Introduction: Biliary Atresia (BA) is the commonest indication for liver transplantation in children. BA is a rare disease of the liver and bile ducts that occurs in newborns.
We report the case of a long and complicated post-transplant journey and some of the challenges that were overcome, including many ethical dilemmas involved in caring for a critically unwell child.
Case report: A one year old boy with syndromic BA (including situs inversus with dextrocardia) had a failed Kasai procedure and proceeded to liver transplantation. He received a split graft from a deceased ABO compatible donor, with uneventful surgery and a stable post-transplant ICU period.
Day 9 post-transplant he developed severe acute haemolysis, direct antiglobulin (DAT) positive, thought to be caused by passenger lymphocyte syndrome. Subsequent cytokine storm led to multi-organ failure, requiring VA-ECMO for 3 weeks and renal replacement therapy (CVVH) for 15 months. 
He remained in ICU receiving complex critical care from numerous medical, nursing and allied health teams. End stage renal failure developed, and after 6 months of CVVH he was assessed for renal transplantation but initially was deemed ineligible, due to poor cardiac function, recurrent episodes of sepsis, low body weight and anticipation of limited life expectancy.  
After much discussion, advocacy, improvement of cardiac function and weight gain he received a successful kidney transplant 15 months after commencing CVVH and was eventually discharged from hospital after 520 days, of which 505 were spent in ICU.
This complex case involved numerous medical, nursing and allied health professionals. Challenges faced by staff included differing opinions on appropriate treatments, ceilings of care, moral and ethical distress, family expectations and opinions on continuation of care. There was discord amongst colleagues which required respectful dialogue and careful managing.
Conclusion: The outcome for this child and his family was a successful liver and kidney transplant, despite sequalae of critical illness and a long hospitalisation in PICU .
Many lessons were learnt by the teams involved in the care of this child, the barriers and challenges that were faced, striving to allow him to live a normal life outside of hospital.