Publication Links
The paediatric liver transplant experience in Johannesburg, South Africa: A broad overview and update – PubMed <https://pubmed.ncbi.nlm.nih.gov/39041452/>
Minding the gap-Providing quality transplant care for South African children with acute liver failure – PubMed <https://pubmed.ncbi.nlm.nih.gov/32871038/>
ABO-incompatible liver transplantation – exploring utilitarian solutions to restricted access and organ shortages: A single-centre experience from Johannesburg, South Africa
– PubMed <https://pubmed.ncbi.nlm.nih.gov/39041451/>
Hyperreduced left lateral living donor liver transplant in a 4.5 kg child-A first in Africa – PubMed <https://pubmed.ncbi.nlm.nih.gov/37189302/>
Featured Cover – Van der Schyff – 2023 – Pediatric Transplantation – Wiley Online Library <https://onlinelibrary.wiley.com/doi/10.1111/petr.14581>
Successful ABO-incompatible living donor liver transplant for acute liver failure secondary to Hodgkin’s Lymphoma in a child – PubMed <https://pubmed.ncbi.nlm.nih.gov/32722865/>
Living donor liver transplant from an HIV-positive mother to her HIV-negative child: opening up new therapeutic options – PMC <https://pmc.ncbi.nlm.nih.gov/articles/PMC6200383/>
Adult and Paediatric Liver Transplantation: Wits Transplant Data 2020 | Wits Journal of Clinical Medicine <https://journals.co.za/doi/full/10.18772/26180197.2023.v5n1a6>
Wits Transplant Annual Data Report 2018 – adult and paediatric liver transplantation | Wits Journal of Clinical Medicine <https://journals.co.za/doi/10.10520/EJC-1932c05c51>
Cryptogenic Cirrhosis and Hepatopulmonary Syndrome in a Boy with Hepatic Hemangioma in Botswana: A Case Report and Review of the Literature – Banda – 2017 – Case Reports in Pediatrics – Wiley Online Library <https://onlinelibrary.wiley.com/doi/10.1155/2017/7940365?msockid=2004a7c220596bb61d52b57e219f6ae6>
GALA STUDY
Natural history of liver disease in a large international cohort of children with Alagille syndrome: Results from the GALA study – PubMed <https://pubmed.ncbi.nlm.nih.gov/36036223/>
Event-free survival of maralixibat-treated patients with Alagille syndrome compared to a real-world cohort from GALA – PubMed <https://pubmed.ncbi.nlm.nih.gov/38146932/>
Condition-Specific Growth Charts for Children With Alagille Syndrome | Gastroenterology and Hepatology | JAMA Network Open | JAMA Network <https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2841770>
Elevated Serum Bile Acids Predict Poor Liver Outcomes in Children With Alagille Syndrome: Results From the GALA Study Group – PubMed <https://pubmed.ncbi.nlm.nih.gov/41250932/>
PORTAL STUDY
Prevalence, management and efficacy of treatment in portal vein obstruction after paediatric liver transplantation: protocol of the retrospective international multicentre PORTAL registry – PubMed <https://pubmed.ncbi.nlm.nih.gov/37500271/>
Portal Vein Obstruction in Pediatric Liver Transplant Patients: An Evaluation of Self‐Reported Management Practices – PMC <https://pmc.ncbi.nlm.nih.gov/articles/PMC12106351/>
Incidence and risk factors for portal vein complications after pediatric liver transplantation: A retrospective cohort analysis from the PORTAL registry – PubMed <https://pubmed.ncbi.nlm.nih.gov/40991738/>
HEPATIC STUDY
Incidence, management and outcomes in hepatic artery complications after paediatric liver transplantation: protocol of the retrospective, international, multicentre HEPATIC Registry – PubMed <https://pubmed.ncbi.nlm.nih.gov/38866577/>
Management of hepatic artery thrombosis and stenosis after pediatric liver transplantation: Variability and agreement in management practices – PubMed <https://pubmed.ncbi.nlm.nih.gov/40586698/>
LDLT STUDY
Global variation in living donor liver transplantation practices impacts donor and recipient short-term outcomes: Initial insights from the International LDLT Registry – PubMed <https://pubmed.ncbi.nlm.nih.gov/40252923/>
WEBINAR LINKS
Early, Timely, Ready: The Journey to Paediatric Liver Transplant Candidacy “Early, Timely, Ready:The Journey to Paediatric Liver Transplant Candidacy” – Dr Marisa Rees
Tiny Lives, Tough Calls: Exploring the Myths, Misconceptions & Clinical Imperatives of Paediatric Organ Donation| The Medical Education Network | eLecture
Transplanted: Exploring the Science, Ethics and New Frontiers of Transplant Medicine in South Africa| The Medical Education Network | eLecture
