consultant was seriously concerned and made a phone call up to the ward asking when the next transplant assessment bed was available.  I clearly remember him saying ‘No – I need something sooner’. We were sent for some blood work and weight checks and when we were called back in, her consultant explained that Ella’s liver transplant would take place sooner rather than later. He said the way things are, she might not see Christmas. 

 As parents we just couldn’t think straight and felt numb … we were told to go home, and somebody would be in touch. Half-way home we had a phone call asking us to go back the following week for transplant assessment. So,k we returned that week for five days’ assessment and Ella underwent every single test known from head to toe. For us it was tiring and worrying but our little lady just smiled as she always did and never ever cried even when she was in the most awful pain with her huge, distended tummy and her severe itch (which nurses said was the worst they had seen!)  

 Ella had not had chicken pox, so she had to have the vaccine which put things back by two weeks but before the end of May 2008 she was finally listed for transplant. 

  It was just weeks later, just before midnight one evening when he had a call from Pete, the transplant co-ordinator, asking us how Ella was and if she had any sniffles. I remember thinking what a daft time to ring us asking these questions. The penny didn’t drop until he said ‘Well you best start making your way to Birmingham, we have a potential liver!’  

 At 1.15 am we wrapped our little girl up into her car seat all packed up and gave lots of kisses to her sister, who was once again in the care of her grandparents.  I felt absolutely awful leaving her, but Ella needed us, and we had to be strong for the next few days and weeks. We arrived at the hospital just after 3.30 am. I was scared stiff, cradling my baby tight in my arms, not wanting to let go of her! She was taken straight for bloods and a cannular insertion, numerous clinicians came to see us, and at 8.40 am it was all systems go. We took her into theatre… she looked SO small in that room with so many people and all that beeping, our little girl still smiling back at us totally oblivious of what was about to happen. 

 We kissed her on her head and left her with her dolly, lucky Lucy. She still has her to this day, and she is 19 years old now! Lucky Lucy has been in every theatre trip and hospital admission and believe me there have been a fair few!   

 We walked away sobbing with fear and worry and we were told to go and have some rest as we would need to be strong for when she was back in intensive care. It was seven hours before we heard that she was doing really well and that we should go to ITU for 7pm. The whole day was nothing more than a nightmare. We just stumbled around Birmingham city centre drinking endless cups of coffee peering into shop windows trying to take our minds off what was happening. 

At 7.40 pm our little girl, looking so small on a big bed, was wheeled in attached to a million and one loud noisy machines. It looked so scary, but we could see straight away that she was pink and not jaundiced and her tummy was flat.  Although I was scared to touch her with all the wires attached, and she was on a ventilator machine, I stroked her hair and kept saying how very brave she was and that she was going to be ok. After 12 hours, she was weaned off the ventilator and her recovery was going brilliantly until the ninth day when she had the dreaded bile leak! That was terrifying. She was rushed back into ITU looking so frail and was then taken into theatre where she was fitted with a bile bag and received a blood transfusion. Thankfully after four weeks with the bile bag and strong medications, the problem was resolved and after six weeks we were allowed to come home! 

 Throughout her childhood, Ella spent so much time in and out of hospital. She’s suffered with sepsis, ecoli, and every bug known to man. She even had to have her salivary glands removed but she remains a real trooper!   

As a family we are naturally passionate about raising funds and awareness of childhood liver disease and organ donation and some years after her transplant we met Lindsey, mum of Ella’s donor Jess (both pictured below).  We’re now all really close and Jess will always be our shining star, up above, forever 17 How two families became one thanks to a teenager’s amazing gift of life – North Wales Live

Despite everything Ella has been through and continues to go through -including having to be fed via a peg as she struggles to absorb nutrients from her food- Ella has never complained and continues to deal with whatever life throws at her. She is currently doing a foundation course, as she missed much of her last year of school through illness, and her ultimate goal is to be a paediatric nurse. 

We are incredibly proud of her and of course forever grateful to our shining star Jess and her wonderful family who gave Ella her second chance at life. 

