Can Someone send me a link

[my65roses4me]

I need a reputable link for my husband and I to read about the
chances of cfers having cf babies. I want it to come from somewhere
reliable like cff.org. If you know of anywhere like that please let
me know. Thanks

 

[NoExcuses]

.

 

[my65roses4me]

The statistics of me as a cfer having a child with cf naturally.
Thanks Amy

 

[julie]

I"m tryint to understand your question... Is your husband afraid that IF you get pregnant, your child will have CF? Is that what you are wanting statistics on?

The thing is, if he is a carrier, there is a chance that your child WILL have CF, but if he's not, your child will be a carrier. I'm not sure statistics like that exist on the cff website, however there is a book that I gathered my info from for my website, here's an abstract of it: <a target=_blank class=ftalternatingbarlinklarge href="http://www.cysticfibrosismaleinfertility.com/Where_to_begin_carrierTesting.html">http://www.cysticfibrosismalei...in_carrierTesting.html</a> The book is called "growing older with CF" and you can order a free copy of it from a link on my website.

Hope this helps.

 

[anonymous]

Thanks Julie! That exactly what I was asking. I wanted to know the probability of our child having cf. I have read some of that book. Here is a exert from it
<div class="FTQUOTE"><begin quote>If the father is tested by one of these sensitive test and is not found to carry a cf gene, the likelihood of having a child with CF is only one in several thousand.</end quote></div>
So now I am confused. I have been told that if my husband wasn't a carrier then there is NO chance of our baby having CF, but would be a carrier.
Can someone clraify this for me?

 

[my65roses4me]

whoops that was me. I forgot to sign in!

 

[wanderlost]

do you know how to do the little genetics square with the big X and the little x? If you do, you are XX, a person who has no CF is xx and a carrier is Xx. You can figure it that way. If you don't know, basically it is like this:

* 2 CFers will 100% have XX children - kids with CF
* a CFer and a carrier have a 50% chance of having a kid with Cf (XX) and a 50% chance of having a kid who is a carrier (Xx)
* a CFer with a non carrier has a 100% chance the child will be a carrier (Xx)
* two carriers have a 25% chance the child will have CF (XX) , 50% chance it will be a carrier (Xx) and 25% chance it will be unaffected (xx)
* 2 non carriers will have non carrier, non affected children (xx)

 

[my65roses4me]

<span style=" font-size: x-small;">Thanks for the post wanderlost.
That makes total sense to me. I have never seen it put that way.
The way you have explained it is what I was told but when I read
that exerpt from the book I got nervous because it makes it sound
like the child still has a chance having CF not just a carrier. I
am not worried about our child being a carrier because he/she will
know that her/his spouse needs to be tested too. I just cant afford
to have a baby with cf so I am doing my research. I apreciate your
input.<br>
<br>
What do you think about what the book says? Is it false? Its from
the book, ( Growing up with CF) from Julie's website.

 

[julie]

khristina,

The book growing older with CF is as factual is humanly possible, as are many other resources on the topic. The reason why statistics state that even if one partner IS NOT a known carrier and the other one HAS CF; it it is unlikely the child will have CF, but there is still a chance that the child could have CF because there are over 1300 KNOWN CF mutations and more found all the time (when I was tested 1.5 years ago there were only 1225 that they tested for, now there are almost 1400 they test for). I was NOT found to be a carrier, but because of all these new mutations being found, we ARE going to sweat test our children. There is NOOOOOOOO 100% guarantee.

So, that margin of error is there because what if your spouse carries a RARE mutation that is not yet tested for/detected? Your child could still have CF (have a positive sweat test, negative/carrier only DNA test AT THIS TIME) because of that rare mutation. So they have to state that margin of error.

Hope that makes sense.

 

[my65roses4me]

<span style=" font-size: x-small;">Julie that makes total sense. I
appreciate your input.<br>
<br>
<span style=" font-size: small;">I saw the pictures of your
babies, they are beautiful!!! Congratulations!  They appear to
be thriving well. How early can they be tested?

