Frustrations of Parents/ Guardians of Children Living with Sickle Cell Disease: A Case Series

Abstract

Aim: To present some frustrations and problems parents/guardians of children living with Sickle Cell Disease go through. Presentation of Reports: We present series of cases of parents and guardians whose children are less than fourteen (14) years of age and have sickle cell disease (SCD). In two of such cases the parents wished that their wards were dead to relieve them (the parents) of the challenges they go through to take care of the children. In the third report, the husband divorced the wife, blaming her for the plight of their two children; and the final one presents a couple who contemplated withdrawing their wards from school, so they would not have to spend money to educate them and lose them eventually to death. Discussion: The case series give clear indications of the challenges guardians with children living with SCD go through. The disease which is hereditary affects the haemoglobin of the red blood cells, making the cells sickle-shaped. The clinical hallmarks of frequent infection, bone-pain crisis, anaemia, fatigue, organ failure and many other symptoms associated with the condition lead to frequent hospitalization. This is where the frustrations of the parents come from. With proper management of the condition and education to the guardians, SCD patients can go through normal life and the guardians can also have relative peace of mind to support such children. Conclusion: Individuals who are carriers of the sickle cell traits should be discouraged from getting married to other carriers; and if they do, they should be cautioned about the challenges they stand to face if they decide to have children. By doing this, perpetuation of this condition and its attendant problems may be reduced. Newborn babies should be tested for the condition and proper management given from the onset to minimize crisis.