When Jess first ran the London Marathon 15 years ago, it was to raise funds for Children’s Liver Disease Foundation, in return for the information and support she’d received when her little girl, Alice, was diagnosed with biliary atresia. So, it was a very special occasion this year when Alice, now a 24-year-old paediatric nurse, took on the marathon, to raise funds for the same cause! Here is their story.

Jess’ story   

Running the London Marathon is such an amazing and rewarding experience, that’s why I have run it twice, initially in 2011 in 5hrs 33mins and the second time in 2015 in 5hrs 15mins. I continue to enter the ballot each year, although if I did get in again, it would probably take me much longer and my body wouldn’t like it much!

I have always wanted my children to have the same experience, the training, the challenge, the sense of achievement and exciting togetherness whilst running with thousands of other people. I was very pleased when Alice started running 5Ks whilst at university, I remember thinking then how beneficial this is for her health and well-being. So, when she said she wanted to run the London Marathon I was so proud and very excited for her. I was a little anxious throughout her training, wondering what the effect would have on her body and her liver, but Alice is strong, resilient and sensible, she knows her body and she read all about the nutrition and hydration needed.  

Once Alice commits to a challenge, she goes all in to achieve her goal, she’s a real inspiration. And although I knew she could do it and I knew she would love it, I didn’t realise how calm and confident she would be during all those hard training runs, she never complained once. My brother has done over 20 marathons, so she took a lot of advice from him, and he also went with her on a few of her long training runs, (he’s a very proud uncle now!) The only input I had was telling her how all the training and the hard work will be worth it on the day. She motivated herself!

And when the big day came, I have to say, I loved, loved, loved watching Alice run the marathon, I found it all very emotional, I was so proud wanting to tell everyone what she was doing and why. Unless you knew Alice in her early years, it is difficult to understand what she went through and why running 26.2 miles is even more of a massive achievement. Did I ever think all those years ago she would be doing this? Definitely not! Did I worry about her during the marathon, Yes – I always worry about her, I think that’s what parents do but I also know she is healthy, fit, well and strong. 

I’m so happy for Alice to have achieved another super event in her life. The fact that she achieved this and raised money for the British Liver Trust makes the whole experience even more special. She recognises how important this charity is to others as it is to her and us. 

 

Alice’s story 

Since my mum took part in the marathon, we have always watched it on TV which made me really want to take part myself. I have a list of 30 things to do before I’m 30 and this is a big one on there!  I always knew that mum had run those marathons for CLDF and the money she raised and the training she put in was inspiring to me to do the same, as I know how proud I was of her. 

Biliary atresia has always been a part of my life. I had two operations and plenty of years in and out of hospital up to 2009 but I’m lucky enough to be currently very stable and healthy. I have appointments once a year for blood tests and scans which are always nerve- wracking. But I’m not on any medication at the minute which I’m incredibly grateful for,  and I know I’m privileged to be in this position, as many in my situation have had a transplant already.  

The impact of my condition is not really the physical way people would assume, it’s more of an emotional burden – the thought that one day I could need a transplant and having to be cautious with alcohol. But equally it makes me want to do as many things as I can and truly appreciate how lucky I am. I thought that to be able to run a marathon with a liver disease is pretty good going. And to be able to spread awareness for this disease is so important as it’s not well known at all. 

Although I have always enjoyed running, it’s always been on a small scale and never that serious. So once I began training for the marathon, I impressed even myself, seeing  how just a few months can improve my distance dramatically.  

 

As for the day itself, I have to say I absolutely loved it! I was so nervous beforehand, but I called my parents and thought about why I was running and it made me so excited. I also met a man on the train who had run 17 marathons so I thought this can’t be as bad as that! The atmosphere was incredible and so motivating. I’d seen it on the TV of course but experiencing it as a runner was a whole other level. Seeing everyone cheer for their loved ones and all the charities was so special. 

