Successful newborn sickle cell trait counseling program using health department nurses

Abstract

Every year more than 50,000 infants with sickle cell trait are identified through newborn screening programs. An infant with trait provides a "genetic window" into a family that may be at risk for having a child with sickle cell disease. No national standards have been established for newborn trait follow-up and family counseling. In the United States, counseling to families having an infant with trait is usually very limited in scope and, in many cases, nonexistent. In West Tennessee, the Mid-South Sickle Cell Center (MSSCC) and the Department of Health have jointly developed an effective, practical, and affordable trait counseling program. A five-step counseling protocol, an accompanying counseling manual, a documentation checklist, and a fact sheet for parents were developed to support trait counselling. By training and using health department nurses, this program has provided counseling to a large percentage of families in which an infant tests positive for sickle cell trait.