“My remaining liver lobe was 60% back after a week and fully regrown in three weeks. The wound took a while longer but wasn’t too bad and there’s no lasting effects at all, just a cool scar. In fact, I did a half marathon 12 weeks after the op! “  

 Harry’s surgery was also a success and from 2016 until November 2023, he had amazing health. He conquered Ben Nevis aged 11 and Snowdon (Watkin Path – toughie!) when he was 12.  Harry loves swimming, biking, school, Lego, cats and gaming. He and Simon have competed regularly at the British Transplant Games and won many medals between them. 

 Sadly, over the past year problems in Harry’s bile ducts and surrounding arterial system meant that he has since spent many months in and out of hospital. In August the decision was made to relist him for transplant. Living donation is not possible this time because of the issues surrounding his liver. This came as a double blow to Harry’s family as they had found this process so straight forward and really appreciated being so actively involved in Harry’s care, as well as having a date to work towards.  

 “The uncertainty of waiting for the call (which could come at any time), bags packed, whilst trying to keep Harry well and out of hospital makes for very difficult times,” says Clare. “He has very little energy and our family’s world has become very small.  If it was possible, we definitely would have embraced living donation a second time. We would actively encourage other families who find themselves in this situation to consider live donation and discuss it with their transplant teams. And of course we would encourage everyone to share their wishes about organ donation.”  

We send our very best wishes to Harry, Simon and Clare and thank them for sharing their story. If you have a living related organ donation story you would like to share please contact press@childliverdisease.org

I qualified as a nurse when I was 25 and chose to specialise in paediatric nursing. My nursing career is largely unaffected by my transplant. I did shield during lockdown and I do avoid looking after patients with herpes virus where possible, likewise children with chicken pox or infected eczema. However, if I was in charge and there was an emergency situation I would still be involved. I work in a general paediatric ward where you can’t avoid germs but that’s ok . I’m pretty robust. I still work long shifts both days and nights.  

For many years I didn’t really overthink the baby situation. I don’t recall anyone ever discussing with me if it would even be possible, in fact my original assumption was that it wouldn’t be. As I got older, I realised people did have babies post-transplant. However when I was younger, I never truly understood the likelihood of me having them and it wasn’t something I asked about. 

As I got into my 30s and met my partner, I started to think a baby was something I wanted. Unfortunately, we had three losses prior to a successful pregnancy, and it began to feel felt like it might never happen. When it did happen I found that pregnancy and working was exhausting and I was advised to come off nights as I was struggling. I also needed an iron infusion. I was under a consultant locally and was kept an eye on regularly and seen once in Kings. I was fortunate to be well throughout from a liver perspective however, although I understood the risks of my baby being small, and me having gestational diabetes, pre-eclampsia and obstetric cholestasis. 

All was well, however, until around 33/34 weeks when the placenta blood flow and growth of baby started slowing and I began to have reduced movements. I was then monitored almost every other day, until it was decided he was no longer growing enough and needed to come early. It wasn’t a big drama or emergency but a caesarean section planned for a few days later. The C section was actually my choice as I was concerned I might have lots of adhesions which I think increases risk of bleeding.  

So, Ernie was born at 35 weeks and five days, weighing 4lb 1oz. He spent eight days in special care to feed and grow then we came home. 

Being a Mum is hard!! It’s not been a particularly easy journey for us. Ernie has had lots of little issues such as bad reflux, colic, cows’ milk allergy and an inguinal hernia which needed repair at four months old. As he has grown, things have got easier. He’s now just had his first birthday and is mostly such a happy little boy. He is very precious as I don’t think I will go through another pregnancy given he came early, and I feel very lucky to have got away with no real complications myself or for my liver.  

Although Ernie is still little for his age he is doing amazingly otherwise with his development. 

I couldn’t have got through the challenges we’ve faced the last year without my mum and it makes me realise how tough it must have been coping with a baby with a serious condition. She’s incredible! 

We travelled three hours the next day to Birmingham. We arrived at Ward 8 where we unknowingly entered a whole new world of liver disease. A couple of days later, after scans, blood tests and other investigations, our four week old little boy got taken to theatre, which is where he was diagnosed with biliary atresia and underwent the Kasai procedure. 

