Nigeria has the highest number of children born with sickle cell disease globally, with one in four Nigerians carrying the gene. A simple blood test costing approximately two thousand naira can determine whether a couple's children are at risk. However, many couples are skipping, hiding, or discovering the test too late. This has led to numerous cases of children being born with the condition, resulting in a lifetime of painful crises.
Sickle cell disease is a genetic condition where red blood cells are shaped like a crescent or sickle, causing them to clump together and block blood flow to organs and tissues. This results in excruciating pain, often in the bones, chest, and abdomen, and can lead to damage to the heart, lungs, kidneys, liver, spleen, and brain. Children with sickle cell disease are at high risk of stroke, serious infections, and severe anemia.
Understanding genotype is crucial before marriage, as it determines the risk of passing on the condition to children. The genotypes are AA (normal), AS (carrier), SS (sickle cell disease), AC (carrier of the hemoglobin C trait), and SC (sickle cell disease variant). A genotype test can identify which of these an individual is, and it is essential for couples to know their genotype before getting married.
When both partners are AS, there is a 25 percent chance that their child could be born with SS sickle cell disease. This risk applies to every pregnancy, independently of previous results. A 2024 systematic review and meta-analysis found that 21 percent of Nigerians carry the AS genotype, and 4 percent of Nigerian children have full sickle cell disease.
Researchers and healthcare workers have documented several reasons why couples avoid the genotype conversation. These include timing, as most couples do not test before they are emotionally invested in their relationship. Faith also plays a role, as some couples trust that God will protect their children. Stigma and social pressure around genotype compatibility also contribute to the avoidance of the conversation.
A 2023 Lagos study found that only 42.9 percent of young unmarried adults knew their own genotype, despite 92.4 percent believing that genotype testing before marriage is important. In rural Katsina, 73 percent had little or no knowledge of their genotype. This lack of awareness contributes to the high number of children being born with sickle cell disease.
The conversation about genotype is essential to prevent sickle cell disease, and it is crucial for couples to know their genotype before getting married. A growing number of couples are finding their way to genetic counselors and exploring options they did not know existed. By having this conversation, couples can make informed decisions about their reproductive health and prevent their children from being born with a lifetime of painful crises.
Key points
- Nigeria has the highest burden of sickle cell disease globally, with one in four Nigerians carrying the gene.
- A simple blood test costing approximately two thousand naira can determine whether a couple's children are at risk of sickle cell disease.
- The conversation about genotype is essential to prevent sickle cell disease, and it is crucial for couples to know their genotype before getting married.
