Those parents feeling overwhelmed after learning their baby has severe combined immunodeficiency (SCID), a life-threatening PI in which a baby is born without a functioning immune system, may find some comfort and clarity by watching a simple but informative video describing the process of SCID diagnosis.
Posted on the SCID Compass website, the animated video explains the story of the Fisher family, who just welcomed baby Liam into the world. Newborn screening shows an abnormality in Liam’s T cell count and doctors subsequently diagnose him with SCID. Baby Liam moves into isolation at the hospital to ensure he is protected from germs. The video ends on a hopeful note.
“Liam and his family may be in isolation, but they are not alone. The SCID community, along with SCID Compass, provides resources and support to families just like the Fishers who are navigating a SCID diagnosis,” says the narrator. “Finding out your child has SCID is scary, but with the right information and support your journey with SCID can be manageable.”
The 2-minute video, created by SCID Compass partner Genetic Alliance Expecting Health, presents technical topics in an easy-to-understand and straightforward manner. Key points covered include:
- An overview of newborn screening
- How low numbers of T cells constitute an abnormal NBS
- The role of T cells in immune system function
- An explanation of SCID
- The importance of isolation after being diagnosed with SCID
This is the first in a series of videos that Genetic Alliance intends to create for the SCID Compass website. Each video will focus on a different part of the SCID journey, including diagnosis, treatment, recovery, and returning home.
Genetic Alliance Expecting Health is a program designed to inform families about newborn screening, as well as screening and diagnostic test options for genetic conditions.