He recovered well from this and he was ready to be discharged not long after, which was great, and although I struggled to adapt without the comfort of all the incredible nurses, doctors and staff that we had met during our two weeks in hospital, we were ready to hopefully settle back at home with our baby.  

Bobby had to have weekly blood tests and weight checks locally and was due to be seen by his consultant in Birmingham in two months. It was at this appointment, on 22nd December 2015, just before Bobby’s first Christmas that we were told, due to his bloods not improving and his weight gain being non-existent, that unfortunately they believed the Kasai procedure had failed, and Bobby would need a liver transplant in the near future.  

Thankfully we were able to return home for Christmas with a date booked in the new year for Bobby to undergo a transplant assessment. This involved a week full of intense meetings, tests and information. By the end of it, however, Bobby just wasn’t well enough to go home, and we were told we would be in hospital for a while.  

It was decided he needed to be listed for transplant, but he also needed to gain weight to ensure he was strong enough for such a big operation, so they began to feed him by TPN. After nearly three months of living in Birmingham Children’s Hospital, three hours away from home, Bobby became strong enough for us to be able to go home for a while and wait. 

During the week of the transplant assessment, both Kieran and I had been told that being a live donor was an option. Neither of us hesitated to make the decision that if we could, we most definitely would donate no matter the risks, if it meant we could save Bobby, and give him a second chance at life. We both underwent some tests as soon as we were able and it was determined that as I was smaller built and Bobby needed a smaller liver as he was so tiny, I could potentially be his donor. This is when I started the process of more in-depth tests to make sure everything was good enough for Bobby to have a piece of my liver if the call didn’t come in the meantime.  

After one false call and some hiccups due to a couple of issues with Bobby’s veins, on  22nd June 2016, I went into theatre in the Queen Elizabeth Hospital in Birmingham to have a piece of my liver removed, whilst Bobby went into theatre in Birmingham Children’s Hospital to receive that piece of liver.  

We both recovered okay, I had a few issues with pain and medication effects but the worst bit for me was not being able to be beside Bobby as he was recovering, because of this and because I was so determined to see my baby, I managed to get myself well enough to go and see him after just a few days. A  couple of days after that I was discharged. Bobby did amazingly in his recovery and was discharged after just two weeks.  

Since transplant Bobby has been doing really well, with minimal admissions. He does unfortunately suffer with portal vein thrombosis, for which he has endoscopies every one or two years, thankfully his varices have never caused any issues. Also, at his five- year post-transplant check-up, they found him to have hepatic artery thrombosis. However nothing can be done to solve this issue except close monitoring, so Bobby has blood tests locally every three months which Birmingham review, and then every year we take a trip to Birmingham for his consultant to see Bobby face to face and for him to have an ultrasound. Other than that Bobby seems as healthy as any other child and we’re so grateful for this. 

I don’t feel that his liver condition has impacted his education too much. He may miss a morning or an afternoon for an appointment, but I try and book the longer ones in school holidays. Also, we were fortunate that the majority of his treatment happened when he was quite young before starting school.  

With activities, we’ve always said that we would allow Bobby to do as much as a child that hasn’t had a liver transplant could do. The way we see it, he was given a second chance at life and we believe that he should be able to live that life as he wants, doing the things he loves, without us restricting that, which is what we’ve done ever since he was transplanted. Obviously, we as his parents take precautions where we need to keep him safe and well and Bobby understands there may be some things, more so as he gets older, that he may have to think extra carefully about, but for now we live each day as it comes and make sure we live it to the full as we know how quickly things can change. 

Bobby loves drawing, reading books and going fishing with his daddy, as well as playing with his friends and his younger sister and brother. 

We were first introduced to CLDF the first time Bobby was first admitted onto Ward 8. We were given information packs and I remember speaking to someone too. From that moment anyone we have come into contact with from CLDF have helped us massively, from the packs they provide for us to hand to nursery and school to always being on the end of an email if there’s any other support we need. The Facebook page is also very informative too which is a great help. We’ve been so grateful to CLDF that we  fundraised for them back when Bobby was first diagnosed and would love to one day do it again. 

