Cystic Fibrosis

Binksmarie · June 2012

So I just got a call from my doctor's office saying that I am a carrier for cystic fibrosis. I am praying that my husband is not. Does anyone else have any experience with this I am kind of freaking out!

anneimal98 · June 2012

BostonKisses (on parenting) has a daughter with CF. As I understand it, both parents need to be carriers though so don't totally freak out yet.

Allycat11 · June 2012

When talking to my Dr. she said even if both parents are carriers there is only a 1 i 4 or 1 in 5 chance that your child will not be born with Cystic Fibrosis. So, even if your husband is a carrier, it does not guarantee your child will be born with CF. If you both are carriers, my advice would be to educate yourself as much as you can now but remember that there is no guarantee either way.

futuremrscanet · June 2012

I am a carrier, had to wait (an agonizing wait) and get the test results from my husbands blood test. He is not a carrier. The statistics scared me...but honestly there is nothing you can do until you get the results from his blood test. 1 in 4 chance that your baby doesn't have it. 1 in 4 that your baby will have it, 2 in 4 that they are just a carrier. That is only if your husband is a carrier also. Please get him tested as soon as possible and try to keep your mind off of it (hard to do i know!!)

denise_m · June 2012

With dd1, I found out I was a carrier but dh is not.

Binksmarie · June 2012

Thanks for all of your responses. I know we still have a good chance that are baby will be fine but I just can't help but worry.

sesigs · June 2012

Like other PPs mentioned, it is hard, but right now just take a deep breath and wait for YH's results. He also has to be a carrier for there to be a chance for the baby to have CF. If he is a carrier, the CF Foundation website is a great resource and a good place to start (along with talking to your doctor). We have family friends with two daughters one has CF (she is a healthy 24 year old in grad school!) and the other isn't even a carrier for it. GL! T&P to you!

nanabanana06 · June 2012

I too am a carrier for CF. If DH is a carrier too then we have a 1 in 4 chance of having a child with CF (so 25%). Both parents have to be carriers in order for it to even pass. What my doctor has told me that if DH's blood test comes back positive as a carrier then we have to go get an amnio. There is still a good chance that the baby will be perfectly fine though.

From what my genetic counselor told me is that 1 in 25 caucasian people are carriers. So it's pretty common.

MrsW0615 · June 2012

I'm a carrier for CF. My sister has CF. My kids do not have it because my husband is not a carrier; however, my kids could possibly be carriers. It's autosomal recessive so if you and your DH are carriers there is a 25% chance your LO could have CF.

I suggest just getting your H tested to see if he's a carrier. If he is, then you may want to consider further genetic testing. If not, you have nothing to worry about.

Binksmarie · June 2012

My husband has an appointment to get tested on Monday. I'm not sure if this makes a difference but his sister has three kids and she is not a carrier for CF. Since she is not does that mean he has a better chance of not being a carrier either?

Mason&Mama · June 2012

First of all, please don't freak out. The chances that you are both carriers is very slim. I knew 100% that my fiance was a carrier when I conceived because his daughter from a previous relationship does have cystic fibrosis. Luckily, I am not a carrier. Don't quote me on this, but I believe that the chances are about 1 in 100 that someone is a carrier.

If you are both carriers, there is a 25% chance that you baby would have cystic fibrosis, a 50% chance that they would just be a carrier, and a 25% chance that they wouldn't even carry the gene at all.

this decaf life · June 2012

FX your husband isn't a carrier. We rejected the test for CF so I'm not sure where we stand.

buttabean14 · June 2012

This is me right now. I'm waiting for my DH to get his blood tested because I'm a carrier. We had to go to a genetic counselor because of my prior miscarriages, and she told us that 1 in 25 are carriers for CF.

Like everyone else said, if you're both carriers the chance of your baby having CF is 25%. There's a 50% chance that your baby will be a carrier-either from you or from your spouse-thereby having no symptoms. There's a 25% chance that your baby will get no bad genes from either of you and be completely normal also.

Gill&Bud · June 2012

You're lucky that you get tested for the CF gene while you are pregnant - that isn't something that they check for where I live. Our first child was born in 2010, and he was diagnosed with CF at 2 & 1/2 months old. I had no idea that I was a carrier, and neither did my hubby. The diagnosis was a total shock. We are now expecting our second child, and so at least this time around we know that there is a chance of CF. We will be meeting with the genetic counsellor soon, and they will do an amnio to find out whether or not the baby has CF. We are trying to keep our hopes up - there is only a 25% chance that the test will be positive, and a 75% chance that it will be negative. Our first son is thriving, and we have been very blessed so far. 1 in 25 people are carriers of the CF gene, and most have no idea. Hope everything works out for you! In the meantime, if you have any CF related questions, feel free to contact me any time!

PeonyPumps · June 2012

I just saw this now, but my H is a carrier, I am not. One thing that helped us in the testing stage was making sure he had the 97 panel test. My SIL and BIL are both carriers and they have a DD with cystic fibrosis, their first baby. SIL tested negative on the carrier screen because her mutation did not show up unless they tested with the 97 panel, and they found out when she was born that she has CF. (She had to have her jejunum removed almost immediately after birth due to problems with her intestinal/digestive system) They decided for their second baby that they didn't want to go through the 25% chance of the baby having CF, as that was the same risk their DD had, and she has cystic fibrosis, so they did IVF and testing prior to implantation to rule out CF in the embryo.

You can always PM me with questions as well. Hoping your H is not a carrier.

little_cupcake · July 2012

As everyone else has mentioned, you both have to be carriers of the CF gene to potentially pass it onto your child. And if you both are carriers, it's a 1 in 4 chance of having a child with CF.
We just had our second child in May, and he has cystic fibrosis. It was a shock, we had no idea we were carriers and our first child is totally healthy. But these days CF is manageable. Our baby has two copies of the most common CF gene, which means he has it in its most severe form and it is 'classic' CF. But he is healthy. We do daily physiotherapy for his lungs, he has enzymes before he eats and other supplements and antibiotics throughout the day. He is 8 weeks old and is still fully breastfed and putting on weight really well, smiling and is happy. So even if you are both carriers, and even if you have a child with CF...it's not the end of the world. There are so many other things out there that are much worse. We fully expect both our children to do well at school, play sports, go to university or get a job of their choice, get married if they want and have their own kids. Aside from his medications and physio, he will have a normal life.

Beaglechon2012 · July 2012

Praying for you that your H is not a carrier. I am sorry that you are. Try not to worry as much as possible..

GrowingFamily2012 · July 2012

My sister is a carrier for CF but since her SO was not, her son does not have CF. Both parents have to be carriers for the child to have it.

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