Carrier Testing?

anonymous

New member
<img src="i/expressions/face-icon-small-confused.gif" border="0">

I've been with my fiance for five years now, and I've grown very close to his family. His cousin, Jacob, is about 7 y/o now and has CF. Fi's uncle, father of Jacob, had a long talk with him about CF when he asked, and his uncle told him that he should get tested to see if he's a carrier, too.

Of course, my fi's going to get tested, and if he's a carrier, I'll get tested as well, but there's a distant family history of CF on my part, as well, that I've discovered recently, so it's quite possible that I've inherited the carrier gene. I may be putting the cart before the horse here, but since it's been on my mind lately, I wanted to talk about it with some people that have been through this... If we're both carriers, what then? My first thought is to not risk getting pregnant, to adopt instead of subject my potential children to a lifetime dealing with such a rough disease, but then I think of Jacob and what a sweet and INCREDIBLE kid he is, and even though he has CF, he has parents who adore him and a big sister who thinks the world of him, and a wonderful and loving family. Every time I see him, he's smiling and is so happy to see my Fi and I... I start to think that it's awful to not want a child of our own, even with the problems that CF brings, and to deny them a life filled with happiness and love in order to protect them from a life filled with especially-thick mucous. I hate to deny a potentially AMAZING child (my own!) a chance at life because I know that he or she will face challenges... And even worse, I hate to think of denying a life because I'm afraid of feeling guilty at having passed on my CF genes to them. On the other hand, is this irresponsible of me, to want a child of my own and to put them in danger simply because *we* want a kid that's our own.

So... I'm not sure what my question really is, but I'll pose this one: If you knew that you and your partner were carriers before your child w/CF was conceived, would you do things any differently? If you *did* know that you were carriers beforehand, and you now have a child w/CF, how has that affected you?

-Cayley
 

Emily65Roses

New member
This is a really tough question, and you will get a lot of different answers from a lot of different people. If I was having kids and knew my Mike was a carrier, I don't think I'd be able to risk it. But at the very same time... I wouldn't give up my parents having me for anything. CF or not, I love my life. And *because* of the CF, I'm more likely to notice that I love my life and appreciate it. I don't suppose I've been any help because I supported both sides... hah. But oh well.

And you know you can always do IVF type stuff. You can make embryos and then they can do genetic testing before implanting the embryo into you. So you can pick a non-CF embryo. I think that's how it works. I'm sure someone else will explain more about it.
 

anonymous

New member
There is always an invitro option with PGD if both of you are carriers. Although it is expensive, you can have a biological child that way. If you visit www.cysticfibrosismaleinfertility.com and go to the general information portion, it gives a breakdown of the percentages of you having a child with CF based on your and your husbands status.

Julie (wife to Mark 24 w/CF)
 

JazzysMom

New member
This isnt usually an easy decision nor should it be taken lightly. I have told a story before about my Supervisor at work (when I use to work) being pregnant & due 4 months after me. She was older when she got pregnant for the first time so there was the usual concern of birth defects. She was a good hearted, church going woman who confessed that if anything came back showing a problem with the baby that she would probably terminate the pregnancy. She just didnt have what it took to raise a special needs child. All tests came back fine. The baby boy was born & during his first time breast feeding he stopped breathing. When it was all said & done they didnt expect him to live through the night etc, etc. He now has CP & will be 7 in August. Ironically she ended up with a special needs child, but didnt have a choice. The choice she did have was to care for him at home instead of shipping him off somewhere. He has had many health battles & uses many meds including CPT that CF use. I actually contact her when I am having problems to compare notes. Since his birth they have had a healthy little girl. You dont for sure what you will get. Some people say dont chance it. Others say do. Its a personal choice. If my parents knew & choice not to have me then I wouldnt be here. However, I am. Am I angry at them for "giving" me this illness. Hell no. I never even think of it that way. I also have never thought "why me". I guess maybe because it wouldnt change things. I have CF it has made me a strong person & the person who I am. Would I like to be able to do things easier, quicker & without any regard to worrying about my health, Yes. Can I at this point, No. I have to be careful & digilant. My biggest advice to you is NOT to let others guide you. This is a decision that must be made by you & your other half. Even advice from those with CF children should only be listened to to a certain point. Every child is different even tho CF itself is similar. Every parent handles things a little different so search your soul!
 

anonymous

New member
I agree with Melissa on this one ... it is a very personal choice. My husband and I found out we were both carriers while trying to become pregnant with our daughter. After a whole lot of thinking and a whole lot of talking, we decided to continue trying to start a family. We did, and now we have the most wonderful 17 month old little girl who does not have CF, but is a carrier ... I can't imagine life without her. I was a happy person before, but she brings so much joy into my life that I didn't even know existed. After she was born, we kind of came to an understanding that this would be it for us, we wouldn't and couldn't take that risk having another baby. However, things change, and neither of us felt like our family was complete. We got pregnant again, and this time we found out that the baby I'm carrying does have CF.

While I would certainly take away the CF, I would never change this pregnancy or this baby, who I've already grown to love so much. While I can certainly understand the other side of the argument, and rationally, it makes perfect sense, at the same time I feel like this is the baby that was chosen for us, and I can't wait to meet her!

I think the most important thing is that you and your fiance are both onboard with whatever decision you make. If either my husband or I felt like we shouldn't get pregnant and take that 25% risk, we would have explored other options such as adoption. Not everyone will agree with what you decide, but ultimately it's your decision to make.

-- Jenica
 

anonymous

New member
Thanks to all of you who replied. You all have given me much peace of mind. Before, I felt like we might be in a position where we wouldn't have any options. But after reading your replies, I feel very reassured that if we were in that position, though we may encounter disagreement from family and friends with whatever we decide to do, we at least have options that we can discuss with each other and decide upon.

Thank you all. What a wonderfully supportive forum. It makes me breathe a little easier to know that if, God forbid, my child turns out to be afflicted with CF, there is at least a very supportive community that our family can turn to.
-Cayley
 
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