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Cystic Fibrosis Testing


Forum: February 2013 Playroom

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  • 4 Post By JaneDoe
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  #1  
July 23rd, 2012, 09:14 PM
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Join Date: Jul 2012
Location: Falmouth,MA
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at my last appointment my doctor suggested that i get tested to see if i was a carrier to the CF gene. I got my results back today and it came back that i was a carrier and that they would have to test the BD to see if he was a carrier to see if the baby is at risk. Is it still wrong for me to feel so worried that something could be wrong with my baby before i even got the results back? I'm a ftm and very excited about this unexpected child after havin a MC last July and i'm just worried that my baby could potentially be sick. Anyone else have this happen to them? Just need some help settling my mind.
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  #2  
July 23rd, 2012, 09:37 PM
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I don't have any experience, but I did a little research, maybe you have already but maybe not.

From the Cystic Fibrosis Foundation (Carrier Testing for CF - CF Foundation):

"Among Caucasian Americans, about one in 29 people carry one mutation of the CF gene. In other races or ethnicities, one in 46 Hispanic Americans, one in 65 African Americans and one in 90 Asian Americans carry a mutation of the CF gene."

From about.com (What is a Cystic Fibrosis Carrier - What Does it Mean to Be a Cystic Fibrosis Carrier?):

"Broken down into odds, if the parents are both carriers, your child has a 25% chance of having CF, a 50% chance of being a carrier, and a 25% chance of neither having nor carrying CF.

If your partner is not a CF carrier, it will be impossible for your child to have CF because he can only inherit normal copies of the CFTR gene from your partner. However, your child will have a 25% chance of being a carrier, which would occur if he received the mutated CFTR gene from you. Meaning he could pass it on to his children."

So...first of all the odds that the BD is a carrier are low to begin with. And even if he were, there would still be only a 25% chance of your child having CF. So it sounds like really low odds to me.

Personally, would I still worry about those odds? Yes, but I'd try not to worry too much. It's all relative: if you hear someone's having a surgery with a 97% survival rate, that sounds really good - unless it's you or a loved one, in which case that 3% looms large. Similarly in your case, it sounds like a really low risk. But it's very understandable to be worried about it. I would say, allow yourself to worry a little but try not to take it too far, and keep reminding yourself about the statistics. The best thing you can do is just go ahead with the testing so you can put your mind at ease or arm yourself with information, and it sounds like that's just what you're going to do. Try not to worry too much until you get results back. And even if you did get a bad result, you should be able to meet with a genetic counselor who will be able to help put it all into a clearer perspective for you.

Good luck!
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  #3  
July 24th, 2012, 07:43 AM
martilynne's Avatar Platinum Supermommy
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It's only normal to worry. I hope the BD isn't a carrier so you have nothing to worry about. Hugs.
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  #4  
July 24th, 2012, 07:58 AM
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I wouldn't worry, if you ask me these doctors are doing too much testing, and if the tests are abnormal they want to tell women to have aboritons, I wouldn't pay attention or worry, either way your baby will be fine.
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  #5  
July 24th, 2012, 08:01 AM
Rebelmommy's Avatar Mommy to controlled chaos
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((HUGS)) I hope BD is not a carrier so that you can put your mind at rest!
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  #6  
July 24th, 2012, 08:05 AM
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It's normal to worry. You're a mom Welcome to the wonderful world of motherhood and constant worry.
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  #7  
July 24th, 2012, 10:30 AM
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Like the statistics show 1/29 from the general population are carriers of that particular mutation. IF he is also a carrier (hopefully not) then there is a 1/4 chance that the baby will have CF. Don't worry yet, odds are he is not a carrier!!
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  #8  
July 24th, 2012, 10:46 AM
eiramillek's Avatar Mega Super Mommy
Join Date: Nov 2010
Location: VA
Posts: 2,181
I was exactly in your shoes with my daughter! I got tested thinking, no big deal I won't be a carrier, and the doctor called back saying I was. I was worried sick!! DH went in right away to be tested but I think it was at least a week before we heard back and I was a nervous wreck the whole time!! Thankfully he is not a carrier so our children only have a chance of being a carrier.

Just try to relax, and keep in mind that even if he is a carrier, it's only a 25% chance your baby will have CF. I hope you guys hear back soon and please keep us updated!!
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  #9  
July 24th, 2012, 11:18 AM
birdblue's Avatar Mega Super Mommy
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*hugs* Totally normal to worry hun! Hopefully he isn't a carrier!
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  #10  
July 24th, 2012, 02:11 PM
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Location: Falmouth,MA
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thanks you guys. he's going in tomorrow to get his blood drawn so after that its just waiting to hear back from the doctors. thank you for the support tho.. it helps
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  #11  
July 24th, 2012, 02:25 PM
mistletoe's Avatar Mega Super Mommy
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I just wanted to throw in my support as well. It sounds like you are handling the news thoughtfully and healthily; it's normal to worry, and you're doing what you can to learn what you can. Hopefully the next blood tests will come back with news to ease your worries.
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  #12  
July 24th, 2012, 04:57 PM
stephanieaehenley's Avatar Mega Super Mommy
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I hope everything comes back with good news
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