The Paediatric Liver Emergency Liver failure in children
The Jaundiced Child and Approach to Cholestasis The Jaundiced Child and Approach to Cholestasis Meeting Recording
Expanding Access to Paediatric Liver Transplantation “Expanding access to Paediatric Liver Transplantation” – Dr Marisa Beretta
Podcasts
Rare but Real: The Alagille Syndrome Story Healthchat | Rare but Real: The Alagille Syndrome Story – HealthChat | Podcast on Spotify
South Africa makes history: an HIV-positive mom donates her liver – The Mail & Guardian
FAMILY RESOURCES
Websites with resources on liver disease and transplantation:
Children’s Liver Disease Foundation
Pediatric Liver Information Center – American Liver Foundation
Liver – American Liver Foundation
Homepage | American Society of Transplantation
Resources Landing Page – Starzl Network
Transplant Families | Support for pediatric transplant families
Pediatric Liver Transplant Resources | Children’s Hospital Pittsburgh
Your Liver (for Kids) | Nemours KidsHealth
Liver Transplant | Nemours KidsHealth
Books on liver disease and transplantation for children
https://www.childrenshospital.org/sites/default/files/2024-07/transplant-center-liver-prep-book.pdf
https://unos.org/wp-content/uploads/unos/Brochure-113k-What-every-kid-needs-to-know.pdf
Howl Loves His New Liver: Cortez, Brenda E., Contento, Dindo: 9780999360163: Amazon.com: Books
A Transplant For Ivy: Burgess LMSW, Emilie, Raudor, Moran: 9798856756912: Amazon.com: Books
Books on liver disease and transplantation for parents
https://unos.org/wp-content/uploads/unos/WEParentNTK.pdf
Preparing for a Liver Transplant: A Guide for Families
Apps available for children on liver disease and transplantation
https://apps.apple.com/za/app/yellow-alert/id1046536099
https://apps.apple.com/za/app/equiva-health/id1454791202
https://apps.apple.com/za/app/transplantu/id1494355299
https://apps.apple.com/za/app/sierras-journey-to-health/id1377740458
https://apps.apple.com/za/app/jadyns-journey-to-health/id1335756723
Podcasts
Liver transplantation in hepatoblastoma Oncology Buddies, 2 Oct Liver transplantation in hepatoblastoma · Solid Gold Podcasts #BeHeard – iono.fm
Hey Doc Discussing liver transplants in children Hey Doc Feature – 20 January 2026 – Style in the City – Omny.fm
Articles
Dad’s liver gives baby Stella new life
Saving baby Zia from a rare disease – Bhekisisa
Videos for children
What Does The Liver Do? | Liver Functions | The Dr Binocs Show | Peekaboo Kidz
Biliary Atresia (BA) Video for Kids – American Liver Foundation
Liver Patient Education Videos: Video 3 Rejection in liver transplant ENG
Liver Patient Education Videos: Video 2 The Liver English
Videos for adults
What does the liver do? – Emma Bryce
Medical Animation: Living Donor Liver Transplant | Cincinnati Children’s
What, Why and How of Liver Biopsies: Explained | Cincinnati Children’s
Mental Wellness for families and children
Websites & Online Resources
Trusted organisations with information on liver disease and transplantation
Children's Liver Disease Foundation
UK-based charity with excellent resources for families living with childhood liver disease.
Visit → FoundationPediatric Liver Information Center
American Liver Foundation's dedicated pediatric section covering conditions, treatment, and support.
Visit → FoundationAmerican Liver Foundation
Comprehensive patient and family resources covering all aspects of liver health and disease.
Visit → Professional SocietyAmerican Society of Transplantation
Professional resources and patient information from a leading transplant organisation.
Visit → NetworkStarzl Network Resources
Named after the father of liver transplantation — resources for transplant professionals and families.
Visit → Patient ResourceTransplantGo
Practical information for patients and families navigating the transplant process.
Visit → SupportTransplant Families
Peer support and community for families of paediatric transplant recipients worldwide.
Visit → HospitalChildren's Hospital Pittsburgh — Liver Transplant Resources
Paediatric liver transplant resources from one of the world's leading children's transplant centres.
Visit → ChildrenYour Liver (for Kids) — Nemours KidsHealth
Age-appropriate explanations of what the liver does and how to keep it healthy.
