What I’ve Learned From My Family’s Experience With Sickle Cell Disease

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by Mary Shaniqua |

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In recent columns, I have written about why knowing your genotype is imperative when planning a family, as well as the steps to take to avoid having children with sickle cell disease. But for some, these simply are not options. Particularly for those already married, they may have learned that they had sickle cell trait upon giving birth or being pregnant with a baby with sickle cell disease.

My family was in this exact situation. When my parents married, neither of them knew what sickle cell trait was or that they both had it. Their first child, my older brother, was a healthy baby. Then they had me, and although I cried a lot, as a baby there was nothing to suggest I was unwell.

When I reached 18 months, one day I stopped walking for what appeared to be no apparent reason. My dad took me to the hospital, where I was diagnosed with sickle cell disease. This was when my parents found out that I was probably crying so much as a baby because I was, unbeknownst to them, in crisis.

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The realization that both my parents were sickle cell carriers did not hinder them from growing the family, and they went on to have both of my younger sisters, neither of whom have sickle cell disease.

My family is the exact illustration one often sees in diagrams showing how sickle cell is inherited. Both of my parents have the trait. They have four children — one with normal blood, two with sickle cell trait, and one with sickle cell disease.

Times have changed in terms of identifying and diagnosing sickle cell, especially here in the U.K. So hopefully, few people will find themselves in the same situation as my parents. As I understand it, nowadays, all babies born in the U.K. are screened for myriad illnesses, including sickle cell.

My faith is of the utmost importance to me, so once in the above-mentioned scenario, options such as abortion or divorce are not something I personally would consider. But I also probably would have made a different choice than my parents about growing the family after the sickle cell gene had been identified. Admittedly, I’m glad they did what they did, because otherwise I wouldn’t have my sisters!

I believe all children are blessings, but the potential strain on a family cannot be understated. My own diagnosis has been, and continues to be, a strain on my family, even in my adult life. They will never admit it, but I can see it. My diagnosis creeps into all aspects of family life.

Just because I would or would not do something doesn’t necessarily mean it is the right thing for everyone. I appreciate that everyone has the freedom to make whatever choices they feel are right for their own families.

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.


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