Does anybody here know if they are a Cystic Fibrosis carrier? I found out recently that I am, and now we need to get Hubs tested. If he is also a carrier (1 in 29 caucasians are), then any children we have have a 25% chance of having CF.
I'm not freaking out over it, just curious about if anybody is in the same situation.
squash / 13764 posts
Not with CF, but I am a carrier for Tay Sachs, which is a usually fatal genetic disorder common in Ashkenazi Jews. Thank goodness DH is not a carrier--I was so relieved when we found that out. I hope your DH's test comes back negative!
coffee bean / 28 posts
i am CF carrier, but my husband isn't. it was a little nervewrecking waiting for his results to come through. i had no idea i was a carrier either. obviously one of my parents is too. knowledge and information is great, but sometimes i worry we know too much, you know?
good luck to both of you!
grapefruit / 4079 posts
I am a CF carrier, but this did not surprise me since I knew both my brother was. However, I was very upset because this news was given to me the day I went in for my d&c. Hubs was tested and came back negitive. What a relief! I don't know if I would have moved forward with having children of our own if we both tested for it.
pomegranate / 3272 posts
I found out that I'm a carrier (totally caught be my surprise as no one in my family ever had CF) and then DH found out that he is too. Of course I freaked out! However, after talking with a genetic counselor it turns out that we're lucky in that the marker that DH has is pretty much non scary and our kid should be fine. Something about how the normal marker that has the potential for complications is on the 5T (me) and the less scary version (my words) are on the 7or 9T. I'm not really sure what all that means as I'm a CPA. 
The counselor said that she hasn't seen a severe case in anyone else in our situation and maybe our son will have a few more colds than the average child. So we're pretty ok with our odds for having a healthy child.
The thing that kind of made me mad is that my doctor really was pushing for an amnio. DH and I had already decided that we would keep the baby regardless of what we found out and that an amnio would be an unnecessary risk for our child.
My friend and her fiance were in the same situation with both being carriers and they just had their child. So far so good.
If you have more questions, feel free to message me.
Best of luck to you!
clementine / 826 posts
Actually, I have very recent experience with this! My newborn tested positive for CF in her newborn screen. We took her to the local children's hospital last week for follow up testing. Turns out she is fine, but my DH and I got tested to see who is the carrier that gave her that gene. We will get the results in 4-6 weeks.
GOLD / cantaloupe / 6703 posts
Apparently my earlier stats were slightly off, it's 1 in 25. Hubs will get tested next week and we should have the results a week or two later. We're not going to stress about it too much, but it will be good to know. I don't think we'd do an amnio, too many risks, but we might have them do an NT scan if that would show anything.
@belleoftheballe: I'm glad everything is okay!
@MUI831: Like you, we wouldn't change anything, this would be strictly for info's sake.
grapefruit / 4110 posts
@MUI831: you are talking about translations on the cftr. They all cause asymptomatic cystic fibrosis when match with another full gene mutation. With cystic fibrosis your disease is only as bad as your best mutation. So the 5t translation with the other gene it doesn't cover as much as the 7t or 9t.
I also tested for the 7t on the cftr. This was a concern because my husband has cystic fibrosis. We also were told it isn't bad and decided to forego pgd. If our child has that mutation (only if it also has the 508 mutation from dad) he will have one of the symptoms of cystic fibrosis (asthma or no vas deferens). It is likely our child may have either of those even without that gene.
We did get our son a genetic screen at 1 week old to see which gene he carries (617 t to g). And when we started to deal with his failure to thrive we did a sweat test and he was negative. So we know he does not have cf. we wont know about his vas deferens until he is older.
grapefruit / 4110 posts
@MaisyMay: you can do ivf with pgd and make sure yours don't inherit it. If you fight hard enough, insurance may cover it.
pomegranate / 3272 posts
@brownie: Thanks for clearing that up and giving more information. I wish nothing but the best for you, your husband and your son. The counselor also told us about the possibility of boys not growing a vas deferens too. However, as she put it, who knows how they'll treat infertility in 25 years.
grapefruit / 4110 posts
@MUI831: not growing bad deferens is likely for boys even if they are just carriers (dependent on the gene they carry). Bot of my husbands are associated with cbavd. But he is proof that it can be done and treatments can only get better. And at least he will know and be able to go straight to treatment. No 1 year trying.
GOLD / cantaloupe / 6703 posts
@brownie: Even with the added risk if Hubs is a carrier, I don't if we'd go so far as to IVF. We're currently pregnant and if we have a kiddo with CF, we'll make it work. Our odds of having a kiddo with CF are only 1 in 4. Thanks though.
cantaloupe / 6206 posts
@MaisyMay: I know this thread is 4 months old, but I just found out I am a CF carrier and we need to have Dh tested. How did everything turn out for you?
GOLD / cantaloupe / 6703 posts
Hubs was fine. He did the testing and they got the results back to me about a week and a half later.
Even if your hubs has the gene, all may still be well.
cantaloupe / 6206 posts
@MaisyMay: Thanks.. gotta make an appointment to have him tested. I did a ton of reading about this yesterday and it seems in all likelihood, everything is fine. Thank you!
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