It’s undoubtedly a challenge! The first 19 miles were ok although it was very hot, but the last seven miles was the real hard part. Having to walk because I felt so sick wasn’t what I anticipated – I thought it would have been my legs that gave way first. And hearing strangers cheer for you is a strange but also very motivating experience. 

I wouldn’t have got through it without my friends and family coming to see me. The support I got on the day was so valuable. My other motivator for running was my grandad who unfortunately passed away on Christmas Eve, he was such a big supporter of mine and I know he would have loved to have seen me run.  

 

In the end I completed it in 5 hours 17 and raised £2,906! Everyone has been so generous, and it felt great to smash my original target of £2000. I now feel really proud of myself both to have run a marathon but also to have raised money and awareness for liver disease. It was such an emotional day and the memories it’s given me are so special. Now I can say I ran 15 years after my mum for the exact same reason! 

 

The post Why I wanted to follow in mum’s footsteps! appeared first on Childrens Liver Disease Foundation.

 

We’re very grateful to Aaron, a resilience speaker and author from the USA for sharing with us his story of growing up with biliary atresia. While there will have been differences in his medical care, compared to the UK, his message to young people with biliary atresia is an inspiring and universal one. 

 

I was born on December 20, 1983, five days before Christmas, and I came into the world already fighting. I just didn’t know it yet. And neither did anyone else. 

The Diagnosis: A Christmas baby and a bilirubin lamp 

When I was born jaundiced, nobody panicked. My sister had been born jaundiced three years earlier, and she was perfectly fine. So the hospital placed me under the jaundice lamp, the blue phototherapy light that helps a newborn’s liver break down and excrete the bilirubin that causes that yellow tinge in the skin and eyes, and sent me home three days later in a Christmas stocking. 

For parents reading this who have just been through the same thing with their own baby, I want to explain what was happening in my body during those early weeks, because understanding it helped me make sense of my own story later. When a newborn is jaundiced, bilirubin, a yellow substance produced when red blood cells break down, builds up in the blood because the baby’s liver isn’t yet mature enough to clear it efficiently. Phototherapy works by using blue light to convert bilirubin into a water-soluble form the body can excrete. In most babies, the liver matures, bilirubin clears, and the jaundice resolves within two weeks. 

Mine kept coming back. 

My parents could tell something was wrong. I wasn’t eating well. I wasn’t thriving the way I should have been. At my paediatrician’s office, they continued to run bilirubin tests. The levels would clear after treatment, and then, days later, I would fall ill again. The pattern repeated itself several times over the first months of my life, and each time the answer seemed to be the same: treat the bilirubin, send the baby home. 

What was actually happening, what nobody had yet identified, was that my bile ducts were blocked. In biliary atresia, the ducts that carry bile from the liver to the small intestine are either absent or severely damaged. Without a clear pathway for bile to flow, it backs up into the liver, causing progressive damage. Phototherapy can temporarily reduce bilirubin in the bloodstream, but it cannot fix the obstruction causing it. My bilirubin would clear on the surface and return from within. The system was broken at the source. 

It was a young doctor who had recently been transferred to my paediatrician’s office from Children’s Hospital Los Angeles who finally saw what others had missed. His name was Dr. Praful Shah. He recognised my symptoms, ran the correct tests, and delivered the diagnosis: biliary atresia. 

I was subsequently referred to Children’s Hospital Los Angeles (CHLA) where I would undergo the Kasai procedure at 115 days old. 

Even at that point, my parents had to wait nearly three more weeks after diagnosis before surgery. I can only imagine what those weeks felt like for them — knowing what was wrong, and waiting. 

 

The Kasai and the years that followed

The Kasai procedure, hepatic portoenterostomy, was performed at CHLA when I was 115 days old. The surgery, which creates a new pathway for bile to drain from the liver, went well. And remarkably, for a biliary atresia child, my outcomes were unusually good. I never developed portal hypertension. I never experienced cholangitis. The Kasai, as my doctors later told me, appeared to have worked as well as it possibly could. 

