mom2lillian
New member
Karismom- I dont think you should have to apologize for your comment, it was honest and from the heart AND a perspective that very few people are able to give not having been there. I appreciate your perspective and have htought about it alot. I did see your blog but I did not respond because it seemed you were already very down on yourself and upset and I didnt feel that it was right to respond back (even though I know it was your request) I didnt see hwat confirming your opinoin would do to make you feel better.
I have never understood how someone can knowingly take a 25% risk having a 2nd child with CF but I do know in real life a couple that has done it and anotehr that might do it. I try to understnad from their point of view. I think that since I know I would at times feel like my parents had gambled wiht my life/health I myself dont feel I could take that risk as a parent. ON the other hand even though I have CF I think I have a great life and I am glad I am here so ....
I also wanted to say that hearing your description made me think about the risk I took with my daughter. We had carrier screening done on my husband and he is not a carrier HOWEVER that still leaves about a 1% chance he could be a carrier of a less common mutation. This means there is ~ 0.5% chance my daughter could have been born with CF. We had an ambry panel done on her and she is just a carrier.
I previously was of the opinion (also the one given to me by doctors and genetic counselors and made sense) that there are a # of diseases out there which your child has a 0.5% or greater risk of inheriting without your knowledge so it is no different. Except that we KNOW CF risk.
Now I am wondering when we do have anotehr child is that 0.5% risk something I am willing to take again? I am just not sure. It is somehting I will have to talk over with my husband. WE cant possibly test them for every other disease, so do we play the roulette with the CF possibility like we have to with everything else (as does everyone) when you have a kid? Or do we leave nothing to chance and get an amplified panel for my husband?
If we do leave that 0.5% chance out there is that any different than someone who is willing ot take that 25% chance?
I am not sure.
thank you for putting your honest feelings out there and getting me thinking.
I have never understood how someone can knowingly take a 25% risk having a 2nd child with CF but I do know in real life a couple that has done it and anotehr that might do it. I try to understnad from their point of view. I think that since I know I would at times feel like my parents had gambled wiht my life/health I myself dont feel I could take that risk as a parent. ON the other hand even though I have CF I think I have a great life and I am glad I am here so ....
I also wanted to say that hearing your description made me think about the risk I took with my daughter. We had carrier screening done on my husband and he is not a carrier HOWEVER that still leaves about a 1% chance he could be a carrier of a less common mutation. This means there is ~ 0.5% chance my daughter could have been born with CF. We had an ambry panel done on her and she is just a carrier.
I previously was of the opinion (also the one given to me by doctors and genetic counselors and made sense) that there are a # of diseases out there which your child has a 0.5% or greater risk of inheriting without your knowledge so it is no different. Except that we KNOW CF risk.
Now I am wondering when we do have anotehr child is that 0.5% risk something I am willing to take again? I am just not sure. It is somehting I will have to talk over with my husband. WE cant possibly test them for every other disease, so do we play the roulette with the CF possibility like we have to with everything else (as does everyone) when you have a kid? Or do we leave nothing to chance and get an amplified panel for my husband?
If we do leave that 0.5% chance out there is that any different than someone who is willing ot take that 25% chance?
I am not sure.
thank you for putting your honest feelings out there and getting me thinking.