The Tracheal service parent support group
In 2012, Lisa, a parent of a child with long segment tracheal stenosis (LSTS) who was treated at Great Ormond Street Hospital (GOSH), set up a Facebook support group.
Other than on the GOSH website, Lisa did not have much luck finding information on the Internet about her son’s condition, and wanted to find out about what kind of issues and complications other children with LSTS had.
The LSTS Facebook group includes parents of many children treated at GOSH as well as families from abroad.
Lisa says that the group is a place for parents to 'vent their worries and questions' with other families who have been through similar experiences.
Parents also offer tips and solutions to common problems, such as feeding, scars and expectations for the future, and to update each other on how their children are getting on as they get older.
Although the LSTS Facebook group is a great opportunity to share stories, it is not able to support parents with clinical knowledge. The Tracheal team at GOSH are available for more expert clinical support.
The Facebook group is kept private with only ‘friends’ of the group allowed to view the contents. To join the group, please send a request via Facebook to Lisa, who will then personally approve you as a member.