Anyone a carrier of Cystic Fibrosis?

I just got a call from my obgyn today with my blood test results. It turns out I am a carrier of Cystic Fibrosis and my boyfriend needs to be tested also...they are mailing us a script for him to his bloodwork done. I spent all afternoon crying over this. They said the chance of both of us being carriers is slim but i'm still so scared. They told me I should see a Genetic Counselor...I called to make an appointment but they suggested he gets tested first which we will do. Has anyone been through this? If he is negative do I still need to see the Genetic Counselor?

Re: Anyone a carrier of Cystic Fibrosis?

I haven't been through it but just wanted to send you

Re: Anyone a carrier of Cystic Fibrosis?

I found out before I was preggo that I was a carrier. My Dh had to get a blood test torule out that he was a carrier as well. We did genetic counsling at Synders Childrens Hospital. They were great. While it was worrisome....the whole process itself was easy.
Waiting for the results is the hardest. Good luck! Several of my firends were carriers and none of the Dh have been.

Re: Anyone a carrier of Cystic Fibrosis?

I had these tests done because cystic fibrosis runs in my family. I do not believe there is a risk unless BOTH of you are carriers. Good Luck!

Re: Anyone a carrier of Cystic Fibrosis?

in order for your child to have CF you would both have to be carriers - but even if you both were carriers, there would only be a 1 in 4 chance that your child would actually have CF.

hang in there... there is an excellent chance that your bf will NOT be a carrier. it's the waiting that sux...

Re: Anyone a carrier of Cystic Fibrosis?

I was a carrier...and I had one out of I think 23 (or something) chromosomes that was the carrier. My husband would have to have the same abnormality of the same exact chromosome(or gene?) in or for our baby to have the chance of getting it. Luckily, my husband is not a carrier.

I know completely how you feel. It is VERY VERY stressful. I think that they should have the father's blood tested in
the beginning, just like the mom.

good luck

Re: Anyone a carrier of Cystic Fibrosis?

It really is the waiting that sux!!!! I'm hoping we get the script in the mail monday so he can go asap. I feel better about the situation today...yesterday I was a mess. When I got the call the started it with...Have you ever heard of Cystic Fibrosis? I lost it...I thought they were telling me the baby HAD it(I know they wouldn't be able to tell that from my initial bloodwork and sono but it was my first thought)

Re: Anyone a carrier of Cystic Fibrosis?

I am a carrier and had DH tested after we were pregnant b/c frankly we forgot about it. He is not a carrier, so we didn't have anything to worry about.

The waiting for the results is stressful -- hang in there. I'm sure everything will be fine.

Re: Anyone a carrier of Cystic Fibrosis?

You should see a genetic counselor just to understand more of what that means. We went to one last year for a scary situation and we have to go again next week as well.

If he tests negative then all should be good. I work with a woman that is a carrier - her husband is not and they had a beautiful and healthy baby girl last week. She too was scared. It will all wok out.

Re: Anyone a carrier of Cystic Fibrosis?

I am a carrier too - DH had to get tested and we were told that the chances of us both carrying the gene were fairly slim, and if he was a carrier, there was only a 50% chance that the baby would have CF. Thank god he is not a carrier, but I feel your pain. It's very stressful. Good luck!

Re: Anyone a carrier of Cystic Fibrosis?

I''m a carrier, though my husband isn't. i was tested b/c he had an uncle who passed away from the disease many, many years ago and we thought he HAD to be a carrier since it was in his family. NOPE - I am and we don't know of anyone in my family who has ever had it. it will be ok, your doc is right about the chances. hang in there, i know how stressful it is. have your bf go for the dna profile asap so that you can rest easy!

Re: Anyone a carrier of Cystic Fibrosis?

YEs, I am a carrier. Appartently there are different extremes. ie.. The type I carrier is if I had a son..he could develop infertility..not any respiratory problems. My DH wasn't a carrier anyway..and I had a daughter so it didn't affect me.. DOn't worry I know easier said than done.

Re: Anyone a carrier of Cystic Fibrosis?

I am not, but DH is. My DS also has an irregularity in his bloodwork that is considered a possibility for a carrier. His sweat test at 6 weeks did not support that however, and we will return for further testing at 6 months.

LIJ Schneider's hospital was fantastic, as were the genetics team at Winthrop. Accourding to them, the danger of a child developing CF is only apparent if both parents have compatible carrier genes.

Definitely talk to your Dr about it. There is a ton of information, and certain races and ethnicities at risk.

Re: Anyone a carrier of Cystic Fibrosis?

Posted by MsMBV

Definitely talk to your Dr about it. There is a ton of information, and certain races and ethnicities at risk.

Re: Anyone a carrier of Cystic Fibrosis?

With our first pregnancy, this past year, I tested positive as a CF carrier. Having never heard of CF before (entire family healthy), my husband had to get tested. Also a healthy athletic family. It came back that he was a carrier as well. We had to do a CVS test and found out in fact our baby had Cystic fibrois.
It was crazy... we never would have thought. Everyone says... oh, the odds are so nuts it will never be you but it has to be somebody.

Anyway, we are doign great! Unfortunatly, our first baby did not make it but we are now doing IVF to ensure that our odds are greater. We will have implentation in December. So excited.

I'm sure everything will be ok but just know if they are not, there are other options.
If you need anything FM me.


~Aimee

Re: Anyone a carrier of Cystic Fibrosis?

I am a carrier I was told to have my husband ck to see if he also was a carrier we didnt go to that step...our thought was why get us all worked up for a 1 out of 4 chance. when the baby is born they test the blood and we will find out then and we are both not letting the whole issues take over the joy of our new baby to come. The doc these days give you way to much info.

Best of luck

Re: Anyone a carrier of Cystic Fibrosis?

I'm a carrier too and my STBX had to be tested as well. We went for genetic counseling because we both had family history with birth defects, etc. (his sister died at birth from complications and my nephew was born with only 1/2 of his brain - he suffered through life for six months). The waiting was incredibly stressful but she's a heathly/beautiful 3 year old girl

Re: Anyone a carrier of Cystic Fibrosis?

If he is not a carrier then you should be fine. My doc said if I am a carrier and Ron is then we still have a 1 in 4 chance of having a cystic fibrosis baby. I had wanted to pass on the test since my two kids dont have it but she said we could still be carriers and have all healthy children. DONT stress about this at all.... you might not want to stress even if your boyfriend is a carrier since you will still have a 75% chance of a normal child. At least this is how I recall the way she explained it.

Re: Anyone a carrier of Cystic Fibrosis?

I am not sure if DH is a carrier but his sister is.
Being that DH is chicken, I got tested for it and am not a carrier.

to you, the waiting is the hardest, I am sure it will be fine.

Re: Anyone a carrier of Cystic Fibrosis?

Thank you for posting this, as I got the same news today and was considering asking people this question, too. I am not going to get worked up about it until DH has his blood tested as well. Good luck to you!

Re: Anyone a carrier of Cystic Fibrosis?

Everyone here made me feel alot better about the situation. I totally freaked that first day but am 99% better now...lol. I'm just going to patiently wait for the script to come in the mail so he can get checked out. Until then I will try not to stress...not good for the little one.

Re: Anyone a carrier of Cystic Fibrosis?

I'm a carrier and so is DH. My cousin had CF. You know the statistics, the 25% chance that the baby could not even be a carrier! We're banking on faith here

Message edited 9/17/2007 8:57:03 AM.