A setback—and another chance 

Then began the recovery. I was in hospital for around six weeks, and mum and dad alternated staying with me, and being at home with my brother and sister, trying to maintain as normal a life as possible.   

After I was discharged, I swelled up with ascites and again became jaundice. There followed six months of constant check-ups and occasional panics. During the summer, we took a camping trip to the Lake District. I had such a high temperature, I ran round the campsite at night hallucinating (and William was sick all over Victoria’s bed) which resulted in a mad dash to Cambridge. After that episode calmed down, we planned a sailing trip to the Channel Islands. I struggled to walk far, but was not seasick, and coped ok. However, on our return to Addenbrookes in early September, the dreaded news was given: the transplant had failed and a second would be necessary.  

A week later, we went through it again, with another week in PICU and five weeks or so on the Children’s ward. Happily, this time, it was a success. 

Growing up after transplant 

After recovering, I threw myself into life. 

I competed in the Transplant Games, particularly in swimming where I excelled, which gave me a real sense of confidence and normality. But as I got older, I wanted to move beyond being “the transplant kid” and just be like everyone else. 

I’ve always been more adventurous than sporty—climbing, sailing, surfing. I didn’t want my transplant to define what I could or couldn’t do. At one point, I even played rugby and asked to be hooker in the middle of the scrum, despite being told by doctors “no contact sports”. In fact, this has been a common theme throughout my life, the doctors more nervous of my pursuits than I am. I see the holistic advantages of a healthy full life, outweighing the risks of succumbing to a more sedentary approach. 

School wasn’t easy. Dyslexia and missed lessons made things difficult, but I found my strengths elsewhere. At school, I pushed myself physically and mentally, completing endurance challenges that tested me to my limits. 

Finding My Path 

In my late teens and early twenties, I worked in outdoor education, teaching climbing and canoeing. Later, I became a qualified surfing and windsurfing instructor, working around the world—from the UK and Ireland to Greece, Turkey, and spent time in the Canary Islands and Hawaii. 

Eventually, I realised I needed a more stable career. So, at 21, I went back to education, completed my GCSEs, and went on to university. That decision changed the course of my life and today, I work in global marine transport, a career I’m proud of. 

In 2009, I married my wife Emma, we now have two wonderful daughters. Family life has always been incredibly important to me—especially given everything that came before. 

Ongoing challenges 

In 2011, shortly after the birth of my first daughter, I was told I had entered “chronic rejection”. Hearing that was difficult, especially just after becoming a dad for the first time. I travelled for work to Singapore with a heavy heart. However, with some amendments to my medicine, nothing significantly changed until 2020, when signs of internal bleeding led me to have an investigative endoscopy. I was recalled the following day for banding of ruptured varices, just in time for the Covid pandemic to hit and for me to receive my latest label “vulnerable” and get my shopping slot with the elderly and receive a Government supply box (just as the supermarket delivery had been) which we duly donated to the food shelter.   

In 2021 we moved from Winchester to The Witterings, to be closer to the sea and for the girls to enjoy a childhood on the beach, just as I had done. Six months in, after a dinner party with friends, during the night I suffered a massive internal bleed, vomiting blood covering the bathroom floor. We phoned for an ambulance, and I had the next few days in hospital feeling very weak and was once again jaundiced and frail. That was my last ever glass of wine and I have been without alcohol ever since.  

Since then, there have been ups and downs—internal bleeding, surprise hospital stays, ascites, biopsies, ultrasounds, varices, etc. There have even been discussions about a possible third transplant. For now, though, things are stable. 

Where I am now 

As a family we sail, surf, windsurf, hike, climb and more. We are incredibly lucky. I’ve had to adapt how I stay fit, but I still do the things I love. Being active and enjoying the outdoors has always been a big part of who I am. 

More than anything, I try to focus on living fully. 

What I’ve learned 

If there’s any advice, I’d give to anyone going through something similar, it’s this: 

What you go through doesn’t define you. Yes, it changes you—but it doesn’t have to limit you. You can still build a life, follow your passions, and find your own path forward. 

You don’t get to choose the cards you’re dealt. But you do get to choose how you play them, and importantly, who you play them with. 

