There's a discussion going on right now in the Facebook Fragile X group about whether or not to have more children, when you know you are a carrier of the gene. Odds supposedly are 50/50. Carriers have an equal chance of having a child with Fragile X or not. I'm not sure I buy that.
First of all, you have two X chromosomes - one of them carries the Fragile X gene, one does not. So there, odds are 1 out of 2, clearly. But if you pass the one that carries the gene, it's not 100% for sure that the gene will mutate and produce a child with Fragile X. Your child could be just a carrier, like you. Then there are things like age to consider. Older moms are more likely to have children with various disabilities and problems. So does that mean an older mom might be more likely to pass on the X with the carrier status? I can't find anyone who can answer that question.
Not that it really matters one way or another, as I don't plan to test the theory by having more children. We knew we were done that day in the clinic, when the ultrasound indicated we were having twins. That was one more baby than we'd planned on, and that was enough for us.
But I'm still curious. Is it really 50/50? Or are there other things that factor into the odds?
I think there are a lot of families who probably didn't feel their families were complete, but who stopped having children because of the FX diagnosis. When you are a carrier, this is kind of the 64,000 dollar question. And there are a lot of things to take into consideration.
Because I have two children with Fragile X, I immediately imagine what it would be like to have more like them.
If AJ were my only Fragile X child, I could fairly easily consider having another like him. He's easygoing and sweet and not usually aggressive. He's happy, most of the time, and he's hilarious. When he has a tantrum, it involves crying and sadness.
If Zack were my only Fragile X child, most days I don't think I'd consider having more. He is so aggressive with everyone he doesn't know, and most people he does know. He's much more affected by autism. He's harder to make happy and when he has a tantrum, he yells and screams and lashes out at whoever is within reach.
Even though we knew we didn't want more than 3 children, finding out I was a carrier of the Fragile X gene felt like wall, barring me from having any more. I didn't want more, but I also didn't necessarily want the option taken away from me.
It's a touch choice to make, and I'm very glad we didn't have to make it. I thank God we had Aliza first, so that once we had children with Fragile X and knew the odds of having more, we didn't have to make a tough decision to try for more. I'm also very glad the boys have each other, and that they have a big sister to help them navigate their way through the world.
I am a bit of a gambler. I wonder if I'd be tempted to roll the dice and have more children and take my chances with Fragile X, if we didn't already have 3. I'm also a cautious gambler though, who knows when to quit. In the family gamble, I've already won, so it's time to call it a day and go home a winner.
I admire you. :)
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