Why some SCD patients give birth to children with the disease

While I’ve been a sickle cell disease (SCD) advocate for more than two decades, I only seriously committed to this work after experiencing one of my worst complications: a case of avascular necrosis, which causes the death of blood tissue. It left me bedridden for over a year. During that challenging period, I felt a deep yearning to learn more, read more, teach more, and research more about my disease.

I’ve long prioritized SCD prevention while also supporting research to find a cure. But one of the major reasons I went into advocacy was to combat the high level of ignorance about the disease.

Over the years, this education and advocacy have brought me immense happiness and fulfillment, although I’ve faced a few rude shocks along the way. The first of those occurred in 2019, after I joined several SCD communities that introduced me to more sickle cell warriors and their realities.

I’d initially assumed disease ignorance was limited to members of the public who weren’t living with SCD. Instead, I learned that some sickle cell patients knowingly choose to have children with partners of incompatible genotypes, heedless of the consequences.

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When I initially learned that some sickle cell patients have children with the disease, I was taken aback and judgmental. I thought it was unfair to intentionally pass SCD along to a child, given that such transmission can be prevented. I felt these parents were being selfish and mean to their unborn children because they were knowingly subjecting them to a difficult life — even though those same parents knew what sickle cell can do.

As I encountered more cases, I gained a deeper understanding of the complexities. I’ve seen instances where sickle cell patients were deceived. In one case, a partner knowingly hid his AS genotype (which causes sickle cell) and claimed to be AA (which doesn’t) because he didn’t want a breakup. Such a betrayal can have severe consequences; in the most heartbreaking example, some of these deceptive partners end up abandoning their wives if they give birth to a child with SCD, leaving her to care for the diseased child alone.

Misdiagnosis also can cause children to be born with sickle cell. In these cases, responsible parents-to-be undergo genotype testing before having children, yet they receive incorrect reports — resulting in some having children with sickle cell.

Additionally, the presence of the beta thalassemia trait can complicate an SCD diagnosis. The hemoglobin electrophoresis test, commonly performed in many African countries, does not diagnose thalassemia, even though that can misclassify people with the beta thalassemia trait as having the AA genotype. Consequently, if a person with an AS or SS genotype, which causes the more severe form of the disease, has a child with someone who has an undiagnosed beta thalassemia trait, they can end up having children with sickle cell disease.

Another significant factor is that some people living with sickle cell disease prioritize their emotional needs and desire for love and companionship over the potential health risks for their unborn child.

Making informed choices

At first, I couldn’t understood why any sickle cell patient would do that to a child. Now, however, I’ve undergone a subtle shift in that perspective. The disease can be incredibly isolating, leading some warriors to seek love and companionship regardless of the consequences. While I’m strong enough to sacrifice my own happiness to prevent an increase in the SCD population, I recognize that not everyone shares that strength. Plus, it’s not a crime to desire fulfillment.

I’ve concluded that everyone deserves happiness, even though I don’t support anyone contributing to the rising incidence of sickle cell disease. That’s because I believe it’s crucial that we consider the well-being of our unborn children and make informed choices for their health.

There’s good news: Medical advancements have made it possible for people with incompatible genotypes to have children without sickle cell disease. Options include preimplantation genetic testing for in vitro fertilization, which involves testing embryos for sickle cell before implantation, and adoption. Tests that can be done to diagnose SCD in the fetus during early pregnancy include chorionic villus sampling, which detects abnormalities, and amniocentesis, which samples amniotic fluid to detect the DNA.

If these options aren’t feasible or affordable, you might consider not having children or finding a partner with a compatible genotype. Caring for a child with sickle cell can be extremely stressful, especially when parents also have the disease. Don’t play with fire!

In conclusion, let’s join hands together to rid the world of sickle cell disease. By making informed choices, SCD can be eradicated, and by leveraging medical advancements, we can create a better future for those affected by the disease. Every child deserves a healthy start in life, and it’s our responsibility to ensure they receive the best possible care.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.