what are the chances my baby will have cf?

Angel2393

New member
I am not very knowledgeable in this area..so please dont laugh at this question.
Being I have CF, what is the chance my baby will have CF?
 

ambermarie03

New member
From what I have heard..again, from what I have heard..

Because you have CF, your offspring will automatically be a carrier of the CF gene. If your partner is also a carrier, you will have a 1 in 4 chance of having a child with CF
 

Printer

Active member
Actually 2 carriers have a 1 in 4 chance of having a child with CF because each has a non CF gene. You don't have a non CF gene. If your hubby is a carrier you have a 50% chance of having a child with CF. If hubby is or isnot a carrier you will have a 100% chance of your child being a carrier. Bill
 

marisalynn

New member
I am actually 9 months pregnant right now with our first, so I have done quite a bit of research on this, and from what I understand, Bill is correct.
Your baby will be a carrier no matter what because you have CF.
If the babies father is a carrier, there is a 50% chance that your baby will have CF, and a 50% chance that your baby will just be a carrier.
If your babies father is not a carrier, your baby will not have CF, but will be a carrier.
There are a few different tests to check if the father of the child is a carrier. We had my husband tested at my CF clinic, by a blood test, which thankfully came out negative for him being a carrier. Good luck!

Marisa RN, 24 w/CF 36 weeks pregnant with our first baby girl!
 

LouLou

New member
...just be aware that unless your child is tested for over 1000 mutations or your spouse is then you can't really rule out cf in a baby. In fact, I suggest the baby be sweat tested as well as genetically tested since some people fail the sweat test but only have one mutation that is known. There are still unidentified genes. I was this thorough with my son because I wanted to "close the book" on any chance of him having cf even though dh had tested negative to the "carrier test" which is usually only 89 mutations FYI. I didn't want to wonder every time he had a cough or a sniffle if he had unidentified cf. Well, the thoroughness resulted in finding 2 mutations. He is now 4 years old. Very healthy but very confusing cf situation because he passes the sweat test, newborn screening in PA, and is PS. His 2nd mutation is involved with PS and mild lung involvement. We feel blessed to know of his cf and happy that he is in our arms becuase anywhere else and they wouldn't even know of his cf. Who knows when it would have reared its ugly head but at least this way we are doing what we can to prevent damage. And since he has G551D from me I might add. As soon as V770 is approved for adults he'll be put on it off label. It really is the best scenerio possible. At least that's how I look at it over 3.5 years since diagnosis.
 

LouLou

New member
Oh and for you stat lovers...we were told our baby had a 1 in 500 or 0.02% chance of having cf with the knowledge that dh had tested negative to the 89 most common mutations.
 

serendipity730

New member
Lauren - I'm just curious. Did you have CFTR sequencing for your son? Did he have a positive sweat test? My husband also had testing (only 25 mutations) and was negative. I am comfortable with the residual risk (I think). I wasn't aware that your husband have been identified as "low risk" to be a carrier prior to the birth of your son.

Angel - Are you currently pregnant or just thinking about having a baby? In any case, there area lot of different testing techinques available now. One test looks at the entire CFTR (gene is not working in CF) gene. This test can find any changes, but it is possible that it will find a change that is of "uncertain significance", meaning it may not cause CF and just be normal variation. Other testing just looks for the most common mutations. The mutation "panels" usually decrease the chance of to less than 1% (of your partner being a carrier) I am a genetic counselor, so I know quite a bit about this stuff :) Feel free to PM me if you have any other questions.
 

LouLou

New member
Yes I got Genzyme testing of over 1000 mutations on my son that found a second mutation. And yes he passes the sweat test. I made them do both tests on the same day. If I could do it again though I would have brought the box to delivery and would have cord blood sent in for testing so I wouldn't have to take the baby to the hospital again. Then I would get the sweat testing months later.

I was comfortable with the risk as it seemed like the child would only get a mild mutation if he were to get one that was not picked up on original carrier screen of dad but now I am not so sure.

My husband as it turns out is a carrier that only shows up if he is tested for over 100 mutations as it is not one of the most common though by no means is it rare in fact...this is absolutely crazy but I've had a mom on here contact me and her baby was tested and found to also have the same gene as my son. She passed on a different mutation to her child though than I did. She also has cf and now her child is being followed for cf too. Don't worry but don't assume when you know that 25 mutations only rules out around what like 90% of incidence?
 
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