Reproductive decisions in people with sickle cell disease or sickle cell trait

Abstract

In the context of an inherited condition such as sickle cell disease (SCD), it is critical to understand how people with SCD or carriers (sickle cell trait [SCT]) face the challenges of making informed reproductive health decisions. The purpose of this analysis was to examine the beliefs, attitudes, and personal feelings of people with sickle cell disease or sickle cell trait related to making informed reproductive health decisions. Three focus groups were conducted with a total of 15 people who had either SCD or SCT. Five themes were identified: health-related issues in sickle cell disease, testing for sickle cell trait, partner choice, sharing sickle cell status with partners, and reproductive options. These findings enhance understanding of the reproductive experiences in people with SCD and SCT and provide the groundwork for developing an educational intervention focused on making informed decisions about becoming a parent.

Figure 1

Example of a Punnett Square probability for a couple at risk for a child with SCD and other hemoglobin variants (X). If both parents have SCT (AS), or if one parent has SCT and the other parent has another hemoglobinopathy trait (AX), then with each pregnancy, there is a 25 percent chance (1 in 4) that the child will have SCD (SS) or a SCD variant (SX), 25 percent chance (1 in 4) that the child will have normal hemoglobin (AA), and 50% chance (1 in 2) that the child will be a hemoglobinopathy carrier (AS or AX). A = normal hemoglobin; S = sickle cell hemoglobin, X = hemoglobin variant (e.g., C, β^o-thal, β⁺-thal). Adapted from http://www.ctbiobus.org/TestSite/BioBus/download/punnet.pdf