We’re really pleased to share Robert’s story. As far as we know, he is the longest-surviving childhood liver transplant patient in the UK, having received his second transplant in September 1989. If anyone knows differently, we’d genuinely love to hear from you. 

 

I was born in March 1979, and from the very beginning, something wasn’t quite right. My mum says the midwife had concerns but couldn’t pinpoint the problem. I fed reasonably well, but I was unsettled and clearly uncomfortable. I had a cracked shoulder bone from the birth, but it did not explain my discomfort. 

At around four weeks old, things got worse. I stopped feeding, became limp, and seemed to lose energy. A locum GP dismissed my mum as being fussy and overly worried, but she trusted her instincts and sought a second opinion. She knew something was wrong—and she was right. 

The usual family GP admitted me immediately to Southampton General Hospital. The doctors determined I was bleeding internally. What followed was chaos, confusion, and long periods of waiting. I was given a blood transfusion, but a large red bruise developed on my side, which mum worried that the doctors would believe was due to potential abuse, but this was never implied.  My condition became so critical that it was feared I would not survive the night, and my mum was asked if she would like to have me baptised, to which she answered, “he has done nothing wrong”. 

I was given a Vitamin K injection (now normal practice for newborns), and somehow, I pulled through. 

Living without answers 

After that, life became a cycle of hospital visits, tests, and biopsies. Those early biopsies were brutal, performed without the guidance of ultrasound, a core needle aimed between the ribs to hopefully gain a sample of liver tissue. Even now, the feeling still haunts me. 

Our consultant, Dr Chris Rolles, was approachable and supportive over the next 18 months as we saw numerous doctors to try and find a diagnosis. Eventually, after months of uncertainty, Professor Norman gave the diagnosis alpha-1 antitrypsin deficiency and delivered the news of a limited life expectancy, unlikely past the age of nine.  

I was too young to understand, but for my parents, it was devastating news. 

A childhood lived fully 

Despite everything, my family made a conscious decision: we were going to live as normally as possible. 

Staying within the reaches of the NHS, from rock climbing in Dorset, sailing in Cornwall, to walking in the Lake District, we spent as much time outdoors as we could. One memorable sailing trip to the Isle of Wight, was interrupted by a severe internal bleed. An emergency detour in the tender to Seaview, a taxi to St Marys Hospital, Newport, and the bleed was dealt with by cauterization. There were hospital visits, scares, and the occasional emergencies—but life carried on. 

Now as a parent myself, looking back, I realise how much stress my parents must have been under. Every bump, every fall, every illness came with an extra layer of fear for them. But as a child, I just got on with it. 

When things got real 

In 1988, by the time I was eight, I was getting noticeably weaker. I had jaundice, struggled to eat, and had very little energy. I was also dealing with the normal challenges of childhood—including a bit of bullying, thanks to the bloating and jaundice—which I learned to handle in my own way. 

It was proposed that we travel to Addenbrookes Hospital, Cambridge, to meet Sir Roy Calne. Sir Roy was a leading surgeon specialising in organ transplants, also sidelining as a very proficient artist, he later painted me whilst in the ICU. Sir Roy introduced us (including our new golden retriever puppy Suki) to the transplant team, in the premise that it may, one day, be a possible route of treatment. We continued with our cycle of life, school and hospital visits, but my health was notably declining. 

Then, in early 1989, everything changed. Late one evening in February, mum received a phone call from Addenbrookes out of the blue: there was a liver available for transplant, and we needed to get to Cambridge the next morning for the major operation.  

Mum was doing her PGCE at Southampton, childcare needed to be arranged for Victoria and William, and we hadn’t even realised I was on the list being considered for a transplant, a life-threatening operation – panic logistics ensued, and by the next day, with my dad at my side, I underwent my first surgery.  

The operation took around seven hours. For my parents, the waiting must have felt endless. They opted to take a 12-mile walk back to my Grandparent’s house to distract themselves. 

 

Chloe has kindly shared her experience with her son, Max, which she hopes will help other families in her situation. 

Max, known as our Max in a Million, has a condition called portal cavernoma, which has led to portal hypertension. We wanted to share his story from diagnosis to now, in the hope that it might provide awareness or understanding for other families facing similar challenges. 

Max was born extremely prematurely at just over 23 weeks gestation and had to spend six months in NICU.  During this time, he faced multiple rounds of sepsis and required extensive ventilator support for eight to nine weeks. His tiny body relied entirely on umbilical cord cannulas, Hickman lines, and numerous other lines for blood transfusions, platelets, TPN, and fluids, crucial to sustain him through these fragile early stages. 