Visit → FamiliesLiver Transplant — Nemours KidsHealth
Clear, accessible guide to paediatric liver transplantation for families and children.
Visit →Books for Children
Stories and guides to help young patients understand their journey
The Princess and the Yellow Boy
A gentle story exploring liver disease through the eyes of a child. By Joël Grovender.
Find on Amazon → EducationalRena and Agent Liver
A didactic story about the liver's functions — empowering children with knowledge of their own bodies. By Anjela Sepulveda.
Find on Amazon → StoryLucy's Liver Transplant
A story about organ donation written to help children and families understand the transplant experience. By Lucinda Parker Roberts.
Find on Amazon → StoryHowl Loves His New Liver
A warm story following a character through their liver transplant journey. By Brenda Cortez.
Find on Amazon → StoryMighty Me
A magical journey of courage, love, and strength for young children facing medical challenges. By Analy Navarro.
Find on Amazon → StoryA Transplant for Ivy
A supportive story for children about receiving an organ transplant. By Emilie Burgess LMSW.
Find on Amazon → Series · Ages 8+The Strength of My Scars — Volumes 1–5
Five volumes covering every stage: basics, preparation, surgery, recovery, and transition to independence.
Find on Amazon → GuideYour Transplant Adventure
A kid's guide to organ transplant, designed to make the process feel less frightening and more understandable.
Find on Amazon → Condition-SpecificBiliary Atresia: My Troublesome Tree
From the Strength of My Scars series — specifically for children with biliary atresia and their families.
Find on Amazon → Picture BookTiger Livy
A hardcover picture book about a courageous child navigating liver disease with strength and spirit.
Find on Amazon → Free Download · PDFLiver Transplant Prep Book
Boston Children's Hospital's illustrated guide for young patients and families preparing for transplant.
Download PDF → Free Download · PDFWhat Every Kid Needs to Know
A UNOS brochure explaining organ donation and transplantation in child-friendly language.
Download PDF →Books for Parents & Caregivers
Guides, memoirs, and reference books for families supporting a child through liver disease
What Every Parent Needs to Know
UNOS guide for parents of children on the transplant waiting list — practical and reassuring.
Download PDF → GuidePreparing for a Liver Transplant: A Guide for Families
Comprehensive preparation guide from a leading paediatric transplant centre.
Visit → MemoirThe Real Story of Liver Transplant
A mother's journal of her daughter's fight for life — raw, honest, and deeply human. By Lynn Ritter.
Find on Amazon → ClinicalFighting Until Life: Paediatric Liver Transplants
A clinical and personal account of paediatric liver transplantation. By Vitor Raimundo Martins.
Find on Amazon → ReferenceMayo Clinic Guide to Organ Transplant
Authoritative guide for patients, caregivers, and living donors from the world's leading transplant experts.
Find on Amazon → BOOK · MEDICINE & HEALTH SCIENCEBiliary Atresia: My Troublesome Tree (The Strength of My Scars)
A powerful personal story shedding light on biliary atresia, resilience, and the journey through childhood liver disease and recovery.
Find on Amazon →Apps for Children & Families
Mobile tools to support young patients and their caregivers
Yellow Alert
Helps families recognise signs of jaundice in newborns — crucial for early biliary atresia detection and referral.
App Store → Health ManagementEquiva Health
Helps transplant patients and families track medications, appointments, and overall wellbeing.
App Store → EducationTransplantU
Interactive educational resources for transplant recipients and their families.
App Store → Children · Story AppSierra's Journey to Health
An interactive story app to help children understand and cope with organ transplantation.
App Store → Children · Story AppJadyn's Journey to Health
A companion interactive story app — another child-friendly transplant experience.
App Store →Podcasts
Listen to conversations on liver disease and paediatric transplantation
Liver Transplantation in Hepatoblastoma
A focused clinical discussion on the role of liver transplantation in managing hepatoblastoma in children. 2 October.
Listen → General Audience · Hey Doc · 20 January 2026Discussing Liver Transplants in Children
An accessible, family-friendly conversation about paediatric liver transplantation — what it involves and what to expect.
Listen → RARE DISEASES · HEALTHCHAT · PODCASTRare but Real: The Alagille Syndrome Story
A heartfelt conversation exploring Alagille Syndrome, its challenges, and the realities faced by families navigating this rare condition.
Listen → HEALTH NEWS · MAIL & GUARDIANSouth Africa makes history: an HIV-positive mom donates her liver
A groundbreaking story highlighting a historic liver donation and what it means for transplant medicine in South Africa and beyond.
