Many parents of children diagnosed with SCID report that they felt numb and overwhelmed in the beginning. Parents are still trying to process what SCID is and at the same time work with specialists, hospital social workers, and other medical staff to create a treatment plan.

Parents may be inclined to not want to communicate with family members or friends about the diagnosis. It’s difficult to share the news that a newborn baby has a life-threatening condition, particularly when the baby may appear healthy. SCID can also be a complicated medical condition to explain and parents don’t feel knowledgeable enough to share it with others.

While some parents may not want to reach out to family or friends, all parents should consider making connections with other families whose children have SCID. Reaching out to other families provides insight and support not available through any other source. Only families whose children are coping with SCID can fully understand the experience.