PI: Morna Dorsey
Collaborators: Mort Cowan, Christina Mangurian
Health Delivery System Partner: UCSF Health

Rare immunodeficiency disorders at birth require bone marrow transplantation. For example, Severe Combined Immunodeficiency Disease (SCID) is a condition where patients are born with genetic abnormalities making them susceptible to serious, life-threatening infections. In California, the SCID newborn screening program identifies patients before the onset of infection, and these patients are immediately hospitalized with the goal of curative bone marrow transplantation. This takes place within 2-3 weeks of birth and patients remain in the hospital for 6 months or longer. The hospitalization period is a frightening and uncertain time for parents and families. Our study looks at whether parents experience stress and depression as their child is diagnosed and treated for SCID. By administering a series of surveys, we aim to assess postpartum depression, PTSD, caregiver burden, caregiver resilience, and post-traumatic growth in parents at different time intervals. This is the first study where parents of newborn-screened SCID patients will be evaluated for psychological trauma, and we plan to enroll 15 families. The goal is to gain preliminary data on the psychosocial impacts of SCID on families, with the hopes of using this information to provide programs and services to reduce stress for parents and families in the future.