When he was around eight months old, Max underwent surgery for a hernia repair and as doctors were still unaware of his underlying condition, he was given ibuprofen during recovery. After being discharged home, Max wouldn’t settle, and we knew something wasn’t right, so we rushed him back to our local hospital. He had his first emergency bleed on the ward, these symptoms were completely new to our local hospital, and he was transferred to the high-dependency children’s ward at a Tier 3 hospital for specialist care. An ultrasound revealed a blockage in his portal vein.  Following a recovery period, he was referred to King’s College Hospital. 

It was at King’s that Max’s diagnosis was confirmed: he had portal hypertension, caused by a blockage in his portal vein, known as a portal cavernoma. This rare complication is suspected to have resulted from the lifesaving umbilical cord cannula he had as a premmie baby, which unfortunately caused a thrombosis (blood clot) in the portal vein.

Portal Hypertension occurs when there is increased pressure in the portal vein, which carries blood from the intestines to the liver. This can lead to enlarged veins in the oesophagus and stomach (oesophageal varices), which are prone to life-threatening bleeding.  

What followed for us was a relentless cycle. Max faced repeated emergency bleeds, sometimes just three weeks apart, requiring ambulance trips to King’s College Hospital for sclerotherapy and banding (OGD). The instability of his oesophageal varices, graded at grade 3, and the constant fear of the next bleed was overwhelming. 

Despite the challenges, the teams at King’s have been incredible. Max’s treatment now includes monthly injections, daily medications, and regular sclerotherapy and banding procedures, which have helped his condition significantly. He is now four years old and attends routine procedures every three to six months, giving us hope and glimpses of normal life amid a challenging medical journey.   

I believe it was during our second emergency bleed that we were admitted to Rays of Sunshine Ward, where the clinical lead nurses provided me with an information brochure about portal hypertension and the support which CLDF offers. So I subsequently made contact with Kate who has been extremely reassuring and mentioned that once Max has a school placement in place, she will be able to help advise the school and support them in understanding his condition. We also received one of your education packs, which has been very helpful. 

Max recently reached a huge milestone by coming off home oxygen. He loves spending time with his big sister Cassie (also born prematurely but thankfully in full health) dancing or cuddling up on the sofa to watch their favourite TV programmes. 

Starting school will be the next milestone – something which we would love to happen but are also nervous about at the same time.  Max does have an EHCP in place as, in addition to his liver condition, he is autistic and has chronic lung disease as a result of being premature.   

Sharing Max’s story is our way of raising awareness about portal hypertension in children, and the challenges families face with rare liver complications. We hope that by sharing our experiences, other families can find reassurance that they are not alone, and that even in the most difficult circumstances, there is hope. 

I was fortunate to have a relatively smooth recovery with few complications. I’ve been able to take part in the Transplant Games, attend a ski camp in Anzère called Tackers, and even have a wish granted by Make-A-Wish to meet my then-favourite boy band, JLS.  

In many ways, my transplant gave me more opportunities than it took from me. I am very aware that I have been incredibly lucky and that many people face far more complex and challenging journeys. But there are also many things I would never have experienced without my transplant, and I don’t take that for granted.  

Another of those opportunities was volunteering for CLDF for many years. I wrote blogs, was a Hive Ambassador and supported with social media analytics. Through my volunteering, I was kindly gifted a stay with Room to Reward, and my best friend and I enjoyed a weekend in Edinburgh. We had a lovely time, and I was so grateful to have been recognised.  

In January this year, we marked 20 years since my transplant.  

Today, my health is good. I have check-ups every six months, sometimes by phone and sometimes in Leeds, and I still take immunosuppressants daily. They will always be part of my life, but they are such a normal part of my routine that I don’t think twice about taking them.  

I try to look after myself physically and mentally, particularly through walking. My sister and I are about to go on our second walking holiday together. Last year we explored Jersey, and this year we are heading to the Isle of Man. I love being outdoors and surrounded by nature. I also play badminton, have recently started running again and occasionally go to line dancing classes.  

I also work in communications at Young Lives vs Cancer. Although my condition was not cancer, I relate deeply to many of the themes the charity addresses through its work, including navigating childhood illness and the uncertainty it brings for the whole family.  

When I’m not doing that, or any of my other activities, I am usually travelling and spending time with friends. I was also lucky enough to see Taylor Swift on her Eras Tour, which is a highlight of the last few years.  

