Children with liver disease, and those who undergo liver transplantation, are at significant risk of developmental deficits across all areas; motor, cognitive, language and behaviour. Early childhood adversity may have an impact on the developing brain with lasting consequences throughout childhood and into adulthood. With improved survival rates following liver transplantation in the paediatric population the emphasis is on children ‘not only surviving but thriving’, with focus on quality of life, functional abilities and social/emotional wellbeing for these children. The wider multi-disciplinary team, such as Physiotherapy, Occupational Therapy and Speech and Language Therapy have an important role in optimising functional abilities. Here we present 2 children with biliary atresia, a progressive fibro-obliterative cholangiopathy of infancy that frequently leads to end-stage chronic liver disease and liver transplantation. They were assessed by physiotherapy before and after liver transplantation.

Child A was assessed at 5.5 months (PELD score 33.1). Weight and length z-score was -2.68 and -2.35 respectively. He had gross motor developmental delay; had not developed head control, or intermittent sitting balance and had difficulty with transitioning. Progressing well in social and fine motor aspects of development. The parents were given advice in regards to adapting tummy time to help with strengthening and help to develop head control and in how to promote transition between positions. He was transplanted at the age of 8 months after a period of steady deterioration. Post-transplant he stayed in hospital for 46 days, 16 of these he was intubated. Post-transplant he had a portal vein thrombosis and recently post-transplant lymphoproliferative disease requiring chemotherapy. He is now 13 months old, is sitting unsupported but not pulling to stand or walking.

Child B was assessed at 11 months (PELD 13.5, weight and length z-score -0.42 and 0.41respectively) and found to have mild gross motor delay with no concerns about fine motor, cognition and language. He was unable to sit in a high chair due to poor sitting balance. A referral was made to local community therapy. At 16 months (PELD 13, weight and length z-score 0.7 and 0.74 respectively) developmental progress in all areas of development was noted, but still had global developmental delay, predominantly gross motor; not yet pulling to stand or furniture walking. He had good transitioning to crawling, and crawling ability. Following liver transplant at 17 months of age, he stayed in hospital for 23 days, only 2 days in critical care. After transplant he had 2 episodes of mild rejection.He received therapy input in the acute recovery phase and on discharge at 17.5 months he had regained his baseline developmental skills.

These two cases illustrate how advanced liver disease impacts development and outcomes after liver transplant. Adult data is supporting the role of pre-habilitation whilst waiting for transplant. Assessing these children early and systematically and using a multi-therapy approach may have a significant role in supporting them and their families both pre and post-transplant. A period of bespoke pre-habilitation whilst awaiting transplant can help optimise developmental and functional outcomes.