I also want to add that another form of support that has helped me is the ‘Liver Mums’ Facebook Page. Obviously dads, grandparents etc can use it too, but for me having that group to post in, to be able to talk to others going through similar has been a life saver for the last 8+ years and we have actually made friends with other families too which is lovely because they just understand. 

I had to stay at the hospital intensive care unit. That was the protocol for patients post procedure. At the intensive care unit, I was allocated a nurse to monitor me around the clock. One nurse would work 12 hours then another would come for the next 12 hours. During this time, I was strapped to so many machines, monitoring everything – Big Brother style! The doctors would carry out two rounds, one in the morning and one later in the day.  

I was given my meds regularly; blood was taken routinely. Intensive care is exactly that INTENSE! It was very busy all the time. So many noisy machines, patients, staff, distressed family members. I just wanted to be in a quiet place, preferably in my own room! 

One day my nurse asked if I wanted to be moved into a quiet corner of the ICU. I thought ‘Oh finally yes please!’  I was so tired but relieved to be moving from the ICU centre stage. Later that day mum asked if I wanted to watch a movie. In reality I wanted to walk around but didn’t have the strength and was still attached to too many machines so I thought yes may as well watch something….  

Guess what I ended up watching? Aladdin! 

Over the next few days, I got to play FIFA on PS4 –this was the time I was introduced to football! 

I was becoming quite frustrated with being confined to the bed, some days I just wanted to get out of bed and walk. I missed my family, friends, home and my room. I fell asleep and woke up to my parents laughing and telling me “Santa Claus” was here to see you, but you were fast asleep! I thought they were saying that just to humour me. But surely enough they showed me a photo of Santa Claus posing next to my bed! 

That cheered me up a little bit, I noticed the odd bit of tinsel and decorations were being put in the ward. Christmas was fast approaching, no chance of me being at home for Christmas though. Just as I was thinking about this there was a sudden appearance of someone beside me. As I turned around to look at who it was, I was dumbfounded it was Iron Man! 

 My childhood hero! I was so thrilled to see him (remember I was only eight years old). He stayed a few minutes chatting with me before going to speak to the other children. That really lifted my mood. I even had a photo taken with him. 

The following day my consultant told my parents that I would be moved to Ward 8 on Christmas Day. “Yippee!” I thought. It was great finally moving out of intensive care, everything smelt so clinical, like antiseptic cream or even Dettol. Ideally, I wanted to go home but knew that was not going to happen anytime soon. I was pleased to be going to another part of the hospital, hopefully it might be a little quieter. I was wondering if the food would be nicer than the soggy soft food I was given daily at intensive care! It’s strange that, before my procedure I always wanted soft food but now it seems that I wanted to try something different. Ideally, I wanted to go home.  

On Christmas Eve Mum started to pack my things to take to Ward 8 and told me to rest. Everyone was in good spirits wishing each other a Happy Christmas. I eventually dozed off, after watching a few episodes of Robin Hood.  In the morning, I woke up surrounded by presents. Well, that was unexpected, I didn’t think I would get any presents in hospital.  Then I remembered Santa appeared at the hospital so Santa’s helpers would have taken charge of delivering the presents! There were presents for all the sick children in intensive care! 

Such a great memory on my last day at intensive care, we thanked all the staff for looking after us and waited patiently for the staff from Ward 8 to come to collect us 

When the nurse came to collect us, I was still in my hospital bed with all my equipment. The nurse told my parents that they would still monitor me in Ward 8 but not as often as in intensive care. Oh, great I thought, so I will still be under surveillance all the time, no escape from Big Brother!   

On arrival I was pleasantly surprised with Christmas decorations, lots of colourful tinsel, baubles and even a medium-sized blue Christmas tree in the corner of the ward. 

The nurse pushed my bed towards one corner of the ward. She told me that” as patients improve gradually, they move towards the far door- the exit door”. In other words, the door to freedom!  In my head I thought so that door is my goal…  

That evening after I had settled in, a couple of nurses came with packages. As they drew near, I realized they were carrying presents. Both nurses smiled and gave me the packages with a “Merry Christmas”. I was so surprised and shocked. So many presents, I thanked them and tried to unpack my packages. I was very tired, so much upheaval on that day, but I was so overwhelmed with all the kindness from the hospital staff. What a memorable day that was! 

