Down Syndrome in Uganda

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In a developing country such as Uganda, there is minimal awareness or appreciation of Down syndrome, even though there is a projected rise in the number of children being born with the genetic malformation.

Overview

Comparisons show that there has been a decline in the prevalence of Down syndrome in developed populations, however, remains stagnant in developing populations (Molteno, et. al., 1997). Prevalence is based on actual populations, whereas incidence is based on annual total births, and thus there is a fundamental difference in these statistical inferences (Adeyokunnu, 1982). Possible sources of a higher prevalence rate of Down syndrome in developing countries, such as Uganda, include lower quality prenatal diagnosis services, increased maternal age due to emphasis on continued higher education, and an increased Down syndrome child mortality rate due to lack of access to healthcare facilities or treatments to manage congenital heart defects, such as atrioventricular defects, ventricular septal defects, congestive cardiac failure, and cyanosis (Arthur, 1995). For example, in Nigeria, the maternal age at which women conceive is increasing due to the completion of formal education, and simultaneously, the rates of Down syndrome are increasing (Oloyede and Osagie, 2003). Even though studies suggest an increase in the rate of Down syndrome in developing countries, no Ugandan specific reports have been written with accurate data, and there has been no increased education regarding the disability. Obtaining accurate data on the prevalence and incidence of Down syndrome in Uganda is difficult, primarily for two key reasons. Firstly, an expansive number of deliveries occur in non-traditional health centers, such as birthing homes or religious centers; such Institutions typically do not keep records of births or formal statistics of children born with disabilities.

Even local community clinics or government maternity centers have difficulty maintaining accurate records (Oladokun et. al., 2011). Simultaneously, a portion of health workers or midwiferies have not been formally trained to identify Down syndrome, and subsequently, the newborn isn’t diagnosed with the congenital malformation until childhood. Secondly, sociocultural factors impact the registration of children with Down syndrome, due to traditional beliefs throughout Uganda. Parents, families, and communities alike continue to associate Down syndrome with witchcraft and curses (Oloyede, 2005). Throughout local communities in Uganda, it is commonly believed that a child born with Down syndrome is a result of maternal misdeeds, or that the child is connected with the evil world (Tompkins, 1964).

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