Listen →Articles & Stories
Real stories of hope and resilience from South Africa and beyond
"A miraculous story for an incredible little boy"
The youngest recipient of a liver transplant in Africa — a remarkable South African story of hope and medical achievement.
Read → SOUTH AFRICA · LIVING DONATIONDad's Liver Gives Baby Stella New Life
A moving account of living related donor liver transplantation — a father's extraordinary gift to his daughter.
Read → SOUTH AFRICA · BHEKISISASaving Baby Zia from a Rare Disease
Following baby Zia's battle with a rare liver condition through the South African healthcare system.
Read →Videos for Children
Animations and child-friendly explanations of the liver and transplantation
What Does the Liver Do?
Fun, engaging animation explaining liver functions for young children.
Watch on YouTube → AMERICAN LIVER FOUNDATIONBiliary Atresia — Video for Kids
A child-friendly explanation of biliary atresia — what it is, how it’s treated, and what transplant means.
Watch → YOUTUBE CHANNELChildren’s Liver Disease Foundation — YouTube
CLDF’s channel with videos covering a wide range of childhood liver conditions and patient experiences.
Watch on YouTube → PATIENT EDUCATION · VIDEO 3Rejection in Liver Transplant
A clear patient education video explaining what rejection means and how to recognise and manage it.
Watch on YouTube → PATIENT EDUCATION · VIDEO 2The Liver — Patient Education
A foundational patient education video explaining the liver’s role in the body for children and families.
Watch on YouTube →Videos for Adults & Caregivers
In-depth explanations for parents, caregivers, and adult patients
What Does the Liver Do? — Emma Bryce
An elegant TED-Ed explainer on liver function — a great starting point for adults wanting to understand the basics.
Watch on YouTube → CLINICALPortal Hypertension Explained
A clear clinical explanation of portal hypertension — one of the most significant complications of chronic liver disease in children.
Search YouTube → SURGICAL ANIMATION · CINCINNATI CHILDREN'SLiving Donor Liver Transplant
A detailed medical animation of the living donor liver transplant procedure — invaluable for families considering this option.
Watch on YouTube → PROCEDURE GUIDE · CINCINNATI CHILDREN'SWhat, Why and How of Liver Biopsies
Demystifying the liver biopsy — what happens, why it’s needed, and what to expect before, during, and after.
Watch on YouTube →Healthcare Professional Resources
Clinical lectures, webinars, and educational resources for healthcare professionals in paediatric liver transplantation
Early, Timely, Ready: The Journey to Paediatric Liver Transplant Candidacy
Dr Marisa Rees explores the critical stages of paediatric liver transplant candidacy, emphasizing early referral, timely intervention, and preparation for successful outcomes.
Watch now → E-LECTURETiny Lives, Tough Calls: Exploring the Myths, Misconceptions & Clinical Imperatives of Paediatric Organ Donation
An insightful discussion unpacking the realities of paediatric organ donation, addressing common misconceptions, and highlighting key clinical considerations.
Watch now → E-LECTURETransplanted: Exploring the Science, Ethics and New Frontiers of Transplant Medicine in South Africa
A deep dive into the evolving science of transplantation, ethical challenges, and advances shaping transplant medicine in South Africa.
Watch now → CLINICAL EDUCATIONThe Paediatric Liver Emergency
An important resource focusing on liver failure in children, urgent clinical presentation, and emergency management approaches.
Watch now → MEETING RECORDINGThe Jaundiced Child and Approach to Cholestasis
A practical guide to assessing jaundice in children and understanding the clinical pathway for diagnosing and managing cholestasis.
Watch now → WEBINARExpanding Access to Paediatric Liver Transplantation
Dr Marisa Beretta discusses strategies, challenges, and opportunities for improving access to paediatric liver transplantation.
Watch now →Mental Wellness & Support
Because caring for the whole child — and the whole family — matters as much as the medical journey
Pressing On
A support community for transplant families — sharing stories, strength, and solidarity through the hardest moments.
Visit → PARENT COMMUNITYLiverMommas
A peer community for mothers of children with liver disease — real support from people who truly understand.
Visit → CHILDREN · MOVEMENT & MINDFULNESSCosmic Kids Yoga
Positive screen time — yoga, mindfulness, and relaxation for children, including those managing chronic illness.
Visit → PROFESSIONAL RESOURCE · CHOPChild & Adolescent Psychiatry and Behavioural Sciences
Curated mental health resources for children with chronic illness and their families.
