I'm a Cystic Fibrosis gene carrier... no idea of DH is though. Ugh.

[HappyMamaBeth]

It won't change the outcome for us (I won't terminate), but I'd just like to know if I even NEED to be concerned at all.  DH is in Bahrain.. and while I'm positive they COULD draw his blood and send it out to see if he's a carrier, whether they WILL do this is another story.  Right now we're just waiting to hear if they'll let him have the blood drawn. 

I know if he's not a carrier, there's nothing to worry about.  If he IS a carrier, it's a 25% chance that our baby will have a CF gene from both of us (but then I understand there are other factors--different alleles, etc.).

I'm just frustrated that we can't take the next step in finding out if he's even a carrier.  I had an appointment set up with genetic counseling per my midwife's referral, but I canceled it.  I felt like it was kind of pointless since I don't even know if my DH is a carrier and I'm not interested in termination (obviously if I were interested in termination, I would probably go to genetic counseling and end up having amniocentesis).  If we're able to get the blood test done for DH, and he's a carrier, then I'll reschedule the genetic counseling appointment.

(I do have two children already, but they have a different father--previous marriage.  Apparently I didn't get the CF gene test done with them, but this time I did.)

[javilu]

I can understand how that would be frustrating.  It seems like, since you now have some information, it would be useful to have *more* information, so you can be better prepared on the off chance your baby needs some extra help at birth, you know?  I hope something can be worked out!

[Buzzer Beater]

Beth,

I'm sorry you're going through this...  from memory one in 27 people are carriers for CF, so that makes the odds your babe has it very   low. Even if your babe gets a faulty gene from both of you, that doesn't mean a life sentence of doctors and phlegm, necessarily. Our DD has 2 mutations for CF (there are thousands, and it's not known how most of them affect the disease process or if they do). We know that one is benign, and we're trying to find out information on the second one. Do you know what your mutation is? Generally the body behaves phenotypically like the least disease-causing genotype. Our DD's benign copy may very well make the needed protein properly and she will not show any signs of the disease, even though we've been told by 3 doctors she has it. She's perfectly healthy so far! If you can find out more about your mutation from the geneticist it could put your mind at ease even though your husband's status is unknown. It's estimated that thousands and thousands of people have CF and don't know it- they think they have asthma or irritable bowel syndrome! It's NOT necessarily a short life any more. I still remember that awful feeling knowing something could be wrong with my babe. You may be able to find out more about your mutation if you have the number of it on a data base on line. If you can't find it I will try to get it from my husband. You can start at CFF.org

 Hang in there.

Sara

[HappyMamaBeth]

Originally Posted by Buzzer Beater 

Beth,

I'm sorry you're going through this...  from memory one in 27 people are carriers for CF, so that makes the odds your babe has it very   low. Even if your babe gets a faulty gene from both of you, that doesn't mean a life sentence of doctors and phlegm, necessarily. Our DD has 2 mutations for CF (there are thousands, and it's not known how most of them affect the disease process or if they do). We know that one is benign, and we're trying to find out information on the second one. Do you know what your mutation is? Generally the body behaves phenotypically like the least disease-causing genotype. Our DD's benign copy may very well make the needed protein properly and she will not show any signs of the disease, even though we've been told by 3 doctors she has it. She's perfectly healthy so far! If you can find out more about your mutation from the geneticist it could put your mind at ease even though your husband's status is unknown. It's estimated that thousands and thousands of people have CF and don't know it- they think they have asthma or irritable bowel syndrome! It's NOT necessarily a short life any more. I still remember that awful feeling knowing something could be wrong with my babe. You may be able to find out more about your mutation if you have the number of it on a data base on line. If you can't find it I will try to get it from my husband. You can start at CFF.org

 Hang in there.

Sara

Thank you SO much for this information.  My husband said he'd talk to the Doc ("Doc" is really a Navy Corpsman, not an M.D.) Sunday--and it's Sunday morning there now--to see if he knows anything about how to get his blood drawn.  If it looks like that isn't going to happen, I will look further into getting more information about the specific gene I carry.

I know my mom's coworker is a carrier and so is her husband (her husband's sister has CF--she is in her 30s and not doing well right now), so they went through all the genetic counseling and found out that her gene is a spontaneous mutation and not a big deal, so that was good news for them.  Hopefully I'll find out something similar if my husband is also a carrier.

Thanks again for this info!

[myk]

hugs! if daddy's unable to get his blood tested, you could always opt for amnio later on. it may not make a difference in terms of pregnancy outcome, but it can prepare you for it if there are multiple copies of the gene(s) involved. if i were in your shoes i'd do my best to get daddy's genes tested and go for genetic counselling and find out everything i can, so i can either make myself feel better, or prepare for what might happen. hopefully you have nothing at all to worry about!

[Buzzer Beater]

You're welcome, Beth. I forgot to add a link to the cystic fibrosis yahoo group. I don't post really but there is a wealth of information there. You just have to introduce yourself to join.

http://health.groups.yahoo.com/group/cfparents/ 

Sara

[dmpmercury]

I am a carrier of cystic fibrosis. I found out during my first pregnancy and I remember being worried before my dh got tested. If I was a carrier so easily I thought he could be one too. I didn't have it in my family at all. My dh ended up testing negative. I remember before I was pregnant I used to think that for a condition like that I would consider an abortion since the lifespan used to be so short but once I was pregnant there was no way even if the baby had CF that would be an option. I was nervous before I found out since it would also effect future family planning if he was a carrier. Shortly after I found out I was a carrier I came a cross an article on a hospital that was treating it so good that the lifespan was pretty long. They were going to hopefully use the succesful protocol at other hospitals.