Cystic Fibrosis Testing

kirst14 · October 2012

Hi! I'm not sure if anyone has asked this before, and I'm sorry if they have, but what are your thoughts on the Cystic Fibrosis testing? My husband and I are both Caucasian so he's all worried that we need to do the testing. I don't feel the need for it since I probably wouldn't terminate my pregnancy if we both turned out to be carriers, I wouldn't be able to. My husband, on the other hand, feels the need to spend the money on the testing in case we're carriers so we would know and have the options instead of waiting to find out. What did you guys do, what do you think?

Thank you!

wifeofadam · October 2012

We did not do it. I'm of the opinion that not knowing and therefore not stressing about it is healthier for me and my baby right now. I know that some people stress more when they don't know, so I guess you just have to determine what kind of person you are. Are you stressed knowing that it is a possibility and you won't be prepared? If not, why worry about something completely out of your control anyways. Even if both you and DH are mutated carriers, you still only have a 25% chance of having a child with CF. If you do get the results back and are both mutated carriers, will you stress the rest of your pregnancy about that 25% chance? That isn't healthy for you.

kirst14 · October 2012

I wouldn't stress out at all not knowing! What's stressing me out is that I'm pretty sure my husband wants to do the testing. He asked me this morning to call insurance to see if we're covered for it, but I don't see a point if I don't really feel the need to take the test. Maybe I'll just sit down with him tonight and talk to him about it a little more.

Aegis2005 · October 2012

My OB had mentioned it, however, I had it done the testing as part of my initial infertility screening, so it wasn't necessary. Being tested, and then having your husband tested (if you came back as a carrier) will just tell you that you're at an increased risk of a child with the disease, but it's not a definitive answer ... all it tells you is there's a 1 in 4 chance of your child having the disease. I believe you'd need to do an amnio from there to get more conclusive results.

It's a personal decision - for me I wanted to know, but my circumstances were different. I was doing IVF, and if DH and I were carriers we could have done genetic screening of embryos. I don't think I'd feel the same way at the halfway point of my pregnancy.

wifeofadam · October 2012

kirst14:
I wouldn't stress out at all not knowing! What's stressing me out is that I'm pretty sure my husband wants to do the testing. He asked me this morning to call insurance to see if we're covered for it, but I don't see a point if I don't really feel the need to take the test. Maybe I'll just sit down with him tonight and talk to him about it a little more.

How much is the testing? If it's a considerable amount of money maybe you could do the math and present him with the number of diapers that amount would buy or something like that.

walter7878 · October 2012

I did the testing. My doctor's office offers it and if the mother is a carrier, you have the option of testing the father. I like to know and be prepared as much as I can, so I do all the testing I can.

I am of the mind set that I need to do what I can to make this a comfortable pregnancy for me AND my husband. If mine really wanted to have the testing, I would probably do it to ease his mind, even if I didn't want to do it. (I found out the gender of this baby even though I didn't want to because my husband wanted to know.) I'm not saying you should bow to his very whim, but pregnancy is an experience for your husband, too, so you should consider his needs. That's just my opinion, obviously, but sometimes I think we all get focused on the fact that it's our bodies, and forget that this affects other halves, too.

Odds are in your favor that you aren't a carrier. And if you are, he has to be one, too, and if he is, you still have a 75% chance of having a baby without CF.

kirst14 · October 2012

+adamwife+:
kirst14:
I wouldn't stress out at all not knowing! What's stressing me out is that I'm pretty sure my husband wants to do the testing. He asked me this morning to call insurance to see if we're covered for it, but I don't see a point if I don't really feel the need to take the test. Maybe I'll just sit down with him tonight and talk to him about it a little more.

How much is the testing? If it's a considerable amount of money maybe you could do the math and present him with the number of diapers that amount would buy or something like that.

My OB said around $250 with insurance and about $800 without, which is so much money! I don't see a point spending that kind of money when I don't really feel the need to take the testing. I'm sure my husband just wants to make sure the baby is and will be healthy and so do I, but there's a good chance we're not even carriers. And even if we were, there isn't that high of a chance that our baby will end up with the disease.

kirst14 · October 2012

walter7878:
I did the testing. My doctor's office offers it and if the mother is a carrier, you have the option of testing the father. I like to know and be prepared as much as I can, so I do all the testing I can.

I am of the mind set that I need to do what I can to make this a comfortable pregnancy for me AND my husband. If mine really wanted to have the testing, I would probably do it to ease his mind, even if I didn't want to do it. (I found out the gender of this baby even though I didn't want to because my husband wanted to know.) I'm not saying you should bow to his very whim, but pregnancy is an experience for your husband, too, so you should consider his needs. That's just my opinion, obviously, but sometimes I think we all get focused on the fact that it's our bodies, and forget that this affects other halves, too.

Odds are in your favor that you aren't a carrier. And if you are, he has to be one, too, and if he is, you still have a 75% chance of having a baby without CF.