I didn’t really talk about my transplant much when I was younger, and I still don’t now. Not because I’m ashamed or embarrassed of it, but because it has become such a normal part of my life that I often just forget to mention it. When I do, people often say, “I’ve never met anyone who has had a transplant before.”  

If I could offer one piece of advice to young people at any stage of their journey, it would be this:  

Try to focus on the positives. I know that isn’t always easy, and there will be difficult days, but this chapter is just one part of your story, not the whole story.  

There is life beyond hospital walls, beyond appointments and beyond the hard times. And when you feel ready, say yes to the opportunities that come your way. There are many things I haven’t mentioned that were offered to me and that I now wish I had said yes to. But there is also so much I did say yes to, and so much I have been able to do, that when I reflect on my journey, it is the good moments that stand out the most.  

And I truly believe there can be many of those moments ahead for any of you reading this.  

The news of Sam’s passing was shared with our fellow psychology students at the University of East Anglia early in January and shortly afterwards I received a message from Amy, who knew us both, about the chance to raise some money in Sam’s name. Sam’s family and I had already decided that raising money to support children and young people with liver disease was something we wanted to do this year, so I leapt at the opportunity.  

A small craft fair was being advertised at the university and there was a stall available which we could use to do a bake sale. Amy is the psychology school convenor and so was able to get the word out to the right people to get the bake sale advertised. I was amazed at the response. Not only did plenty of people offer to bake for us but we had so many customers on the day.  Even the people on the stall next door to us donated their takings,  which was so kind. I had hoped that we might raise £200 from this bake sale but our total was £670, which is why we’re planning another one soon! 

Amy then mentioned to me that the School of Psychology usually puts forward a ‘challenge’ to their students each year and we could do one in honour of Sam. Because Sam had passed away just weeks after his 22nd birthday, I came up with the theme of 22, so we would ask people to complete 22km in any way they like in the first 22 days of March. We have opened up the challenge to everyone, not just UEA students and have a good amount of people signed up and dedicated to raising some funds in Sam’s name. 

Our plan is that weather permitting, the challenge will culminate in a Remembrance Walk – a 2.2km walk on March 22nd. Again, this is open to all of Sam’s family and friends and will take place at Eaton Park in Norwich. This was a special place for me and Sam.  We’d have hot chocolate and a fish finger sandwich and play mini golf, or even just take a football to kick about on the grass. It was where we’d go when we needed a break from studying or just some fresh air. I know it was where Sam used to do Parkrun and there are pictures of him running in the park as a child so it feels right that we should do a special event there.  

Eaton Park was a special place for Sam and Poppy.

The events of the next few weeks are just part of what I want to do to honour Sam. I plan to continue fundraising after I graduate (we were due to graduate together this July) and my brother, Ben, will be running the Brighton Marathon for British Liver Trust in April. It’s heartening to think that Sam’s funeral donations, together with what we have raised so far, mean we have already donated £8,200   to a cause which meant a lot to him. That total, together with the amazing support and kindness of fellow students, friends and family in joining in our activities means a great deal to us during a very dark time. Something truly positive will come out of our grief. And I know this is what Sam would have wanted.  

You can support fundraising in memory of  Sam at Sam Wainwright is fundraising for British Liver Trust 

And Ben’s Brighton Marathon fundraising page is https://www.justgiving.com/page/brighton-marathon-in-memory-of-sam-wainwright?utm_medium=FR&utm_source=CL&utm_campaign=020. 

I still feel, however, that the impact of his diagnosis is huge. Neither I nor my husband, Mark, had never heard of biliary atresia before Caius’ diagnosis. In fact, when it was initially being investigated, the consultant told me not to Google it due to the negativity of many outcomes. Once it was confirmed that it was what he had, we looked it up. I found it very scary and still do.  

The effect on the family was instant. Mark was about to start a new job, but had to delay it for a month – there was so much to cope with at home.  I remember when Caius came home from hospital after his Kasai that my other children had to stay with grandparents for a time when because they had a bug and Cai couldn’t risk infection. I suffered from depression after Caius had his Kasai and the consultant referred me to the doctor because she could see I was struggling, not just with worry over Caius but the guilt of leaving my other children to stay by his side.  