I am not sharing that to suggest my childhood was without difficulty. I am sharing it because I know that parents of newly diagnosed children read stories like mine looking for hope, and the honest truth is that a Kasai procedure performed well, and early, can give a child decades of functional life. I am proof of that. 

The complications I did experience came later. In my junior year of high school, I was hospitalised with a high fever that lasted about a week. In my early thirties, those week-long feverish episodes returned periodically — my body reminding me that my liver, however resilient, was still carrying the weight of a condition that had been with me since before I could walk. Through all of it, my MELD score remained low, which meant I wasn’t sick enough to list for transplant just yet. I existed for years in a kind of limbo that many BA adults will recognise: not well enough to forget, not sick enough to be prioritised. 

 

 

That changed in 2017, and by 2019, my body had reached its limit. What followed, two liver transplants, a kidney transplant, 17 surgical procedures in five weeks, four months in hospital, relearning to walk at 115 pounds, is a chapter that could fill its own story. The short version is this: I survived. And I rebuilt.

 

 

Growing up: The spleen guard, the laughter, and the loneliness 

Biliary atresia was always present in my childhood, though I learned early to carry it in ways that didn’t announce themselves. 

The most visible reminder was on the sports field. Because my spleen was enlarged, a common consequence of liver disease, I wore a large plastic protective device under my jersey whenever I played certain sports (basketball and baseball). My doctors were very clear with me: a direct impact to the spleen could cause internal bleeding. That was a heavy piece of information to carry as a kid who loved sport and wanted nothing more than to be the same as everyone else athletically. I was always a little more cautious than my teammates, always holding something back. I’ve wondered since then what I might have achieved if I hadn’t been managing that fear alongside everything else. 

 

 

In elementary school, some children were cruel in the way children sometimes are, names, questions, pointing at the thing that made me different. I learned quickly that humour was my shield. If I could make people laugh, the spotlight shifted from my condition to my personality. Laughter became a survival tool before I even understood what survival meant. It made me feel normal. It made other people comfortable. And it planted a seed in me, the understanding that how you carry a story matters as much as the story itself. 

My education didn’t suffer. My friendships, by and large, were genuine. But the loneliness I felt was specific and quiet the kind that comes not from being excluded but from being unseen in a particular way. Nobody else in my world had biliary atresia. Nobody else had grown up the way I had. I couldn’t point to someone and say: there, that’s who I am, that’s what’s possible for me. 

The only window my parents had into a life beyond ours was a monthly liver newsletter. Inside it, there was a mention of a biliary atresia patient eight years older than me living nearby. My mother built a relationship with her family. But I never met her. I never met another BA patient my age until well into adulthood. 

I think about that a lot now, working in patient advocacy. Those children were around me my entire childhood, living the same cautious sports days, wearing their own invisible weights, laughing their own defensive laughs and we never found each other. That is the gap that organisations like the Children’s Liver Disease Foundation, and the Biliary Atresia Research and Education group (BARE Inc.), exist to close. I wish they had found me or existed earlier in life, but I am thankful for social media and the connections I have been able to make. 

Life Now: From the ICU to the Speaking Stage 

My career before transplant was in banking. I was a senior service director at Bank of America, managing complex client relationships with an economics degree from Florida A&M University behind me. I was good at it. But I never felt fully alive doing it. 

After my transplant, after surviving what my medical team called the most complex case they had managed, I knew with complete clarity what I was supposed to do. I had been given a life back. I was going to use it deliberately. 

I spent time working in the Homeless Services Division of The Salvation Army, serving people who were navigating their own forms of survival. That work fed something real in me. But eventually I recognised that my greatest contribution wasn’t going to be behind a desk at all, it was my story, told out loud, to people who needed to hear that the impossible is negotiable. 

Today I am a resilience speaker, a life coach, and the author of AKDS Life: Motivation and Reflection. I created the M.E.D.S. Protocol, a framework built around Mindset, Environment, Discipline, and Spirituality, that I developed to explain what actually rebuilt me after transplant. Not just motivation. Not just willpower. Systems. The same systems, I have since learned, that can help anyone navigating a long-term health condition, a major life transition, or a rebuild after loss. 