I guess I didn't really think about it that way. I'm going to talk to him tonight to see what he thinks and come to an agreement of how we both feel and go from there.

kirst14 · October 2012

Thank you ladies for all your help!! I feel a lot more at ease hearing your opinions and experiences!!

wifeofadam · October 2012

kirst14:
+adamwife+:

kirst14:
I wouldn't stress out at all not knowing! What's stressing me out is that I'm pretty sure my husband wants to do the testing. He asked me this morning to call insurance to see if we're covered for it, but I don't see a point if I don't really feel the need to take the test. Maybe I'll just sit down with him tonight and talk to him about it a little more.

How much is the testing? If it's a considerable amount of money maybe you could do the math and present him with the number of diapers that amount would buy or something like that.

My OB said around $250 with insurance and about $800 without, which is so much money! I don't see a point spending that kind of money when I don't really feel the need to take the testing. I'm sure my husband just wants to make sure the baby is and will be healthy and so do I, but there's a good chance we're not even carriers. And even if we were, there isn't that high of a chance that our baby will end up with the disease.

I'm totally with you. $250 - $800 is a lot of money for a baby. $800 would buy you diapers for a year.

ckalm5 · October 2012

I had it done but only because my baby had an echogenic bowel and the peri thought it would be best to test for ALL infectious diseases. If it weren't for the bowel and them really urging me to do it I proabably wouldn't have being that it is something like a 3% chance of a baby being born with it. Luckily my test came back negative

ljburrelli · October 2012

I have CF in my family and got the testing for that reason. I wanted to be better prepared after seeing my cousin deal with CF and his breathing treatments, hospitalizations, etc. My results were positive and I found out I am a carrier. My hubby decided to do the test and he is not a carrier. CF is very uncommon apparently in the Indian community. I think it is a personal choice. I opted out of all the other additional testing.

beanersmommy · October 2012

CF testing is routine in my doctor's office. It is done for the mother as part of the initial bloodwork.

ahhitsjess · October 2012

My husbands side has a few carriers, none known on my side. His cousin died at 2 years old from it (her parents went on to have 2 more children who ended up NOT having it). So we went ahead and had me tested, just for peace of mind. It turned out I was not a carrier, WHEW! Even if I was, we would then have him tested. If we were both carriers, all we could do would be to hope and pray! The chances are 1 in 4 if you both are carriers. So just because you are doesn't mean baby will get it! Best of luck!

Puck1182 · October 2012

+adamwife+:
We did not do it. I'm of the opinion that not knowing and therefore not stressing about it is healthier for me and my baby right now. I know that some people stress more when they don't know, so I guess you just have to determine what kind of person you are. Are you stressed knowing that it is a possibility and you won't be prepared? If not, why worry about something completely out of your control anyways. Even if both you and DH are mutated carriers, you still only have a 25% chance of having a child with CF. If you do get the results back and are both mutated carriers, will you stress the rest of your pregnancy about that 25% chance? That isn't healthy for you.

Exactly! I am a worrier, so in light of that, and the fact that we'd already met our deductible for the year, which meant that testing didn't cost us anything out of pocket, I opted for testing. For me it wasn't a question of keeping the baby or not, so much as wanting to be financially and psychologically prepared if there was a possibility. But if you (a) are not a worrier and (b) knowing that CF is or isn't a possibility won't affect how you handle your finances or other aspects of your life going forward, then there probably isn't much point in having the testing done.

2moms2b · October 2012

For FDA purposes, as part of my infertility treatments, I was tested (had to use a donor). Even if I wouldn't of had it with my RE, my OB does the major strains panel (40 strands I think) as part of the initial blood work at intake. If mom tests positive for any of those then the OB would have let me know.

My first step would be making sure your OB didn't run this panel as part of your initial intake blood work.

If your husband really wants the testing then just have one of you tested first as you would both have to carry for it to be a concern.

MrsW0615 · October 2012

I'm a carrier (sister has CF), and I don't know if my husband is or not. In my state, babies are automatically tested for CF once they're born. If it's not the same in your state, you can always opt to get baby tested. Preparation is pointless IMO, (except for peace of mind) because chances are you wouldn't know the extent of the disease. Sure, you could have your exact mutations pulled, but even then, some children with severe mutations do much better than those with milder mutations. It's a very individualized disease. A good pediatrician will test your baby and then refer you to a pulmonogist and endocrinologist if your baby is pancreatic insufficient. There's not much else you can do beforehand to prepare.

I, personally, would not terminate my pregnancy because of CF. It is a difficult disease to manage, but I feel that with new research developments, medications, and therapies, that a child with CF can still have a great quality of life with an extended lifespan. The biggest hurdle that I have witnessed with CF is the psychological aspect on how to cope. A good support system and understanding of the disease, your child's feelings, and your own feelings about it are key when managing this disease.

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