Initially it was felt that the Kasai operation had failed and Caius need a transplant quite early and I remember one doctor suggesting that we put him into care so we could be with the other children as he would need to be in hospital for months. I remember my husband crying when this was put to us and he never cries. Obviously, I refused that and fortunately Caius improved once he was on antibiotics.  

He had to see nurses three times a day for medication, they would come to our house to administer it. He had that many blood tests that his veins had collapsed and they had to start using his feet. He used to have a phobia of anyone dressed in blue because of all the nurses he had seen and the association with needles. He would cry uncontrollably. This went on for months and months. We had to feed him special milk through a tube to help him gain weight and I can still recall all the boxes of milk and equipment stored in the extension. 

Fast forward to today and Caius is in Year 8 at middle school; he’ll go to high school in September. Having a liver condition has given him an anxiety about taking part in PE. There are some activities he is unable to do like contact rugby or boxing, but he tries his best to avoid other sports as he has been advised to avoid aggressive physical contact. He knows how seriously other boys take their sport, so he just tends to distance himself and spends a lot of his time with girls for this reason. He finds boys too boisterous and it worries him. It is this anxiety coupled with the knowledge that he will probably need a liver transplant at some unspecified point in the future that he sees a therapist once a week and I know he finds this helpful. 

Although Caius has a lot of interests and loves learning about stuff which interests him – he wants to be an architect one day – he does have difficulty concentrating and can be easily distracted in class. Whether this is connected with his liver condition, I don’t know. The school are fully aware of it, but I’ve never been asked to discuss it or provide further information after completing his initial care plan when he first joined. Even now I’m shocked at how many of his teachers are not even aware of his condition. They certainly don’t understand the mental health implications of it or appreciate the effort he makes to keep close to 100% attendance – this is never recognised. I do appreciate that the school may not have the resources to put in place the kind of support we would ideally like, but I’m sure if he happened to have a chronic health condition which was more widely known, there would be a lot more understanding. 

Outside school, Caius is a normal cheeky teenager. He loves his cats, films, eating pizza, Amy Winehouse, playing video games, badminton and spending time with family and friends – there’s always a houseful here! As the youngest of seven, he can stand up for himself.  I think his siblings forget about his condition most of the time because to look at him, you wouldn’t know there was anything wrong, but I know that if we were to get ill, they would all support him fully. 

As for me, I find Caius’ condition is always in the back of my mind. I try not to dwell on things, but the future worries me. Will he be able to finish school before his transplant? If not, will he have to repeat years, holding him back from his peers?  

These are the issues that the outside world doesn’t really understand because Caius doesn’t look ‘ill’. It’s the reason I believe that greater awareness and understanding of conditions like biliary atresia would help young people like Caius, which is why I’m sharing my story.  

It’s exactly 13 years since Caius had his Kasai operation and we are so thankful to the NHS staff who saved his life that day and for every day we have had with him since. They gave him the opportunity to grow and live a relatively normal life despite all the obstacles he has faced, and we shall continue to encourage him to make the most of every opportunity which comes his way. 

During the assessment doctors talked about survival rates to successful milestones such as five, 10 and 15 years post-transplant, but these seemed like impossible dreams when she was so sick. It was decided she should be listed for a liver transplant so there was at least hope. By now her condition was deteriorating. She was too ill to return home to Scotland so we would have to wait in hospital in Leeds until a liver arrived. She needed round the clock monitoring and medication, she was now miserable and suffering with the worst symptoms of liver failure.

Thankfully, after eight days, a new liver was gifted to her. The transplant surgery was successful, following some bumps during her initial recovery we returned home many weeks later with a much happier baby. 

When I think back to those long eight days waiting for a call, nursing a very ill baby, we would have given anything to fast forward to better times. This year we celebrated one of the big milestones the doctors had talked about at the assessment – Erin’s 15 year post transplant anniversary. It may sound like a strange thing to celebrate such a stressful time, it is certainly bittersweet knowing it is a very different milestone for her donor family. However reaching this stage was never a ‘given’ and it feels like getting here deserves some recognition and reflection.

Recognition of Erin’s inner strength and of the amazing medical teams who have looked after her for 15 years.

