Special Needs

Fragile X Carriers?

Hi everyone. MH and I recently started TTC and we found out that I am a premutation carrier for Fragile X.  We were originaly going to do IVF with PGD but insurance wont cover the IVF because they say i have not been trying on my own for 12 months...we havent been trying on our own bc i am a carrier and are trying to prevent having a sick child.  I just wanted to come here to see if there was anyone else in the same situation.  it looks like we may have to try naturally, get the CVS test done at 10 weeks and hope for teh best.  i feel so overwhelmed and helpless.  thanks.

Re: Fragile X Carriers?

  • I did IVF and PGD not for Fragile X but for a gene defect I have that causes congenital heart defects.

    I know a woman who is in the same situation as you (fragile x).  She lost a baby (late in her pregnancy) because of it - then did IVF with PGD and is currently pregnant again.

    If you want to email me at: powers dot hannah at gmail dot com 

    I would be happy to put you in touch with her!


  • Is it too late to lie about when you began TTC?  Couldn't you just tell your dr. you've been trying for a year?
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