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Congenital Nystagmus & Pregnancy

ed16564ed16564 member
in Babies on the Brain

Hello!

 I am very new to this community. My husband and I got married last December, so naturally I'm thinking BABIES. Unfortunately I have a visiion problem known as congenital nystagmus. I know that my parents were carriers because noone else in my family history has had this, so I don't think I have the "dominant" genes. Does anyone know anything about this? The only support I've been able to find is from moms who've HAD babies with CN. But, nothing on TTCing when you yourself have CN. I know the best thing to do is go see a genetic counselor but I just was hoping to find something out from a real person whose been through this. Hoping that someone can  help me out. I live a normal life but 20/60 visiion (CORRECTED) stinks- and I think it would be selfish to have a baby if the chances were high that they'd have it too. Help !! :(

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Re: Congenital Nystagmus & Pregnancy

  • ed16564ed16564 member
    Nope. It's an involuntary eye movement.
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  • ToastieSimonsToastieSimons member
    You need to see a geneticist.  Just because no one in your family has it doesn't mean it isn't dominant.  I could be x linked and your mother is a carrier while you're affected (x inactivation) or you're a de novo mutation.  I have both types and no one in my family has them.  One is dominant and one is x linked.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • ed16564ed16564 member
    Have you had kids? Do you know any of the general statistics? Or have any other in sight :
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  • ToastieSimonsToastieSimons member

    imageed16564:
    Have you had kids? Do you know any of the general statistics? Or have any other in sight :

    i have 2 kids and I have one autosomal dominat (means its not on the x or Y chromosome) and one mutation on my X chromosome.  There is a 50/50 chance of passing on my bad x as I have 2 of them. A male is automatically affected but a female could be a carrier depending on her x inactivation. Dominant conditions have a 50/50 chance of being passed on.  However then there is penetrance.  My condition has a 96% penetrance, meaning there is very little possibility of having the mutation and not being affected.  Then there is mosaicism.  This is when the mutation is only found in some cells of the body and can be less severe than the full form depending on the cells affected.

    genetics is a Crazy thing! There is way more to it than that little Punnet square. 

    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • ed16564ed16564 member
    Ohhhh goodness : yes there is. Thanks for all the info. I live in a smaller town and when I was at the eye doctor yesterday she said I'd probably have to go to Johns Hopkins in Baltimore MD to get testing done. It just makes me feel like a Lab Rat. And like maybe I shouldn't even bother : but then using an egg donor and ivf is expensive, adoption has so many ups and downs and at the end of the day, everyone kind of wants to see a little bit of themselves in their baby but I just don't know if I can bring myself to having a baby if the chances are high that ill pass it on :
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  • ToastieSimonsToastieSimons member
    If ivf is in your bracket of options they can do pgd and determine if the embryos have the mutation.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
    Report Reply
  • ed16564ed16564 member
    Ill have to look into that. My hubby has good insurance does it normally not cover it?
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