 

 

I am also an A3 Certified Patient Advocate through the Global Liver Institute, a board member of the Liver Health Foundation, and a 2025 recipient of the Liver Health Foundation Courage Award. I have spoken at Children’s Hospital Los Angeles, Business Management Schools, High Schools, various other liver foundations, and at patient advocacy conferences. And I earned my black belt in Mixed Martial Arts from the West Coast World Martial Arts Association, post-transplant, at a weight I am proud of, with a body I have chosen to honour. 

Outside of work, I play golf, train martial arts, go on mindset walks, ride bikes, do yoga, cook, travel when I can, and spend time with my loved ones as often as possible. I went on The Price is Right (A famous game show in the states) and won the Showcase which consisted of a trip to Fiji, a trip to Iceland, and a hot tub. I mention this not as a footnote but as a statement of philosophy: when you have been given your life back, you live it. All of it. Loudly. 

 

 

What I would tell the young people reading this 

Don’t wait until transplant to live your life. 

That is the one thing I would go back and tell the boy in the baseball jersey with the plastic guard underneath. I allowed the possibility of a future transplant to hold me back from pursuing things earlier, from going further, from going harder, from trusting that my body could carry more than I gave it credit for. 

Any moment you have where you are feeling good, GO. Full send. Do something that will make you genuinely happy. Take the trip. Try the sport. Walk onto the stage. Apply for the thing you’ve been putting off. 

We experience life based on what we allow ourselves to focus on. And if you spend your focus on what might go wrong, you will miss what is going right. Biliary atresia is a part of your story. It is not the ceiling of your story. 

The children who grew up with this condition and never found each other, I was one of them. I don’t want that for the young people growing up with BA today. Find your community. Tell your story. Let people see you clearly, not through the softer lens you use to protect them from the truth of what you carry. 

Your scars are not a warning. They are life credentials. 

 

 

Aaron K. Jackson is a resilience strategist, keynote speaker, life coach, and A3 Certified Patient Advocate based in Long Beach, California. He is the author of AKDS Life: Motivation and Reflection, a 2025 Liver Health Foundation Courage Award recipient, and a post-transplant black belt in Mixed Martial Arts. You can find him at www.akds.life and on Instagram and TikTok @AKDSLife. 

 

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Music student Liam is loving life at Durham University and is a big believer that a medical diagnosis does not have to define your future. Here is his story:

I was diagnosed with biliary atresia at just eight weeks old at Birmingham Children’s Hospital and underwent a Kasai procedure at 11 weeks. I don’t remember that time, of course, but my parents have always told me how determined I was from the very beginning. My early years involved periods in and out of hospital with liver infections, but by the age of two my health began to stabilise. I remained on medication until I was 11, and since then I’ve been fortunate to enjoy good health. 

 

From a young age, I developed a strong connection with music. What began as curiosity at the piano turned into formal lessons at six, and during primary school I discovered a real love of singing, music and performing. I was involved in a number of musical theatre productions, and I also became an active member of my church choir. That introduced me to choral music and gave me the opportunity to learn the organ. 

Growing up, I rarely felt limited by my condition. I did avoid high-impact sports, which at times felt isolating, particularly when I was younger. However, music gave me both a focus and a sense of belonging. I threw myself into as many musical and non-musical ensembles as I could, building confidence and forming lasting friendships. 

 

I joined the Scouts at the age of six and became a volunteer at 14. Scouting has played a huge role in shaping who I am, giving me opportunities and experiences I will never forget. Through Scouting, I completed my Bronze, Silver and Gold Duke of Edinburgh’s Awards, taking part in walking, cycling and canoeing expeditions. 

