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I am a carrier of Fragile X...what does that mean for my baby?!

by sallystar, Jan 24, 2007 12:00AM
Okay Ladies...well it seems like something great happens (seeing the heartbeat) just to get knocked back down again.  It seems that I am the carrier of Fragile X Syndrome - the gene that causes mental retardation, autism, and a whole host of other things.  My boyfriend is getting tested this week - but from reading about it online it seems like even if he doesn't have it this gene can still be passed onto the baby.  The one website I was reading basically said any son I have has a 50% chance of displaying the characteristics of Fragile X - not just being a carrier.  I am FREAKING out...want to cry...does anyone know anything about Fragile X Syndrome?
Member Comments (3)

by jenstam, Jan 24, 2007 12:00AM
To: sallystar
Hello, I'm sorry they found this! Did you just find out now? Does it run in your family? How did they find it? I was researching it because I don't know anything about it and I found this:

http://www.fragilex.org/html/carriers.htm

by girlybuff, Jan 24, 2007 12:00AM
Hi.  I'm so sorry you're going through this.
A dear friend of mine has a brother with this syndrome.  She is 100% "normal" and is not a carrier.  Their mother not their father was a carrier and she also had no signs of it.  So she had one child born with it and one child who was not.  I'm not sure about the odds of it actually taking form.  You should get genetic counseling.
I will tell you however, that my friend's brother, although a man of 40 now, is mentally and socially not older than 7 or 8.  He is highly functioning but still lives with his parents.
My friend had son recently and shows no signs of it.
I don't know if there is a real statistic as to whether or not your child will definitely have it.  I think maybe they can do an amnio.  The only thing is that you would have to decide what you would do if it turns out that your baby does indeed have it.  
My friend's family loves this child unconditionally and although it's been hard they have also learned a great deal from him about taking life slower and appreciating the good things.
I hope you know that it will all work out the way it's supposed to.
Again, I'm sorry but it's not a death sentence for your baby.  I think you should talk to your dr about your next steps.
I will pray for your family.

by twiceadopt, Jan 24, 2007 12:00AM
i have a friend who's raising her nephew with fragile x, the parents gave up the kid because they couldnt handle him. i think the retardation can be severe, but the kids are as loving as any other. agree with the previous poster, get further genetic counseling to see what they can determine. good luck-
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