Visit →Publications
Key publications, case reports, and clinical experiences in paediatric liver transplantation and hepatology
The Paediatric Liver Transplant Experience in Johannesburg, South Africa
A broad overview and update on paediatric liver transplantation practices, challenges, and outcomes in Johannesburg.
Read publication → PUBMED · ACUTE LIVER FAILUREMinding the Gap: Providing Quality Transplant Care for South African Children
An exploration of improving transplant care for children facing acute liver failure in South Africa.
Read publication → PUBMED · ABO-INCOMPATIBLEABO-Incompatible Liver Transplantation
A Johannesburg-based single-centre experience addressing restricted access and organ shortages through ABO-incompatible transplantation.
Read publication → PUBMED · AFRICA FIRSTHyperreduced Left Lateral Living Donor Liver Transplant in a 4.5 kg Child
A landmark case describing Africa’s first hyperreduced left lateral living donor liver transplant.
Read publication → WILEY · FEATURED COVERFeatured Cover – Pediatric Transplantation
A featured publication highlighting significant contributions in paediatric transplantation research.
Read publication → PUBMED · CASE REPORTSuccessful ABO-Incompatible Living Donor Liver Transplant in a Child
A case report of successful transplantation for acute liver failure secondary to Hodgkin’s Lymphoma.
Read publication → PMC · HIV TRANSPLANTLiving Donor Liver Transplant from an HIV-Positive Mother
A groundbreaking report opening new therapeutic options through HIV-positive to HIV-negative transplantation.
Read publication → WITS · DATA REPORTAdult and Paediatric Liver Transplantation: Wits Transplant Data 2020
A detailed report of adult and paediatric transplant data from the Wits transplant programme.
Read publication → WITS · ANNUAL REPORTWits Transplant Annual Data Report 2018
Annual data insights into adult and paediatric liver transplantation outcomes and trends.
Read publication → WILEY · CASE REPORTCryptogenic Cirrhosis and Hepatopulmonary Syndrome in Botswana
A rare case report and literature review of hepatic hemangioma linked to severe liver disease in a child.
Read publication →GALA Study
International research focused on Alagille syndrome, disease progression, treatment outcomes, and growth patterns in children
Natural History of Liver Disease in a Large International Cohort of Children with Alagille Syndrome
Results from the GALA study examining the progression and long-term outcomes of liver disease in children with Alagille syndrome across an international cohort.
Read study → RESEARCH · PUBMEDEvent-Free Survival of Maralixibat-Treated Patients with Alagille Syndrome
A comparative study assessing event-free survival in maralixibat-treated patients against real-world data from the GALA registry.
Read study → RESEARCH · JAMACondition-Specific Growth Charts for Children With Alagille Syndrome
A landmark study introducing tailored growth charts for children with Alagille syndrome to improve monitoring and clinical decision-making.
Read study → RESEARCH · PUBMEDElevated Serum Bile Acids Predict Poor Liver Outcomes in Children With Alagille Syndrome
Findings from the GALA Study Group highlighting the role of elevated bile acids as a predictor of poor liver outcomes in children with Alagille syndrome.
Read study →LDLT Study
Research and global insights into living donor liver transplantation practices and outcomes
Portal Study
International research focused on portal vein complications and management after paediatric liver transplantation
Prevalence, Management and Efficacy of Treatment in Portal Vein Obstruction After Paediatric Liver Transplantation
A retrospective international multicentre PORTAL registry protocol investigating the prevalence, management strategies, and treatment outcomes of portal vein obstruction after paediatric liver transplantation.
Read study → RESEARCH · PMCPortal Vein Obstruction in Pediatric Liver Transplant Patients
An evaluation of self-reported clinical management practices, highlighting current approaches and challenges in treating portal vein obstruction in paediatric transplant patients.
Read study → RESEARCH · PUBMEDIncidence and Risk Factors for Portal Vein Complications After Pediatric Liver Transplantation
A retrospective cohort analysis from the PORTAL registry identifying incidence rates and risk factors associated with portal vein complications after paediatric liver transplantation.
Read study →Hepatic Study
International research focused on hepatic artery complications after paediatric liver transplantation
Incidence, Management and Outcomes in Hepatic Artery Complications After Paediatric Liver Transplantation
A retrospective, international multicentre HEPATIC Registry protocol investigating the incidence, treatment strategies, and outcomes of hepatic artery complications following paediatric liver transplantation.
Read study → RESEARCH · PUBMEDManagement of Hepatic Artery Thrombosis and Stenosis After Pediatric Liver Transplantation
An international review exploring variability and agreement in clinical management practices for hepatic artery thrombosis and stenosis after paediatric liver transplantation.
Read study →