It’s Not As Easy As A Flip Of A Coin

Everyone who aspires to one day be a parent strives to bring a healthy child into the world. No one that I’ve encountered hopes to have a child that will be born with a challenge they will face for the rest of their life. At 29 years old it’s become pretty obvious to me, especially if you log onto my Facebook and look at anyone on my news feed, that most of my friends and family in a similar age bracket are going through their childbearing years. Everyone is wishing them their congratulations and hopes of their child being healthy and happy.

What if you knew that the chances were strong that you were a carrier of a rare genetic disease that could potentially affect your child’s vision. Would you immediately rush out for genetic testing to confirm that you are or are not a carrier of the disease? Would you roll the dice and take your chances that you’re not a carrier of the disease? If you find out you are a carrier would it affect your decision to have children if you know you will either give birth to another carrier or a child that is directly affected by the disease?


Somewhere in the midst of all these questions is where I stand. My grandmother was a carrier for congenital X-linked retinoschisis. She gave birth to three talented boys who all are affected by the disease and have varying levels of blindness. The flip side of the coin is that their visual impairment has not stopped any of them from being very successful within their respective professions. When I see how all three boys have adapted and pushed forward it’s almost enough to stop questioning anything on the subject. Until I come back to reality and realize that there’s a good chance I’m carrying the disease and my decisions affect how it continues on in the family.

Now 2 of grandma’s boys each had a daughter, obviously I’m one of them, and grandma’s other son had two boys. Luckily my male cousins have won the genetic lottery as a characteristic of the inheritance is that it cannot be passed to sons. However, my female cousin and I run the high and likely risk of not being so lucky. If either or both of us possess the genetic pattern then all it takes is one altered copy of the gene in each cell to cause the condition in any male children we would produce.

Just recently I learned that I can now be genetically tested to see if I am a carrier of the disease and that’s caused me to start asking some tough questions. Since I have trouble with the topic that you can now genetically chose the sex of your child, I am facing the fact that if I am a carrier for this disease then deciding to have children will continue the cycle. What would you do if you were faced with such a serious decision?

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6 Comments

Filed under Parenting, Taking Charge of One's Health

6 responses to “It’s Not As Easy As A Flip Of A Coin

  1. Andy Sikora

    seems simple, have a boy!!

    • I am hoping that as technology changes there will be more items out there to assist those with visual impairments so that if I do one day have a boy he will have the things needed to assist him in his day-to-day life. Uncle Jeff got a seeing eye dog so I’ve gotten to see how much that has helped him. Over the years I’ve watched dad use technology in all kinds of ways to help him. I can only hope things continue to improve in the future.

  2. Get the genetic test done. If you’re not a carrier, you’re off the hook. If you are, you can research options for fixing the problem. The advances in the time between Steve and Chuck were huge. I’ll bet the options are even greater now! BTW – think about getting married before squirting out kids…just a suggestion! – MOM

  3. Jon Senge

    It’s an undeniable part of our family. I couldn’t imagine any alternate reality where it wasn’t the case. All three brothers are incredibly successful examples of living with a disability, but not letting it disable them. I think it’s a part of who we are, and I am sorry you have to carry the burden of it on your own. We all love and support you and your decisions. There’s certainly nothing to worry about if a son was born this way. He’d be coming from fantastic genes and would find his way through it. I know you’ll ultimately make the right decision for your family and your life. And we’ll be here to support any way we can.

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