To:         Healthcare Providers, Nurse Managers and Others Involved in the Care of Infants

From:     Ellie Mulcahy, RNC, Director, Maine CDC Genetics Program/Newborn Bloodspot Screening

Re:         Maine to begin screening newborns for life threatening disorder, Severe Combined

Immuno-Deficiency (SCID) beginning August 1, 2014.

Date:      July 2014

   The Maine CDC Newborn Bloodspot Screening Program partners with health care practitioners to screen all newborns for causes of cognitive disabilities, serious illness and selected genetic conditions. Each year 20-25 babies are identified with treatable disorders in Maine. August 1, 2014, Maine babies will be tested for 33 disorders, including Severe Combined Immuno-Deficiency (SCID).

   Severe Combined Immuno-Deficiency is a primary immune deficiency that occurs in about one in every 50,000-100,000 births. SCID is treatable.

   Babies with SCID have a defect in their B-cells and T-cells, which are white blood cells that fight infections. Without these special cells, babies appear healthy at birth but are much more susceptible to illness. Without treatment, most children with SCID die of infections before the age of two. However, with early detection and treatment, which is usually a bone marrow transplant, the survival rate is high. With approximately 12,500 births each year in Maine, we expect to identify one baby with SCID every 4-5 years. There will be babies identified with other serious immune system disorders that will also benefit from early detection and treatment as a result of the added screening test.

   Pediatric Grand Rounds presentations are scheduled at Maine Medical Center on Sept 4 and Eastern Maine Medical Center on Sept 11.

More information will be available soon at www.mainepublichealth.gov/bloodspot. Sample reporting materials, fact sheets, SCID Flow Cytometry referral form and family fact sheets will be available.