A Nigerian Couple shared how they live and raise three children with Sickle cell disease. The mother narrating her ordeal said; “I happen to have children affected by Sickle cell disease and out of my five children three were affected.”
“Sometime last year I lost one, it wasn’t that I knew I’m AS and he was also AS and got married that was not the case.”
In a world where love knows no bounds sometimes the greatest battles are fought not against Society but within our own very blood.
“I had always thought that I am AA until the diagnosis came when my daughter was about 2 years or there about and I was told that she was SS so I didn’t believe it I had to go around to confirm the the genotype that was how it all started.”
The AS genotype is not just a letter on a medical chart, it carries the weight of decisions that can alter lives.
“It’s one of those routine as a nursing student to get your genotype done and some other request, so while I was a student NSE I did my genotype and I was told I am AA not only me I did several other test because I had nail infection at the time so I ran several other tests apart from the genotype so and I was told that I am AA so I believed on that.”
“When I went for midre I wanted to repeat it but the Regent was not available and I didn’t bother to go further until I had my second child and the doctor said I should go for genotype and when it came out she was said to be AS so I didn’t believe it until I had to go several places to get the test done.”
“Then I already had another child this particular one that died I already had her before I confirmed their status so it wasn’t that I knew I’m ear and he was also a and got married that was not the case but I was told that I am AA along with my fellow students who went into nursing at the time.”
For many, love overcame the odds but the price they paid was higher than they ever imagined.
So sickle cell disease is more than just a diagnosis it is a life sentence for the child and a lifelong battle for the parents taking care of one. SS is a big problem then having up to three is a disaster uh in uh our own Society in society they see it as a punishment from God and they don’t you don’t blame them because that is that is how far they can take them.
“It is time consuming okay it’s energy consuming and it’s money consuming and it puts you in a Perpetual fear.”
“Perpetual psychological tension that you can lose any of them or even lose all of them so that is a big psychological predicament that I have been facing as you were told before we lost one last year 2 days after graduation and those that we are lucky”.
“It’s draining and it can affect the relationship somehow because you just feel at some point you don’t know how to how to put it that is staining the relationship some kind some somehow but if it is not for understanding you would have gone apart with proper counseling and informed decisions many of these stories could have a different ending .”
“The regret I have is we should have done the genotype test uh before going into the marriage”.
