For people born with the AS genotype, it is drummed into their heads from a very young age to avoid getting entangled with anybody also with the AS genotype, for fear of conceiving a child with the SS genotype, commonly referred to as sickle cell anaemia. This warning is usually solidified by watching the pains and suffering of real life people with this SS genotype (whom we crudely refer to as sicklers), of whom these AS kids would almost surely know at least 1. In my case, watching some of my Primary Schoolmates and family friends moan and writhe in pain, forever in and out of hospital, was enough to scare me to my bones. Having some of them actually die made me conclude that this was, indeed, a deadly disease.
You see, as early as the age of 8, I knew I had the AS genotype. So practically all my life, I told anyone who cared to listen how I would most surely never end up with anyone with the AS genotype. And for the early part of my dating life, I was lucky not to encounter any man with it. But when I turned 23, I met someone who swept me off my feet. We fell hard in love so fast, there was barely time to think of anything else. By the time we found out we had the AS genotype, it was too late. We were too far gone, and breaking up was not an option. We were soon engaged, much to the chagrin of our fathers (our mothers were more sympathetic). For us, the option of prenatal diagnosis wasn’t to be considered. As Catholics, the thought of having to terminate a pregnancy, at whatever stage, was completely out of the question. Our mothers suggested us having only 1 child, and hoping for the best that that one child wouldn’t have the SS genotype. Eventually, we found a solution online, by way of a Ghanaian doctor practicing in the United States, whose IVF specialty was Pre-Implantation Genetic Diagnosis (PGD), wherein the embryos would be screened, and only those free of the SS genotype would be transferred. This was music to our ears…except for 1 critical factor. At 27 and 26 years old respectively, we were both at the very bottom rung of the career ladder…translation being that there was no way we could afford the $20,000 cost of the procedure. Whilst we were still wondering how we would start a savings plan, and how long it would take us to in fact save this amount, he cheated on me, and the relationship came to an abrupt end. On the one hand, it was the most devastating thing that could ever happen to me, and it took me months (years, if I’m to be honest) to get over. But a part of me was relieved that I wouldn’t have to go down that route again.
When I started dating the next guy, I was convinced God wouldn’t put me in that same position back-to-back. I told myself that lightening didn’t strike the same place twice. So, I foolishly didn’t ask about the new guy’s genotype. Lo and behold, when we were already getting serious, I found out that he too had the AS genotype. I was devastated. But, as he was a few years older and had a better job, he convinced me that the PGD procedure wasn’t out of our financial reach. Alas, after the first few months of infatuation, the love faded and it turned out we were not as compatible as we’d thought, so we proceeded to part ways.
When I met the man who would become my husband, I had to shine my eye oh! I wasn’t shy to ask the critical question. In the past, my worry had been that it would have been way too forward and presumptuous to ask a guy about his genotype. It would have been right up there with the “Where are we going?” or “What are we doing?” questions. Cringeworthy! Hmmm…but after being twice bitten, cringing a little bit wouldn’t kill me. I was lucky that the opportunity to ask presented itself on a platter of gold. My new boyfriend (now husband) knew my former fiancé , and, on one of our earlier dates, asked me why we had broken up. I answered that genotype, as well as the “cheatation” (as Wendy Williams would say) had been the reasons we had parted ways. With the golden opportunity staring me in the face, I didn’t miss the chance to ask him about his genotype. I was almost weak with relief when I found out he had the AA genotype. I was so happy that I wouldn’t have to deal with that stress.
A friend of mine started dating her boyfriend from their 1st year in University. They were 5 years into their relationship when they found out they both had the AS genotype, but they forged ahead. By the time they had been dating for 10 years, marriage came up, but her Mother firmly put her foot down, refusing to allow this union take place. For almost 2 years, so many emissaries were sent to plead with my friend’s Mom, on behalf of the couple. Aunties, Uncles, Pastors, there was hardly anyone who didn’t try to put a word in. When all hope appeared lost, an Aunt was able to get her Mom come around, using the simple reason that, my friend was turning 30 that year, and they didn’t want her to be an old maid. Today, 10 years later, my friend and her husband have 2 beautiful kids (a girl and a boy), neither of whom has the SS genotype. Whether they have been lucky, or have had to terminate a few other pregnancies, I am not close enough to her to ask. But at least, they appear to have a happy ending to their story.
Today, the Pre-Implantation Genetic Diagnosis (PGD) is no longer some out-of-reach procedure. A number of hospitals here in Nigeria successfully carry it out. Yes, it is still very expensive (much more so than a standard IVF procedure), but there is some comfort in knowing it is available. This is the only solution to the problem I feel takes less of an emotional (albeit financial) toll on the couple. For couples who opt to terminate SS-genotype pregnancies, I find it hard to believe that they, especially the female partners, will walk away from the procedure unscathed. At 9 weeks, you have started getting used to the idea of being pregnant and have also started bonding with the child. Bringing this to an abrupt end will, no doubt, be painful…and I don’t mean physically. And for couples who have to do this multiple times…I can’t even imagine the emotional turmoil!
But it’s supposed to be a 1 in 4 chance, they say. True…that is the theory. But the reality is that, often times, this 25% rule holds no water. I have heard miracle stories of families with not one of their kids being of the SS genotype. I also know a family of 6 kids, 4 of whom had the SS genotype (2 of these 4 have, unfortunately, passed away). The truth is that there is no hard or fast rule to it, and one can never truly predict.
So, if you and your partner have the AS genotype, you have to have a loooong chat about the options available to you. If you can not afford the PGD approach, are against the prenatal diagnosis and termination approach, and don’t consider adoption, or permanent birth control as an option, you might want to have a rethink about your decision to start a family. No matter how deep and strong the love is, seeing your child (or worse still, children) in that kind of considerable pain, is enough to strain the best of relationships. It might actually be easier in the long run to just start life afresh, with a new partner.
Food for thought!
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