Looking back, Max had very visible veins across his chest, and we were told that his liver was scarred, likely a result of prolonged TPN, along with high bilirubin levels in his blood tests. When he was discharged after around six months, he went home with oxygen and regular follow-ups for prematurity-related issues, but we were completely unaware of the liver complications that lay ahead and had received no diagnosis. 

 

 

Big Yellow Friday is all about community fundraising so as four-year-old Nellie’s mom, auntie and nanny are all regulars at their local Virgin Active, it was only natural to ask if the gym would like to get involved. 

“We were delighted that Virgin were happy to support us,” says Nellie’s Auntie Sophie. “And we decided to ensure there was something for everyone. So, we had a coffee morning, a raffle for a Big Yellow hamper, and a Guess the Name of the Duck competition. 

“As we wanted to maximise fundraising and were conscious that many people do not carry cash with them, we had a poster with a QR code which people could just scan with their phones to donate if they preferred. 

“The day certainly surpassed our expectations, and we had a steady stream of people taking part in everything. It certainly helps that we are familiar faces at the gym. People recognised Nellie and were genuinely interested in how the charity was of benefit to us as a family.  

“We also had great support from the team at Virgin Active who really got behind the idea. Our amazing Experience Consultant Dane was rallying his own troops as well as telling club members about the bake sale. It meant a great deal to us and undoubtedly contributed to the success of the event. We had set ourselves a target of £500 and are delighted to have completely smashed that with our total now standing at £1920!” 

The team at Virgin were equally delighted with the fundraiser: “I will say that this was the best event I have been to in one of our clubs since starting my role with VA two years ago!” said Regional Exercise Experience Manager, Matt Gardner. 

The take home message from Sophie is clear: “If you’re thinking of approaching your local gym or sports club about a fundraiser, just do it! You’ll be so glad you did and it can prove such a positive experience.  We’re not only proud of the money we raised but of the fact that there are people who had no idea about liver disease in children who now know a little bit more, and all because Virgin Active joined in Big Yellow Friday!” 

 

 

Eleven-year-old Cathan was the proud recipient of the School Values Cup at St Mary’s Primary earlier this month. 

The cup is awarded by the school’s Principal to the student who demonstrates the school’s values the most and Cathan’s mum, Joanne, explains why he was chosen. 

“Our school values are: 

Togetherness – Cathan always shows this through playing and including everyone 

Christlike- Cathan treats everyone the way Jesus would want to 

Friendship- Cathan is friends with everyone 

Nurturing – Cathan may be in the top class but he is so good with the younger kids 

Valued – Cathan values everyone, staff and kids alike 

⁠Respect- Cathan has great respect for everyone in his class, his teacher and his 1-2-1 

⁠Wisdom- Cathan shows this all the time.” 

 

The award means a lot to Cathan’s family as it demonstrates how he is thriving at school, five years after his liver transplant. 

“The principal also added that Cathan could add a few more values to that list, values of determination, grit and hard work along with resilience,” says Joanne. “He called Cathan a “great role model for our school” which he was over the moon to hear. We’re just so proud to see him enjoying school, playing soccer and  living his best life.” 

 

We are delighted to report that for the first time in over a decade the Department for Education has published updated draft guidance on supporting children and young people with medical conditions.  Our Children and Families Service has been closely involved throughout the review process, ensuring the voices and experiences of young people with liver disease are represented. 

 

How the new guidance will affect children with liver disease 

 

• The guidance has now made clear that any child with a health condition, including liver disease, that needs supportive arrangements should have an Individual Healthcare Plan. 

• The strengthened guidance now includes a specific section on health conditions such as childhood liver disease, which reinforces that IHPs are essential for children and young people with childhood liver disease in education.  

• The draft guidance includes more practical “how to” detail, and cross references safeguarding and equality duties.  

• Education settings are now expected to publish their medical conditions policy on their website. This helps young people, parents and staff have a clear understanding of how support is managed.  

• Previously only covering schools, the guidance now expands to colleges and early years settings for the first time.  

• The guidance also signposts education professionals to the information and support which our Children and Families Service provides.   

 

 

Head of Children and Families Services, Michelle Wilkins, says: “So much of the support we provide is education related, whether it’s concerns before a child starts school or nursery or issues concerning attendance once they are there. In our recent survey of families and young people, 48% of respondents felt that having a childhood liver condition had a negative effect on educational attainment.  

