CF Carriers

[kpennell]

My husband and I are both CF carriers. We both have the same mutation (delta F508). We learned this news when I was six months pregnant with our daughter. The next three months of my pregnancy were very difficult--we met with genetic counselors and read book after book about CF. Thankfully, a genetic test shortly after my daughter's birth confirmed she was only a CF carrier.

CF has rarely left our daily thoughts since the day we found out that we were both carriers. My daughter is now 20 months old and we want to have another child. If you were in our shoes, would you consider not having another biological child based on the 25% chance that the unborn child could be CF positive?

 

[anonymous]

I think this question is going to be terribly difficult to answer on this board as either the poster may either have CF or may be a relative of a person with CF. It's an extremely personal decision.

My husband and I found out we were CF carriers with my 2nd pregnancy. My daughter was prenatally diagnosed with CF. While I was pregnant, my 4 year old son had to be sweat tested to check if he had CF, he does not.

I can not imagine my life without my 2 children. However, if I could take the CF out of my daughter 's body I would. I would gladly give my life for either of my children.

Having a child with CF has changed my life and my family's life forever, in good and bad ways. Some people take the chance and have further children with CF and sme without CF. You know the odds.

 

[anonymous]

I have two daughters, the eldest without CF and the youngest with CF. Me and my husband didn't know we were carriers of the CF gene until our youngest daughter was diagnosed with CF at 6weeks on screening. I have thought about what you are asking a few times, even though we aren't planning on having another child, like what if the first child was born with CF, what would we do if we wanted another?

Charlotte<img src="i/expressions/face-icon-small-happy.gif" border="0">

 

[JRPandTJP]

This is so hard...my first didn't have CF and our second does. If I had known we were carriers, I'm not sure what we would have chosen to do. Now that we know, we are very ambivalent about a third child, even though if he hadn't been diagnosed we would probably be trying by now. We would do anything not to have CF be a part of his future...with all that is being done on the genetic front, it may not even be a big deal in his time. However, as we consider a third child, we feel very torn about taking a chance again.

There are some insurance companies who will pay for IVF with genetic prescreening (I think there is a name for this, sorry, can't remember it). They feel it is less costly to do this than to cover a child with CF. Not sure if you have to have a CF child already for this to be covered or not. Basically, you have your eggs, your husbands sperm and they check to see which fertilized eggs do not have the CF mutation...then you have only the egg(s) without placed in your uterus. (please someone correct me if this is wrong) We may look into this is the baby bug just won't go away for us.

Look into your options and ask your insurance company. It may be a way to answer some of your questions. Just some thoughts...ultimately it is your choice and it is one that comes from your heart for sure.

 

[Ratatosk]

Preimplantation Genetic Diagnosis. There've been postings from others who have gotten insurance to pay for the procedure, although recently I read an article about someone who had this done for their second child and they happened to be the 1% who ended up with a child wcf. Apparently PGD is 99% accurate.

It is a personal choice. Some people feel comfortable with taking the chance, leaving it up to fate. Others, like myself and DH don't. Had we known ahead of time that we were carriers, would we have changed anything, no we wouldn't. We love DS very much, he's such a joy. But the amount of work involved with a CFer -- not complaining, there are a lot of things to remember -- medications, CPT..... I'm not sure having another child, possibly another one wcf would be fair to us or fair to DS. Liza

 

[kpennell]

Thanks for the responses. Hearing that other people have thought about similar issues helps to validate our concerns. Our families and friends are not familiar with CF, so to them our concerns seem unrealistic. It is a tough decision and definitely one that will require some soul searching.

 

[Ratatosk]

Once in awhile we get teased about "when are you going to give ds a brother or sister". Similar to when we got married and got the "when are you going to have kids". I tell myself that they (my inlaws or DH's uncles) mean well, that they don't realize or understand how upsetting their comments can be sometimes. So I just smile. DH and I have spoken at length about adopting, DS being an only child, pgd, just taking a chance. We've done a lot of soul searching... We waited over 10 years to have ds, we're not young parents. Lots of maybes -- maybe if we'd started having kids earlier (before we were in our late 30s).

In any event, we've got a beautiful, funny little boy. We feel very fortunate because he brings us such joy. His smile just lights up the room. L

 

[dyza]

The whole gene thing confuses me sometimes, my understanding is that not only do you need one gene from each parent, but these genes also need to be different. Take me for example, both my parents gave me the same mutation and I don't have CF, yes they are looking into me and I go for tests but this is to confirm that I don't have CF. Maybe it depends on the mutation...ask about this.
As for having another child, if it wasn't for our ages, 37 and 39, then yes we would have had another go for a third child, no question.

 

[anonymous]

My husband and I found out we were both carriers before getting pregnant with our first child (my screen came back positive, after which my husband was tested and found to carry a gene as well.) We decided to try for a baby, and I had a CVS at 11 weeks that showed that our daughter was just a carrier. We were relieved and estactic. Although we both wanted two or three children beforehand, we weren't sure about having a second one after learning about CF. We both went back and forth on it, but after a lot of thinking and praying, we both came to the same conclusion that our family was not complete, and we had another daughter. We found out, again through CVS, that this little girl DID have CF, and it was devestating.

Our younger daughter is now 8 months old, and such a joy to us! I cannot imagine our family without her, and I wouldn't change anything for the world. If I could take the CF away, I obviously would, but she's such a blessing in every way, and I am so glad that we decided to have another baby.

It is certainly a difficult decision, and I think a lot of people will have very strong opinions, both ways, as to whether or not you and your husband have made the right decision. But, it is YOUR decision, and not for anyone else to decide what is best for you and your family.

I'm sure you will hear opinions on both sides, but hopefully they will be non-judgemental opinions, because I don't believe there is a right/wrong answer. It's going to vary for each family struggling with this decision.

-- Jenica
Mom to Abby (2, w/o CF) and Ellie (8 months, w/CF)

 

[NoExcuses]

I can't tell you how many times I've been asked this question.

And as opinionated as I am - I dont' have an answer for this one.

I see positives and negatives of both sides......

So just pray a lot about the decision and hopefully you'll come to the right conclusion for your family.

 

[julie]

Craig,

Just fo clairification on the gene thing... the genes don't have to be different from each parent for a child to have CF. My husband is a Double Delta F508, as are a number of other members on this website.

So, you've been tested and they found two mutations? If so.... you have CF. If you've passed the sweat test, but you have 2 mutations... You have CF. If this isn't hte case, maybe I read it wrong? Anyways, I'd love clairification, I'm intrigued.

 

[thelizardqueen]

Craig - I'm a double delta F508. Both of my parents gave me delta f508, so you don't need two different genes in order to have CF. You just need two copies of the diffective gene. Because you've been tested and have two genes, that means you have CF.