After achieving strong GCSE results at The Castle School, I attended King’s College, Taunton on a music scholarship, where I studied A Levels in Music, Biology and History. After completing my A Levels and achieving Grade 8 in singing, piano and organ, I spent a gap year as a Choral Scholar at Sherborne School. During that time, I worked in the music department and sang regularly in Sherborne Abbey. It was a hugely valuable year for my development, and I was proud to achieve a piano diploma with distinction. 

 

 

I then went on to Durham University to study Music, where I am now in my second year. Alongside my degree, I hold a Choral Scholarship at Durham Cathedral, balancing a demanding academic and musical schedule. I’m also involved in a range of university societies, both musical and non-musical, and I continue to volunteer with a local Scout group in Durham. 

Now an adult, I lead a full and active life. For many years I was told I wouldn’t be able to drink alcohol, something my friends always respected. However, when I was 18, doctors at the Queen Elizabeth Hospital in Birmingham told me that, in moderation, I could. I still remember having my first pint at my local Wetherspoons on the day I finished my A Levels. These days, I’m very careful and keep my intake low, never exceeding seven units a week, but I’m grateful to be able to enjoy social occasions with friends. 

 

Looking back, living with liver disease has shaped me in positive ways. It has given me focus, resilience and a strong sense of perspective — qualities that continue to guide me as I look ahead to the future. 

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Title: Perinatal and lifestyle factors associated with childhood alanine aminotransferase levels as an early indicator of MASLD: a population-based study  

Source: The Journal of Pediatrics 2026, May 12. [E–publication]  

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Date of publication: May 2026  

Publication type: Population-based study

Abstract: Objective: To investigate associations of perinatal and lifestyle factors with alanine aminotransferase (ALT) levels as an early indicator of metabolic dysfunction-associated steatotic liver disease (MASLD).

Study design: Data from the population-representative longitudinal PANIC study, conducted among Finnish schoolchildren (n=736), were utilized. Three visits during childhood included comprehensive assessments of metabolic biomarkers, body composition, and lifestyle factors. Perinatal data were obtained from registries and questionnaires. Altogether, 488 children were included in mid-childhood (ages 7-8), 421 in late childhood (9-11), and 255 in adolescence (15-17). The predefined primary outcome was plasma ALT level, used as a biomarker of early-stage MASLD.

Results: In mid-childhood and adolescence, significant associations (P <0.05) between the children’s ALT were detected for pre-pregnancy hypertension (β=0.155-0.157). In late childhood, higher waist-to-height ratio and visceral adiposity by DXA became positively associated with ALT independent of body mass index standard deviation score (β=0.246-0.377). In adolescence, higher insulin levels and dyslipidemia (0.184-0.378) were positively associated with ALT. In late childhood, intake of protein, and animal and dairy products (β=0.121-0.184), and in adolescence, intake of protein and fish (β=0.154-0.280) were positively associated with ALT, and intake of vegetables, fruit and berries and fructose (β=-0.135 to -0.141) showed a negative association. In mid- and late childhood, levels of phenylalanine and branched-chain amino acids (β=0.131-0.248), and in adolescence, those of omega-3/6 (β=-0.103 to 0.198) and all fatty acids (β=0.197-0.228) were all positively associated with ALT. Sleep or measured physical activity were not associated with ALT. Several associations attenuated after multiple-testing correction for false discovery rate.

Conclusions: Maternal hypertension, offspring intake of protein, animal and dairy products, levels of phenylalanine, branched-chain amino acids and fatty acids, and offspring cardiometabolic risk factors correlated with elevated ALT as an indicator of MASLD. The findings underscore the importance of pre- and post-natal influences and support early prevention, although caution is warranted as associations were modest and reduced after adjustment for false discovery rate.

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Title: Living-donor liver transplantation in children with inherited metabolic and genetic cholestatic liver diseases: a single-center retrospective cohort study  

Source: Orphanet Journal of Rare Disease 2026, 21 (1): 183 

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Date of publication: April 2026 

Publication type: Single-center retrospective study

Abstract: Background: Living donor liver transplantation (LDLT) has become an important therapeutic option for children with selected inherited metabolic and genetic cholestatic liver diseases (IM-GCLDs).However, evidence on disease-specific outcomes across different diagnostic categories remains limited, and we therefore conducted a single-center retrospective study with contemporaneous non-IM-GCLD pediatric LDLT recipients as a comparator to better contextualize transplant-related outcomes and disease-specific benefits.

