Pregnancy & Parenting After Infertility

Hi all,

I commented on the Clomid discussion but not the intro. I am 33, 6 weeks into my second pregnancy that was achieved after metformin, clomid, and progesterone (I'm still taking that one - blech). 

I have a major concern that I wanted some advice on. I found out when I was 8 months pregnant with my daughter that my sister is a carrier for CF (cystic fibrosis). I don't know if I am, I never had the test done. I have a 25% chance of being a carrier so I am thinking about getting tested.

I honestly don't know what I would do if I found out I was carrying a CF fetus. It is a horrible disease that can cause years of agony and always results in early death. The average lifespan is 20 years right now. I do know of someone that was in his forties with CF but I don't know if he had an enjoyable life.

Do any of you know children with CF? What are their lives like? I can't stand the thought of ending a pregnancy but on the other hand I don't want to create a life that is nothing but misery and pain. On the other, other hand - 20 years is a life, at least it's not days.

I realize this is premature but if I decide I would keep the baby no matter what I may not get the testing done.  The other issue is that my husband believes strongly that we shouldn't bring a child with a disease like CF into the world and I don't know how to discuss this with him other than say I can't bring myself to end the pregnancy.

Anyway, any advice or similar experiences would be helpful. I know this is a really touchy subject so please everyone try to be civil and non-judgemental.

<<<<BIG HUGS>>>>

First important question, is your DH a carrier? if he isn't a carrier, even if you are the baby won't have, it's a recessive trait that needs both genes present for it to show.  your sister is a carrier because she only has 1 of the genes.  (if her DH isn't a carrier they don't have anything to worry about either).  I would talk to the Dr soon as it sounds like your stressing yourself over it & that's not good for you or the baby.

Way back I worked at an Easter Seals summer camp, we had some campers with with CP, they did have health concernes that had to be adressed (almost all the campers did), yet they were happy kids.  I can't rememer anyone else with CP except a guy in Buffalo, being treated by Childrens that was on the news because he was a 20 something & was challanging the FDA to be allowed to use some machine to help him breath better, I know he won, & don't recall anything else beside that.

there is a CF board, you might be able to read the board & see what other mothers are talking about in regards to their kids with CF http://messageboards.ivillage.com/iv-ppcysticfib 

I would say at this point is not to worry about it, talk to your Dr because in the end you may not even have a chance of having a CF baby.

 

Thanks - I do know all about the genetics - that was my major in graduate school : )

My main concern is my husbands absolute conviction that we should terminate a CF baby. I don't know if I can do it.  I only have a 25% chance of carrying this and then my husband has to have it too, even then there is still a decent chance of a healthy baby. I'm just not sure I want to go through all the testing - is there much point in getting worked up about it (not to mention the expense) if I would keep the baby no matter what?

I haven't told my husband that we aren't on the same page - I guess I will wait for my test results to think about it further.

I don't know if this will help you or not, but I knew of a girl that had CF. She was about 15. We spent 6 months together. Aside from having coughs throughout the day, and sometimes having to pat her back and do breathing treatments a couple times a day, she was a typical, normal girl. She understood her limitations and it didn't seem to bother her any, nor anyone around her.

I cannot attest for what life was like prior to meeting her, or, where she's at now, I can only give you the 1/2 year I spent with her at her teen years. She was great.