The second day that I was at Ward 8. I didn’t quite feel very well, I felt my stomach was starting to bloat. The nurse called the consultant to come and have a little look. After observing my stomach, the consultant spoke to my mum and told her that due to the new liver size my stomach had been squashed. Therefore, the liquid feed I was being given through my NG (naso-gatric) tube wasn’t being absorbed into my stomach. Therefore, the consultant suggested I have an NG tube inserted into the duodenum (the first part of the small intestine). This would ensure that the liquid feed would go directly into the duodenum and provide me with appropriate calories and nourishment. 

Later that afternoon a nurse came to take me to the X-ray department. A doctor was waiting insert the NG tube. I was wheeled into the X-ray department and told to stand. The doctor said he would insert the NG tube and monitor the insertion on the X-ray screen. I was told to stay completely still so that it could be inserted into the correct area. My mum kept me distracted while the doctor inserted the tube. 

This was a totally new experience for me because the last time I had an NG tube inserted; I was unconscious during my liver transplant. I didn’t know what it felt like. However, this time I was awake; it was a very strange sensation. The doctor told me to keep breathing deeply and to try to keep nice and still. But it was a very difficult thing to do especially when somebody is pushing something into your nose, and it is reaching down into your stomach! The process went like this for me; first, the doctor inserted an NG tube into my nose. It felt tingly and made me feel sickly, that’s why mum kept me distracted! The tube goes through one nostril and travels all the way down to the stomach so…. yeah! 

After what seemed like an eternity. It was over thankfully. I was able to sit down and relax. I was waiting for the doctor to remove the other NG tube that was already in my left nostril. However, he told me that I had to keep both tubes in my nose. OH, I was quite horrified at that! It was difficult to breathe with the two tubes in both of my nostrils. But then I resigned myself to the idea as I had no choice but to follow the instructions. So, I developed a new way of breathing and that was just breathing through my mouth all the time!  My voice became quite squeaky. This made my mum giggle whenever I spoke, and she started to call me Squeaky! 

Gradually my stomach and duodenum started to absorb the milk feed. I started to gain a little bit of weight every day. I was continuously frustrated about being confined in the hospital. I cherished the idea of being outside, breathing fresh air. To be able to play in a park, kick a ball. However, I could see that it wasn’t going to be happening very soon. At times I would get very annoyed and become quite cross especially with my mum and sometimes with my dad. 

 We developed a routine within the hospital. Mum would stay with me most of the day from mornings when the consultants would come around until late in the evening. Later in the afternoon Dad would join us and then we would spend the afternoon and evening together. At night-time mum would go to stay at the hotel. I would sit with my dad, and we would watch programs on the iPad. Sometimes dad and I would chat about things and eventually I would fall asleep holding my dad’s hand. This was our daily routine. In a way, we would try to find as much comfort in each other’s company. But at times, it was very frustrating for me not to be able to leave the hospital.  

On one of the days, dad came in and gave me a box to open. It was a present. I became a little excited and started to open it. I started taking the items out, of the box, they were the characters from the Simpsons family. I took out Marge and Marge fell over because obviously she has a very large blue head.  When she fell over, I started to giggle then I laughed out loud! Mum stopped in her tracks. She looked at me and said. “After so many weeks this is the first time I’ve heard you laugh. It’s such a lovely sound”. And then she gave me a big cuddle and kiss. I was astonished; I hadn’t realized that I had stopped laughing, or smiling. I was just so annoyed and frustrated all the time! 

Dad passed me another bag. It contained Kevin from Despicable Me. I was overjoyed with this gift. Kevin was one of my favorite minion characters. He was a very practical toy, I used to rest my arm on Kevin, so my arm did not weigh down on my liver area. Kevin became my constant companion in hospital!  

As the days passed in the hospital. I started to gain weight; this pleased the doctors. So, it was decided I was to have one NG tube removed! The one that reached into the duodenum was removed as my stomach could absorb the liquid feed now. The nurse asked me to blow bubbles into a glass and she quickly pulled out the tube! That felt so good as I was able to breathe through one nostril again. 