Results: Among 21 children with IM-GCLDs, the median follow-up was 21 months; two patients died (one perioperatively from disseminated intravascular coagulation and one at 21 months from pneumonia-related multiorgan failure), and all others are alive with functioning grafts. Disease-specific manifestations, including neuropsychiatric symptoms, portal hypertension, metabolic crises, cholestasis, hyperbilirubinemia, and hyperammonemia, improved or resolved in almost all survivors.At 6 months after LDLT, in children <10 years, mean weight- and height-for-age Z-scores increased from -0.48 to 0.43 and from -0.76 to -0.01; in children ≥10 years, mean height Z-scores increased from -1.49 to -0.53 while BMI Z-scores showed no significant change. Overall survival did not differ significantly between IM-GCLDs and non-IM-GCLD indications.

Conclusions: Living donor liver transplantation in children with IM-GCLDs not only improves survival but also confers disease-specific benefits, including recovery of neurologic function, metabolic stabilization, relief of portal hypertension and cholestasis, and catch-up growth. These findings support LDLT as an important therapeutic option for IM-GCLDs, while diagnosis-tailored perioperative assessment and long-term management remain essential given the phenotypic heterogeneity.

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Title: Clinical features of biliary atresia complicated by cytomegalovirus infection and prognostic analysis after Kasai portoenterostomy

Source: Journal of Pediatric Surgery 2026, May 8. [E–publication]

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Date of publication: May 2026 

Publication type: Retrospective study

Abstract: Objective: To explore the unique clinical characteristics of biliary atresia(BA)combined with cytomegalovirus infection and its impact on early and late prognosis after Kasai portoenterostomy(KPE).

Methods: This was a retrospective study involving children diagnosed with BA and treated with KPE at the Children’s Hospital of Jiangxi Province from January 2017 to October 2023. Based on the presence or absence of CMV infection, the patients were divided into a CMV infection group and a CMV non-infection group. The follow-up period ended on October 1, 2025, with a minimum follow-up duration of >2 years. Data were collected and analyzed, including basic characteristics, core disease features, core laboratory indicators, treatment-related indicators, surgical success within 3 months postoperatively, and native liver survival status after more than 2 years.

Results: A total of 70 BA patients were included, with 19 in the CMV infection group and 51 in the CMV non-infection group. In the CMV infection group, 31.6% (6/19) had successful surgery, while in the non-infection group, 47.1% (24/51) had successful surgery. In the CMV infection group,78.9% (15/19) experienced native liver failure (NLF), whereas in the non-infection group, 51.0% (26/51) experienced NLF. Differential analysis showed significant differences between the CMV infection group and the non-infection group in terms of age at admission, surgical age, hepatomegaly, surgical weight, GLO levels, AST levels, DBIL levels, gallbladder ejection fraction, postoperative antiviral treatment (P < 0.05), while no significant differences were found in gender, ALB, ALP, ALT, GGT, PLT, Splenomegaly, BASM, other associated malformations, BA anatomical classification, early postoperative cholangitis, and total postoperative steroid dose (P > 0.05). Univariate and multivariate analyses showed that CMV infection is an independent risk factor for long-term NLF postoperatively (HR = 1.988, 95% CI: 1.005,3.932, P = 0.049), but it had no significant effect on the short-term success rate of KPE (OR = 2.118, 95% CI: 0.644,6.967, P = 0.217). Kaplan Meier plotter showed that the cumulative incidence of NLF events was significantly higher in the CMV infection group, and the median native liver survival time was significantly shorter (Log-Rank P < 0.05).

