Even after a child is treated for severe combined immunodeficiency and has a functioning immune system, ensuring good health for the child during school-age years requires diligence. Parents must maintain connections with the medical team and build relationships with school staff.
In a 2-minute animated video, entitled “Planning for the Future," parents learn basic steps to take as part of follow-up for their child. The video, created by SCID Compass partner Genetic Alliance’s Expecting Health, follows Liam Fisher, treated for SCID as a baby, as he grows up.
The video stresses that even though Liam has developed a healthy functioning immune system, he must be taken to annually scheduled appointments with the pediatrician, transplant team, and immunologist to monitor his health.
Liam’s parents also work to ensure that Liam stays healthy at school. The Fishers discuss Liam’s health condition with educators and set up a plan to keep him healthy. As part of that plan, teachers disinfect desks every day and notify the Fishers of any outbreaks of sickness such as chickenpox or the flu.
The video is the sixth in a series designed to provide parents with brief overviews of stages in the SCID journey. In addition to the “Planning for the Future” video, other videos in the series include “Understanding SCID,” “Exploring Treatment Options,” Navigating Hospital Stay,” “Coping with Post-Treatment,” and “Returning Home.”
To view the video, click here.