 I asked one of the doctors when I would be able to leave Ward 8. He chuckled and said to me,” You need to become stronger, before escaping!” I was still very insistent and asked if I could go out of Ward 8, but still be in the hospital. Luckily he very kindly allowed me to do this. He asked me where I was going to go and I replied that I wanted to go to the hospital shop downstairs to pick up a few magazines, and some snacks. The doctor started to laugh and said enjoy your trip! I had to go in the wheelchair because I was still not strong enough to walk very far unaided. I was overjoyed to be able to escape from Ward 8 for even 15-20 minutes. 

One of the physiotherapists used to come every day to take me for some exercises. I used to go in a wheelchair. My physiotherapy involved many exercises and rolling on a big ball. I found this very uncomfortable to begin with, it used to hurt my new liver area. But I continued the physiotherapy daily. Bit by bit I started to feel a little bit stronger. Then one day I surprised my parents by coming back, pushing the wheelchair instead of sitting and being pushed. This was a remarkable day for me, and my parents were overjoyed with my progress. 

In the evenings. I still had to use bubble therapy (blowing bubbles into a straw). This was to help move some fluid which was trapped in between the gap of my new liver and my lungs. I was told that the fluid would only move if I exercised and if I continued with the bubble therapy. The breathing exercises would entail me wearing an oxygen mask. This would open my airways and improve my breathing. I used to use a nebulizer to help me breathe in the early days after my transplant.  The mask and nebulizer made me feel like a superhero! It felt cool when I would wear it because I would imagine I was Iron Man from the Avengers or Scorpion from Mortal Kombat. I had to wear the mask for 10 minutes during the daytime and another 10 minutes before bedtime. After all the exercises my appetite started to increase. 

The catering staff came around and gave me a menu, so I was able to select my meals. This was quite a novel idea, there was a lot of choice available in the form of fruit, soups, sandwiches, hot meals and yogurts, etc. So, I made my food selection daily. I chose tomato soup as my starter everyday as it was easy for me to eat. I wouldn’t really eat that much but the doctor told me ‘If you would like to leave the hospital you need to finish your food so you can become healthy and strong!’ So I took this advice on board and thankfully I was eventually moving closer and closer to that door. 

One day my favorite nurse came and asked me if I wanted my hair washed. I thought, that’s an excellent idea! I couldn’t remember being washed or given a shower since I arrived in hospital! But how would it get washed? My nurse told me not to worry, that she would sort something out for me. So, she bought a silver foiled cap and informed me it contained shampoo and conditioner. I didn’t need to go into the bathroom, so she only needed to put the cap on my head to wash my hair. It would cleanse my hair, and I would feel refreshed. I was very enthusiastic about trying out this new shampoo / conditioner, so I agreed, and we tried it. However, I don’t think we were prepared for the results once she removed the cap!  My mum started to brush my hair and all of a sudden, we realised my hair colour had changed. It had always been black before. But after the transplant, somehow my hair color became brown! Also, my hair was wavy but now it was very straight and shiny. We were startled at the dramatic change. So, as well as a new liver, I got a new hair colour and a new hairstyle! 

In Ward 8, there was a hospital teacher who would help the children with their learning. The lady used give out sheets and books for the children to practice math’s and English. The teacher would spend some time with each child in the hospital. Then my time eventually came and I’m going to be completely honest with you, it was NOT my cup of tea. I despised every time she came over, the reason being that she would want me to work or learn. I never liked to learn since I was a child. She was a nice person I just didn’t like to learn; you must know what that feels like. 

 So, when she came over, I would either: 

1. Dodge as she was approaching, or make an excuse to go the toilet  

1. Completely ignore and blank her, or  

1.  I would tell her I do not want to work! I didn’t care back then as I thought it was irrelevant and not of high importance to me. 

Whenever I needed to move anywhere, I would be in a wheelchair as my body was very weak, so it made moving quite difficult! If I wanted to stand up and walk there was always a machine that had stickers attached to me so wherever I went I had to take the machine with me! I used to go for ultrasounds and X ray scans to check how my liver was progressing and to check my health.  