Conclusion: BA patients with CMV infection exhibit clinical features such as delayed diagnosis and more severe liver damage. CMV infection does not specifically cause gallbladder “absence” or “functional abnormality” as a single defect, but rather more broadly interferes with the normal development of the biliary system, making it difficult for children to maintain an ideal state of “structurally intact and functionally normal.” Although CMV infection does not affect the early success rate of KPE, it is an independent risk factor for long-term NLF, significantly reducing the long-term survival rate of native liver in BA patients. Therefore, in the future, CMV status can be used as an important indicator for risk stratification and long-term follow-up of BA patients.

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Title: The impact of early allograft dysfunction severity on graft and recipient outcomes in pediatric liver transplantation

Source: Annals of Hepatology 2026, May 12. [E–publication]  

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Date of publication: May 2026 

Publication type: Retrospective study 

Abstract: Introduction and objectives: Early allograft dysfunction (EAD) substantially compromises graft and recipient outcomes; the clinical consequences of EAD vary according to severity. Research focusing on EAD in pediatric liver transplantation (pLT) remains notably limited. This study sought to validate the EAD severity grading models in pLT and assess the impact of varying severity grades of EAD on both graft and recipient outcomes.

Patients and methods: This retrospective study enrolled 360 patients who performed pLT (living-donor liver transplantation (LDLT)=299, deceased-donor liver transplantation (DDLT)=61) between April 2017 and September 2024. The severity of EAD was graded using the Liver Graft Assessment Following Transplantation (L-GrAFT₇) risk score.

Results: The incidence of binary EAD in pLT was 34.2%. The area under the receiver operating characteristic curve of EAD, Model for Early Allograft Function (MEAF) score, and l-GrAFT₇ risk score for predicting graft loss within 90-day post-transplant were 0.84, 0.97, and 0.96 in the LDLT cohort; and 0.79, 0.78, and 0.95 in the DDLT cohort. Significant differences were observed among the low-, moderate-, and high-risk groups in the LDLT cohort regarding ventilator support time, ICU stay time, length of hospitalization, death in hospital, early complications (including hepatic artery thrombosis, portal vein thrombosis, hepatic vein/inferior vena cava stenosis/thrombosis, and biliary complications), and late complications (including hepatic artery thrombosis, portal vein stenosis/thrombosis and hepatic vein/inferior vena cava stenosis). In the DDLT cohort, significant differences were found among the three groups in terms of ICU stay time, death in hospital, early complications (including intra-abdominal bleeding and biliary complications), and late complications (hepatic vein/inferior vena cava stenosis) (p < 0.05). The log-rank test revealed statistically significant differences in graft and recipient survival among the three groups within 90-day, 180-day, and 1-year in both the LDLT and DDLT cohorts (p < 0.05), with this significant difference also observed throughout follow-up period in the DDLT cohort (p < 0.05).

Conclusions: The MEAF score and l-GrAFT₇ risk score effectively predict early graft loss following pLT, with high-risk EAD markedly compromising both short- and long-term graft and recipient outcomes.

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Title: Split and reduced-size liver transplantation in pediatric and adult recipients: single-center outcomes and a left-lateral segment pediatric comparison

Source: Pediatric Transplantation 2026, 30 (5): e70337 

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Date of publication: May 2026  

Publication type: Retrospective, single-centre study

Abstract: Background: Pediatric liver transplant candidates, especially infants, have persistently high waitlist mortality. Deceased-donor technical variant grafts, including split liver transplantation (SLT) or reduced-size liver transplantation (RSLT), could expand access but remain underutilized. Whether splitting compromises the primary recipient’s outcomes is uncertain.

Methods: We conducted a retrospective, single-center study of deceased-donor technical variant liver transplants (2010-2025). Recipients were grouped as pediatric split (P-SLT), pediatric reduced-size (P-RSLT), and adult split (A-SLT). Primary outcomes were 1-year graft and patient survival; secondary outcomes included vascular complications, biliary complications, waitlist time, and waitlist mortality. A prespecified subgroup compared pediatric left lateral segment grafts by technique (split vs. reduced).

