Abstract

Parenteral nutrition has transformed the outlook for patients with intestinal failure, but is associated with serious long-term complications, including catheter-related blood stream infection, liver disease and loss of venous access. Risks can be significantly reduced by strict adherence to management regimens, such as catheter-care protocols, but intestinal transplantation is indicated when complications threaten survival. The responsibility of home parenteral nutrition as an alternative to long-term hospitalisation is welcomed by many parents, but represents a huge burden of care that sometimes proves beyond their capacity. We report two children with recurrent life-threatening central venous catheter infections who were removed from the intestinal transplant list following virtual cessation of infective episodes after going into foster care. These cases raise important issues about the level of family support offered, the role of non-compliance with treatment routines in relation to risk of complications, and how this should be assessed and monitored.