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Cystic Fibrosis Gene...

chrissc34chrissc34
in 1st Trimester
I posted this in march 2012 moms and thought I should post it here too.   I had blood work done over a week ago and they tested me to see if I was a carrier for cystic fibrosis.  I got a call today I am.  She said nothing to worry about as of now?!?!  I was told they will test my husband and if he is NOT a carrier, all is fine.  If he is there is a 1 in 4 chance our child could get the disease.  Anyone else a carrier.   I read some about it, says 1 in every 26 of caucasion descent have the gene.  Did anyone else get this test done??  What are you thoughts??Kind RegardsChristine 
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Re: Cystic Fibrosis Gene...

  • avalovesartavalovesart member
    We're getting the test done next week. I read something similar, that 1 in 30 are carriers. Being a carrier should not be scary itself, like the doctor said. It is when both parents are carriers that the risk increases. If your husband is also a carrier, more testing will be offered where you can have testing on the placenta (I think it was the placenta -- I turned in my paperwork today, so I no longer have the exact details) to find out if the baby has CF.
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  • BeanieWeanieBeanieWeanie member
    They tested DS when he was born and found out he was a carrier (not a test we asked for, but that's another issue). I've since been tested and I am a carrier but DH is not. Which means any other kids we have might be carriers but won't suffer from CF.
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  • MarieH11MarieH11
    So crazy you posted this. I just got a call yesterday saying i'm a carrier. My DH went in today to be tested. The nurse said not to worry either as if that's possible. I was at work and cried for half an hour. Bad thing is no one at work knows i'm pregnant yet so it was hard to explain. I have never really heard anything about it so it was a surprise when i heard i was a carrier. Now we have to wait another couple of weeks to find out. I hope everything goes well on your testing.
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  • WaitingOnTwoPinkLinesWaitingOnTwoPinkLines member
    When I went for my consult appointment with the RE, we discussed CF testing. I will get tested since I'll be a pin cushion anyway, but DH won't be getting tested unless I am a carrier. He is deathly afraid of needles (it's a true phobia, not just an "eek!" thing), so unless there is a legitimate risk of our child HAVING CF (vs. being a carrier) he won't be tested.
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  • LilacStar11LilacStar11 member

    I was tested because my cousin actually has CF so we know either my grandma or grandpa were carriers.  I was tested but it came back negative.  Lake PP's said, if you are a carrier, your husband definitely needs to be tested.  If he is a carrier, there is a 1 in 4 chance.  My aunt has 2 kids, one of them wound up with CF.

    If you have any questions about children with CF, I would be happy to answer them.  Best of luck and hope all your DH's test negative!

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  • cjevarcjevar

    CF runs in dh family so they tested me and I was negative so dh didn't have to get tested.

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  • CharlyneCharlyne
    Both of my parents are CF gene carriers and my little brother has CF so I got tested before we even started TTC. Thankfully, DH is not a carrier so we don't have anything to worry about except for our children being a carrier. Both you and DH have to pass the gene on to your child for him or her to have CF.
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  • FrancookieFrancookie member
    this is surprisingly common in caucasians!
     
    CF runs in my family (my cousin has a baby with CF) so I am being tested.   I have a 50% chance of being a carrier and I am waiting for those results.   Then if I am, we test the hubs.  He is South Asian so I am trying to find comfort in the unlikelihood that he is a carrier, even though it is super likely that *I* am!!!    
     
    So basically trying to keep calm and carry on.  I guess we coulda shoulda tested before getting pregnant but my genetics counsellor said I am certainly not the only one to have waited this long!

    My only anxiety is that I am already 12 weeks along... I really dont want to find out any bad news now!!!! 
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  • kristin329kristin329
    My first cousin passed away at 13 after his lifelong battle with Cystic Fibrosis.  I was tested with my first child and was not a carrier.  You are ok since your husband is not a carrier.  Both parents must carry the gene.  Thank your lucky stars as this is a heartbreaking disease for children.
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  • chrissc34chrissc34
    My husband test came back negative for Cystic Fibrosis.  He is not a carrier.  God bless all out there who battle this.
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