Results: Fifty-four patients were included with 14 P-SLT, 26 P-RSLT, and 14 A-SLT cases. Vascular complications were infrequent (1 case each in P-SLT and P-RSLT). Biliary interventions were required during the index hospitalization in 14% (P-SLT), 19% (P-RSLT), and 21% (A-SLT) of recipients. One-year graft survival was 83% (P-SLT), 92% (P-RSLT), and 100% (A-SLT), with patient survival of 92%, 96%, and 100%, respectively. In pediatric LLS recipients, outcomes with split versus reduced grafts showed 1-year graft survival rates of 83% versus 100% (p = 0.333) and patient survival rates of 92% and 100%, respectively (p = 0.619), with no significant differences in complications. Pediatric waitlist during the study period had a mortality rate of 0.21 deaths per 1000 person-days (95% CI 0.04-0.37).

Conclusions: At an experienced center, SLT and RSLT achieved favorable 1-year survival with low vascular morbidity.

The post Split and reduced-size liver transplantation in pediatric and adult recipients: single-center outcomes and a left-lateral segment pediatric comparison appeared first on Childrens Liver Disease Foundation.

Title: Medication self-management during the developmental transition of responsibility among Chinese adolescent liver transplant recipients: a qualitative descriptive study

Source: European Journal of Pediatrics 2026, 185 (6): 400

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Date of publication: May 2026 

Publication type: Single-center qualitative descriptive study  

Abstract: Adolescence is a high-risk period for non-adherence to immunosuppressive therapy after pediatric liver transplantation, especially as medication responsibility shifts from parent-led routines toward increasing adolescent participation. However, limited evidence explains how adolescents manage medication demands in daily life within school, family, and peer contexts. We conducted a single-center qualitative descriptive study in a tertiary pediatric liver transplant clinic in Southwest China. Using purposive sampling, we recruited adolescents aged 13-17 years who were at least 1 year post-transplant and remained in pediatric follow-up at the time of interview (N = 12). None had transferred to adult services. Semi-structured one-to-one interviews were conducted between July and August 2025, audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis. Analytic depth was supported through reflexive memoing, post-interview debriefing, preliminary coding during recruitment, dialogic discussion within the research team, and an audit trail. Four interrelated tensions shaped medication self-management during the developmental transition of responsibility: (1) regimen requirements versus school-day routines; (2) growing expectations for autonomy versus uneven readiness for self-management; (3) family and school support that was both enabling and conflict-provoking; and (4) a desire for empowerment and peer normalcy in the context of stigma and limited youth-oriented resources. Participants described overlapping self-management patterns rather than fixed types. In two accounts, episodes of repeated compromise, treatment fatigue, or reduced engagement suggested ongoing vulnerability in particular contexts. Conclusions: Medication non-adherence in adolescence may be shaped by contextual constraints as well as knowledge or motivation. Support should extend beyond standardized education to include individualized medication planning, staged autonomy-building within pediatric follow-up, practical school-day planning, and discreet youth-centered adherence strategies that better fit adolescents’ daily lives.

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Title: What’s new in pediatric metabolic dysfunction-associated steatotic liver disease and metabolic dysfunction-associated steatohepatitis

Source: Clinics in Liver Disease 2026, 30 (2): 469-481

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Date of publication: May 2026

Publication type: Review article

Abstract: Metabolic dysfunction-associated steatotic liver disease (MASLD) is now the most common chronic liver disease in children, with rising prevalence and substantial systemic consequences. This review synthesizes recent advances in pediatric MASLD and its severe form, metabolic dysfunction-associated steatohepatitis (MASH), with emphasis on new insights in epidemiology, pathogenesis, and disease burden. Diagnostic evaluation in children remains particularly challenging, requiring integration of clinical, laboratory, imaging, and histologic data, while balancing accuracy, feasibility, and risk. Progress will depend on the development of pediatric-specific tools, equitable access to care, and rigorously designed clinical trials to guide future management.

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