The day my family came to visit me in hospital was a very exciting one. I was overjoyed to see my cousins. I tried to get out of bed to greet them but realized that I was connected to many machines and I just had to stay put!  

I got so many presents and cards from my family members. My teacher from school even sent me a Lego Batman t-shirt in the post! That was such a sweet gesture from my favourite teacher. 

As I was getting stronger, the doctors allowed me permission to leave the hospital for an afternoon. So mum and I went to Ronald McDonald house where my dad used to stay. There was a games room, with a foosball table. I wanted to play but wasn’t sure if I could walk around for long. So, I asked my dad if we could go and play a game of football. And then he was like, yeah, sure. I had a fabulous time, I managed to walk around the table, it was the first time I played and I won! 

During my stay at the hospital Radio Lollipop came to visit.  They came and chatted with me about general things. There were many games and activities to participate in for all the children on the ward.  There were many colourful beads and white cubes with letters written on. So, I decided to make a bracelet with my name on. 

Another one of my memorable days was when we were allowed to make cakes at the hospital. We distributed the cakes amongst all the staff on Ward 8. When the consultants were making their ward round in the morning, I snuck in amongst other doctors and followed them on their ward round. Mum came looking for me and then took me back to my hospital bed. I was trying very hard to escape one way or another! 

Finally, the day came and I was told “You can go home now, you are well enough to leave the hospital “. I was ecstatic, after six weeks, I could finally leave the hospital and go home. Freedom! 

My parents packed all my belongings.   We thanked the staff, left them a few gifts and said our goodbyes. To end on a high note, I walked out of the hospital feeling like a king and the happiest man in the world. I can’t thank God enough that he has granted me a second chance to live. 

Since then, Kate has supported me in various ways, from providing information for Hali’s school, helping me apply for benefits, providing me with supporting letters for various reasons, or just listening to me. Sometimes it’s a phone or a video call but even if I just email her with a question, I know she’ll come back to me. 

All of this has had a huge impact on how I cope with Hali’s condition. I have a better understanding of how to care for her, support my other children and also to give myself some grace aswell. 

All parents in my situation will know that life after transplant isn’t always plain sailing. In March 2022, Halima had major surgery with some complications. She became very unwell and took time to recover. Because of this, she has to take some additional medication which has had some negative side effects. However, she is now doing well, thriving in school and is just a happy little girl and a lovely little character. 

After coming through that rough time, I took her to Disneyland Paris for her seventh birthday this year. She’s wanted to go since she was five, so it felt really special. 

I would say to any parent in my situation there is great benefit in contacting CLDF. There is so much information and support directly relevant to your circumstances and sometimes it just helps to speak to someone who has an understanding of what you might be going through.  

If you think you might benefit from our support, please get in touch here.   

Of course, because I was so young, I have no memory of any of this and when I was little, I never really thought about it or wondered why I had to go to appointments and other children didn’t. In fact, the first time I realised I was little bit different was when my friends began to get piercings, and I wasn’t allowed. This might sound stupid but when you’re a child, things like that bother you.  

 As I got a bit older, I realised I have this huge scar that no-one else does. I felt as though I couldn’t wear certain tops that might slightly show it or bikinis on holiday etc, as I just felt things didn’t sit right on me. The scar itself didn’t actually bother me or make me feel much different – it was just the thought of showing it off. Physically, my transplant never had a negative effect on me. I was always very fit, good at running when I was at school, and I did dancing for years as well as several other sports.  

When I was younger, I worried a lot about being left out when I got older because I wouldn’t be allowed to drink alcohol, have tattoos or piercings but when that time came, everything became a lot more relaxed as things were going well for me. I was allowed alcohol in moderation, and I was allowed tattoos and piercings, as long as I was extra careful. So that really stopped me from feeling isolated.   

 I first heard about CLDF when my mam ran the Great North Run for them when I was younger. I know she had received information and support from them when I was little. I remember meeting the team that day and standing with them when my mam was running. I also had contact with another girl my age who had a liver condition although we lost that as we grew up. However, as an adult I’ve been able to speak to parents of children who have liver disease and it’s lovely to reassure them with my story.  