 

[harvey]

Dumb question...but if one parent has the Delta508 mutation and the
other has the <b><a href=
"Redirect.aspx?type=1&url=http://www24.overture.com/d/sr/?xargs=15KPjg19hS4ZXyl%5FruNLbXU6TFhUBRwcn3oZouWo8qQIhBrSc5DbkhO7yQyYY8D700qhHZzfKQ%5FaMROoCj2%5FaLEQaMQleKHub93ZqcwPk7P6nXWqdH9MUtw%2DLh7PdYZXIGMl6BEtO%2D6pzLUtSIPw896NUOxQvC8PF4ncK3xe8eGayF1QsmoBiLfMISs60ohs3EOZteWuEcPJ3AwDbAKc4ClJ8s0%5Fv7MyESNiy87XENrVmWZD0o%5FvGZP9pY%2D%2Dap9dbGOr%2D434ABNSvbqah1qROX3z058bh%2DNw2M%2DKx1oW5qD6alIC%5Fe%5FAotobDejPPFL9p9vDGqXM7fUiDiYjYGIw8oDv%2D4I1HAJXEksUHaM8QCKJvyryiufdL%5FeDAhfFMK%5F7TtZpJZpE7YsF5%2DDniZTYW03i5CIvwRpH7z0B3k60xnj%5Fcz%2DvXdJ8E65dfc%2DRKGDC9mr0CcmYy9WqXG%2DAED5Cg9tv0OCYdWl8hikQ%2E%2E&yargs=www.medscape.com">
1717</a></b><a href=
"Redirect.aspx?type=1&url=http://www24.overture.com/d/sr/?xargs=15KPjg19hS4ZXyl%5FruNLbXU6TFhUBRwcn3oZouWo8qQIhBrSc5DbkhO7yQyYY8D700qhHZzfKQ%5FaMROoCj2%5FaLEQaMQleKHub93ZqcwPk7P6nXWqdH9MUtw%2DLh7PdYZXIGMl6BEtO%2D6pzLUtSIPw896NUOxQvC8PF4ncK3xe8eGayF1QsmoBiLfMISs60ohs3EOZteWuEcPJ3AwDbAKc4ClJ8s0%5Fv7MyESNiy87XENrVmWZD0o%5FvGZP9pY%2D%2Dap9dbGOr%2D434ABNSvbqah1qROX3z058bh%2DNw2M%2DKx1oW5qD6alIC%5Fe%5FAotobDejPPFL9p9vDGqXM7fUiDiYjYGIw8oDv%2D4I1HAJXEksUHaM8QCKJvyryiufdL%5FeDAhfFMK%5F7TtZpJZpE7YsF5%2DDniZTYW03i5CIvwRpH7z0B3k60xnj%5Fcz%2DvXdJ8E65dfc%2DRKGDC9mr0CcmYy9WqXG%2DAED5Cg9tv0OCYdWl8hikQ%2E%2E&yargs=www.medscape.com">
-<b>1G</b>--><b>A</b> mutation</a>, what are the chances of a
DIFFERENT mutation than these entering the picture?  Or does
the same mutations just get passed on?  Would the kids of the
CF person with this mix have one or the other mutation or both?
  I ask because the Dr. asks what mutations are known in
the family before testing since I think some of the genetic tests
only test for 30 or 60 different (most common) mutations.<br>
<br>
Harvey

 

[my65roses4me]

<span style=" font-size: x-small;">Good question I am curious to
see what others say. Do you mean that only one parent carries both
of those genes or both parents carry one gene?

 

[julie]

Thanks Khristina, you are so sweet. Most CF centers don't recommend testing until about 6 months. I'm not 100% sure why (although I will be getting more info in the next few weeks on this) but I assume it has someting to do with their body taking time to "normalize" and adjust (metabolically, body fluid... and so on) after delivery. I do know there have been a number of negative tests under 6 months but then when the parents have the babies re-tested after 6 months or so, they have been positive (of course, not in all cases, but just as an example).

Harvey, that's a good and difficult question. Theoretically, and logically if one parent has the DF508 and the other parent has the 1717.... mutation you mentioned, then IF one or both mutations happened to be passed on, the baby/child would have those mutations.
BUT, as we all know, diseases/genes/mutations MUTATE over time and "evolve" (if you will). I'm not an expert in this area, but you have to leave the thought open there. It would be very rare that a mutation would just create itself from nowhere, but that's how CF got started, right??? Of course there is NO way to know or determine this, it starts to get very tricky as you can see.