Reflection of the legacy her donor left us all. We think of her donor family often, we have written to them several times to thank them though it never seems enough. Hopefully it gives them some comfort to hear about how many great things have come from their gift.

Since transplant Erin has grown to be a compassionate, thoughtful, intelligent individual with a passion for music and a strong moral compass.  She embraces an active, busy life and is forging her own path to independence by embracing  experiences and working hard at achieving her goals.

She plays badminton regularly, which led her to represent her country at the World Transplant Games in Perth, Australia when she was 12 years old and again in Dresden, Germany when she was 15, winning gold medals at both. More importantly she met incredible people from all over the world who have had similar journeys and shared her story to inspire others.

She has had a weekend job waitressing in a local restaurant since she was 14 years old, something she was determined to do despite an initially steep learning curve that pushed her outside her comfort zone. 

She completed the Duke of Edinburgh Bronze and Chief Scout’s Platinum awards before turning 15 whilst being a member at an Explorer Scout group. As part of this she volunteers with their Cubs section and has thrived on this opportunity to develop many skills and build friendships, she is now continuing with this at Silver level.

This may all sound blindly optimistic if your child is at the start of their journey. In Erin’s words “it isn’t all sunshine and rainbows” post-transplant, there is a lot of medical management involved in keeping her healthy. It isn’t always straightforward and it is certainly not stress free. Travel to hospitals and communication with medical teams feature heavily in our lives, we joke that she needs a full- time medical secretary. Children who have had transplants do have to deal with a lot of medical procedures and sometimes restrictions on what they can do. We were very lucky to have excellent play therapists involved in her early years to help her cope with procedures. She has always amazed medics with her compliance which was developed with understanding of what they were doing and why. Now she is a young adult, keen for independence, she needs to be able to navigate her future medical management by communicating with medics and advocating for herself.

Through the last 15 years, CLDF have always been there to help us as a family. Knowing they are funding research to improve care and treatments is so incredibly comforting. In the early days they were on hand with fact-checked information leaflets that we desperately needed. Then we attended family days and met others who had walked the same path and had wonderful, happy children that gave us hope. The more events we attended, the more connections we made, with others who really understood the journey we were on. As Erin grew into her own little person she made friends with other children who faced some of the same challenges she did and these are now lifelong friends. These friends really understand what it is like to navigate post-transplant life during the teenage years, employment and now beyond into adulthood. Attending the CLDF events have brought so many positives to us all but in particular it has increased Erin’s confidence, expanded her support network and given her the chance to have wonderful experiences that would be impossible to arrange without their support.

We are very grateful for all the positives the CLDF have brought us and we can look forward towards celebrating future milestones knowing we have all the people around us we need to help us get there.

Naturally we do all we can to minimise the impact of Rosie’s biliary atresia on her and the rest of the family. Daisy doesn’t say much at all about it, but we notice that if they are ever apart due to appointments or sickness, they clearly miss each other and are always happy to be reunited. Big brother, Marley, who is seven, did struggle a few months ago with understanding Rosie’s condition and we’ve had the sibling toolkit from Children’s Liver Disease Foundation which has been great to use. This is certainly something we shall also request for Daisy if it looks like she’s showing signs of anxiety too. 

We try not to put too much focus on Rosie’s temperature as this can cause upset for all three children if it stops us doing certain activities (as happened earlier this year when Rosie was admitted to hospital on holiday and it upset them all). 

Our friends and family are very considerate about being around us if they are poorly themselves and although sometimes this can upset the children if they feel they are missing out, we need to keep as safe as possible and reduce any unnecessary hospital stays. 

Rosie’s life is certainly not all about biliary atresia though. She’s a positive, full of life, bossy little lady who doesn’t let anything get in her way! As well as excelling at school, she loves gymnastics club and swimming. She thoroughly enjoyed last year’s holiday to Morocco, and we managed to get up to Northumberland for a family Christmas which was just magical! 

Rosie’s dad, Alex, recently had a tattoo done showing her Kasai scar. Rosie loves it and tells her dad that she knows it’s there, so she doesn’t feel lonely having a scar! 

Using Children’s Liver Disease Foundation has always been a lifeline for us, whenever I am feeling unsure or just need a bit of support. I know the support is there and for that I am eternally grateful.