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August 2015 Moms
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Cystic Fibrosis genetic carrier

SunnyBBurfSunnyBBurf member
in August 2015 Moms
My doctor just told me I'm a carrier for Cystic Fibrosis.  Has anyone else been told this?  I talk to a genetic counselor tomorrow but I'm scared.  I think the next step is for my husband to be tested to see if he is also a carrier.  If he is I think we'll have to do the CVS or amniocentisis test.  Has anyone had these done before?  
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Re: Cystic Fibrosis genetic carrier

  • JemHolo2015JemHolo2015 member
    I wouldn't be too worried just yet. The likelihood of your husband also being a carrier is small. Then, even if he is a carrier the likelihood of the baby having CF is only 25%.

    If you did have a child with CF, it's not the end of the world either. People with CF are living normal lives and have significantly longer life spans than they did 10 or 20 years ago. So even in the worst case scenario it's manageable!! Deep breaths, it will be ok!
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  • llniedenllnieden member
    I am also a carrier for CF. When they told me I was entirely shocked and of course instantly panicked, despite my dr. telling me it may be no issue at all. We then had my husband tested and had an agonizing 10 day wait for results. thankfully, my husband is negative for the CF carrier gene and the only possibility is for the baby to be a carrier, like me.
    The wait is terrible, but try to stay positive... The odds are in your favor.
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  • mrswiebe09mrswiebe09 member
    I'm a carrier too, and agree with both PPs :-) try not to worry!
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  • mrsrfwiimrsrfwii member
    We were told about this when we went to a genetic counselor. We opted not to test for it since our insurance doesn't cover it and it was a $600 test. But we were told that we would both have to be carriers and even then it was a 1 in 4 chance that the baby would have it. I wouldn't stress too much.
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  • HaleyFayeHaleyFaye member
    I'm a carrier, too, and instantly went to get my husband's blood drawn. We were totally panicking for a week until we got the results, but he's fortunately not a carrier. I've been exactly where you are, and I understand the stress and worry. Try to stay calm and positive until you get the results back for your husband. It doesn't sound like the results of the test will impact whether or not you continue on with the pregnancy, so just know that whatever happens it's to help prepare you to take the best care of your baby as possible. I know it's hard and stressful - I'm definitely keeping you in my thoughts. Let us know how things go.
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  • chrissyadorechrissyadore member
    Not a CF carrier, but a carrier for fragile x. I had my third amnio done yesterday and if it comes down to it for you it's not so bad. Uncomfortable yes, but nothing to stress over. Good luck!
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  • mosslinmosslin member
    I am a carrier and then the doc said its unlikely my husband would be. After the agonizing wait after his blood draw, turned out he is a carrier as well. The doctor went over all of the options and explained the risk for each test and also what each test would tell us. We decided against the tests because there is no treatment for baby while still growing inside. When baby is born we will do all of the testing, but everyone keeps telling us the odds are still in our favor. Try not to worry :-)
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  • J&D2007J&D2007 member
    A lot of people are carriers, including myself. I would suggest first getting your husbands blood work done before genetic counseling. Odds are he is negative and it's a non -issue. There are also a few different panels that can be done for CF for DH, one 'regular' panel and one 'extended' panel that checks for more mutations. I would ask for the extended panel just to be sure none of the odd mutations show up that aren't checked in the normal panel. Also, check into your own mutation as some of them actually don't cause CF even if the child gets two copies. My mutation can cause a small mutation in a male child's sperm duct, but wouldn't actually cause CF.
    Me: 37, DH: 38: ttc 7 years, dx: unknown
    10/11: after 2 years, saw a RE, FSH 5.4
    11/11: BFP! (surprise after thyroid & normal hsg),
    12/11: missed m/c after 7 week u/s, 1/12: D&C
    6/12 IUI#1-IUI #3: clomid = BFP!, C/P
    IVF #1(10/12) FSH 5.4, AFC: 16 long Lupron, 5R/5M/4F, all 4 made it to 5dt, 1 blast/1-8 cell transferred=BFN
    IVF #2(12/12)AFC 21, MD lupron, 4R/4M/3F, 5dt of 1 blast and 2-8cell. BFN.
    IVF#3(4/13) Natural start antagon protocol, 12R,11F. one PGS normal at day 6 transfer. BFN.
    IVF#4 (11/13) C.CRM (ODW.U normal 8/13 Still no Diagnosis) EPP/antagonist. ER 13R/7M/6F. Only 1 made it to freeze. Abnormal. Looking into options of DE, Fresh vs frozen.
    10/14 new local RE to look into what's next. CD3 FSH 4.7, AMH 0.9. Met with DE agencies and exploring options for feb/march 2015.
    Surprise natural bfp (4 days before donor is signed). Beta #1 at 9dpo: 51.8, 2nd beta: 195 (25 hours doubling) @11dpo. 3rd beta (12/15): 516 (35 hrs doubling) 4th beta(12/17): 895 (58 hours doubling) 5th beta(12/19): 2120. U/S at 5w0d(12/22): one gestational sac with yolk sac. U/S #2 (6w0d)12/29. One little bean measuring 6w0d with HR 124. 3rd u/s(1/4)7w0d: baby measuring 7w2d. HR 134. 3/30: A/S at MFM went great except for low lying placenta. Verifi results are normal! Team Blue! Please send any positive thoughts our way! EDD:8/24/2015
    Baby Will born 8/18. He's perfect.
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