“The new guidance is a welcome step towards making sure children with liver disease are safe and included in education. Because childhood liver disease affects every young person differently, we know Individual Healthcare Plans are vital in helping staff understand their needs and respond appropriately.  So we’re pleased to see more clarity in the statutory guidance around which children should have Individual Healthcare Plans, recognising how essential they are.  

“We welcome the opportunity we’ve had to feed into the draft guidance, and we’re pleased to see it broadened to include early years settings and colleges.  

“We hope this review continues to move us closer to a future where all education settings consistently recognise and support long-term health conditions, so no child is overlooked due to a chronic health condition.” 

 

The new guidelines are open for consultation until May 1st and parents can make their views known here    Policy papers and consultations – GOV.UK     

 

We have a useful guide available for anyone who would like help completing the consultation. Please email families@childliverdisease.org for your copy. 

 

 

 

Twenty years ago, I had my liver transplant, but my story began when I was just 10 weeks old.  

My parents first took me to the doctor because I had jaundice, was constantly vomiting and wasn’t putting on weight. I was referred to hospital, where I was diagnosed with alpha-1 antitrypsin deficiency, a genetic condition in which the body doesn’t produce enough of the alpha-1 protein that protects the liver from damage.  

For a long time after my diagnosis, my condition was relatively stable and didn’t hugely affect my day-to-day life. But everything changed when I became seriously unwell with spontaneous bacterial peritonitis at eight years old, which resulted in me being put on the transplant waiting list. There were three hospital trips when the donor wasn’t a match, and on the fourth call we finally got the news we had been hoping for. In the end, I was on the waiting list for 12 months and had my transplant when I was nine.  

I spent three weeks in hospital afterwards. Because I was young, I don’t remember much about the experience. I do remember some painful injections and feeling upset at the size of my scar at first, but over time it became part of me, and now I hardly notice it. Other than that, most of the memories I have from that time are positive and often funny. I remember the night my dad spun me around the ward in my wheelchair late at night because I was really craving a cheese string. News spread among the nurses during their handover the next morning, and we were the talk of the ward! We also spent a lot of time playing Boggle, a game I loved, and even now, whenever I see it, it reminds me of my time in hospital.  

When I was discharged from hospital and back home, I was off school for three months, but they sent my work home so I could keep up. My classmates also sent me handwritten letters while I was off, which meant a lot to me. I still have them and read them from time to time. For the rest of my education, my liver condition didn’t have a major impact. At university, I had to manage my medication and health on my own for the first time, which was a new challenge, but I grew into it. I wrote a blog about that experience here: 

 

Staff and customers of a Leyland hair salon have raised £290 to support children and young people with liver disease. The team at Hair Central joined in Big Yellow Friday, the national fundraising and awareness day for childhood liver disease, organised by Children’s Liver Disease Foundation (now merged with the British Liver Trust). 

Inspired by salon manager, Sophie Woodhouse, who was born with the rare liver disease, biliary atresia, the team organised a cake sale which ran throughout March 13 and 14 and proved extremely popular! 

“As a child I always understood that I had a poorly liver, says Sophie, 25. “And I feel fortunate that apart from regular hospital appointments and blood tests, I had a pretty normal childhood. The only time I ever felt different was the “chore” of taking my meds every morning and night, especially at a sleep over.  

“But while I may have been too young to worry about it, it was certainly not the case for my family! I know my dad, Andrew, got a lot of information and support from Children’s Liver Disease Foundation when I was young. So this charity will always be important to me. 

“For the past 20 years my health has fortunately been stable. I still have three-monthly blood tests at our local hospital and an annual appointment with my liver consultant in Birmingham. I am conscious that having a weak immune system and working with the public, means I have to be extra careful, but I feel so lucky to be doing a job that I love. It’s a great feeling to be doing something so creative, making people feel amazing when they leave the salon and I’m now looking into teaching hairdressing.  

“Now felt like a good time to give something back and also to raise awareness of a smaller charity that many people don’t know about. I was so pleased to see that my colleagues were enthusiastic to join in Big YelIow Friday too. We had a great selection of home baking, our customers were very generous, and I feel really proud to have raised so much for a charity so close to my heart.” 

Michelle Wilkins, Head of Children and Families Services at British Liver Trust, commented: “We’ve supported Sophie and her family for many years now and it’s wonderful to see that she is pursuing a career which she loves – what an inspiration to other young people with liver disease. It’s brilliant that her colleagues and customers were so supportive of her fundraising and she should be proud to know that her efforts are helping children and families around the UK affected by childhood liver disease.”  

  

You can support Big Yellow Friday by going to Big Yellow Friday | Children’s Liver Disease Foundation