This information from Great Ormond Street Hospital (GOSH) is for parents of children and young people undergoing assessment for possible lung or heart-lung transplantation. A transplant is a serious operation and is not without risk. A transplant can be the only effective treatment option for certain serious lung diseases; however, it is not a cure. In many situations transplantation can lead to an extension of life with improved quality.
This guideline is intended to supplement the resources found in the 'When a Child Dies' (WACD) purple box located in every ward, which gives detailed information on the care of a child after death and, additionally, the ongoing care and attention that the child's family will require (Rationale 1).
Researchers from the UCL Great Ormond Street Institute of Child Health have discovered a new gene change that identifies a type of the movement disorder, muscle dystonia. This new discovery will allow doctors to more easily identify patients who can benefit from treatment so effective that it can restore the ability to walk.