 My health now is brilliant and I’m only on a low dose of medication thankfully. I am currently studying health care, and my goal is to become a paediatric nurse. My experiences have driven me to want to help and inspire young children the way nurses did for me when I was when I was little. 

My partner, Nathan and I have two healthy little boys – my youngest has just turned one. One of my elder son’s middle names is Lee, after my liver donor. 

And as I live over an hour away from Leeds, I get the option to do a telephone appointment now which is much easier as I now have the children to consider.  

To younger children who live with liver disease or post liver transplant I’d say never worry about your future because things change so much! The life I expected to have when I was older is completely different to the life I live now. I’m actually not much different to other people. So don’t waste energy worrying about it!  

When we look at our son now, there is no doubt that organ donation is a fabulous gift to those in need and we can’t thank Rosco’s donor and their family enough for giving him a second chance at life. 

The Kasai surgery was initially a success, and I returned home to start life with my baby girl. Now I look back and of course I know so much more about childhood liver disease but as a young first– time mum I didn’t know that a baby with dark urine and pale stools was not normal, so I’m forever grateful to my health visitor. 

As time went on, I began to worry about the future. Lily would miss a lot of school due to illness, fatigue, hospital appointments etc and I knew this wasn’t right. Although we knew a transplant was a strong possibility one day, the hospital told me that every child is different and that some even go into adulthood before needing one. So that gave me a lot of hope for her future.  

Around 2016, however, Lily started to get more fatigued, itchy, missed more and more school, and watching her become more ill was just a horrible experience which I wouldn’t wish on anyone .  

 It was on March 28th 2018 that Lily was placed on the waiting list for a liver transplant. By this time, I had two other children with medical needs and my health wasn’t the best  but we stuck together and got though it with the support of each other and our amazing family. When you have a child with a medical condition you need a good support network, so friends, family and in my case, Children’s Liver Disease Foundation are all vital.  

Lily waited two and a half years for her transplant. During that time, every time my phone rang my heart stopped and I felt sick, thinking this could be the call. Unfortunately, we had three calls where we got to Kings to be told the liver was unsuitable. I was getting married in the June of 2019 and was thinking  ‘what happens if we get the call on our wedding day or the night before?’  In the end I made the decision to ask if she could be removed from the list for two days so Lily could be there for my wedding.  She was my flower girl and there was no way I was getting married without my daughter by my side. 

The following year, Covid hit, and my nerves went through the roof. I was so over- protective of all three of my children. Then one Tuesday morning in July 2020 we got the call for a fourth time. We gathered our bags, I hugged my husband and my two boys so tight and cried as I wasn’t sure what was going to happen. 

We got to Kings, had all the tests done and early next morning the doctors came round. My heart was beating so fast and I felt sick to the stomach. I held Lily’s hand so tight and the doctors told us yes  – this time the liver was a match.  I felt all kinds of emotions and just cried. We went straight to theatre and got her all prepared for surgery, I stayed for as long as I could. As they were putting her to sleep, I was fighting back the tears and trying to be strong for both of us, but I just couldn’t anymore and started to cry. Lily squeezed my hand and said “Mum don’t leave me, I’m scared.” I said to her “ I love you so much, you got this”  and that I was so sorry .  

 Six hours later she was out and in recovery and doctors confirmed it had gone well. The road ahead seemed long but it was so good to know the worst part was over, and we could start planning things as a family. Lily’s recovery went well, we were in Kings for just over two weeks. During that time, we made a lovely friendship for life with another mum and her daughter. We bonded over our girls having transplants on the same day and being there to support each other as we had no family around due to all the Covid restrictions.  

Four years later and Lily is still stable.  She has bloods done every three to six months and check- ups every six months. As any parent who has been through this knows, nothing is ever straightforward. Like many teenagers she’s had her struggles with anxiety and other unrelated health problems. 

But I’m so grateful for the chance her transplant has given her. I would advise anyone in our situation to take all the support you can from family and friends and CLDF and I hope that our story is of help to other families who receive this diagnosis.