Charlie had his Kasai on December 8th, all went well, and we flew back home to Northern Ireland a week later. I told myself that the operation would have cleared up all the problems, but I was so wrong. Charlie was in hospital every month with repeat episodes of cholangitis and an enlarged spleen. He underwent a transplant assessment at the end of February last year and was listed for a liver transplant on 8th March – a year ago now. 

Every day we pray that we get that call. Charlie continues to be in and out of hospital with cholangitis and had to have a central line put in as his vein access began to give trouble because of the cannulas for IV antibiotics. Despite this he is such a happy little boy, he loves to dance and play with his big sister Sophia and big brother Lewis. 

We are so grateful to the Blossom Ward at Craigavon Hospital. Charlie has such a good relationship with the nurses and doctors there. We also can’t thank Birmingham Children’s Hospital Ward 8 enough. They are absolutely brilliant at what they do and how quickly they act with treatment plans for Charlie. We’re very fortunate that Charlie’s consultant, Dr Gupte, flies over to Belfast for his clinic every few months which is a great help for us as it means we don’t have to leave Belfast to travel. He is an amazing man and we’re so thankful Charlie is under his care.  

Having a child with liver disease certainly affects the whole family and in the early days I did make the mistake of trying to deal with everything myself. Because the condition is rare, you do feel like you’re the only ones going through it. But with two other children this isn’t easy. My daughter is only five and currently just accepts that Charlie is sick and sometimes needs to go to hospital. But for my son, who has autism, the changes to his routine while Charlie is in hospital are much more difficult to cope with. I would certainly be lost without my close family support! 

Now, through the stories I’ve read on this website, I realise that there are many other families out there going through the same thing. This has been a comfort to me, and I’ve made some really good friends along the way! I talk to Niamh, who has also shared her story about her daughter, Croia, (pictured above with Charlie) and she has helped me deal with things a lot better.  

So I hope that sharing our story helps others in our situation and we remain hopeful that Charlie gets his new liver this year.  

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. 

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.         

After a few ups and downs at the start, he is now a very healthy boy who enjoys life. Cathan will turn 10 on Boxing Day this year and we shall be forever grateful to his donor and their family. 

I have had no liver issues since and have lived a healthy 30 years so far. As I was growing up, my family and I received a lot of support from Children’s Liver Disease Foundation. My mum and grandparents attended the conferences many times, and me and my brother Ryan used to go to the children’s activities which were put on during this event. I know that my family found the support–  whether it was through literature, networking or  going to conferences – to be outstanding and the charity has always meant a lot to us. Fourteen years ago my brother, Ryan, completed a tandem skydive to raise funds for CLDF and to promote organ donor registration and I hope that by sharing my story I can help other families who may be wondering what the future holds.  

I work as a swimming teacher which I find so rewarding and always tell the children and adults about the British Transplant Games which I compete in every year to promote the Games themselves and the wonderful gift which is organ donation.