Cystic Fibrosis, were you tested before you TTC?

**miaclear** · 09-30-2005, 09:55 PM

I just had my preconception visit and my Dr asked me if I wanted to be tested to see if I was a Cystic Fibrosis carrier. I hadn't heard of this before in all the threads on CC. She said 1 in 26 people is a carrier, if you and your partner are carriers there is a 1/4 chance you'll have a child with the disease. I hadn't been tested for this yet cause I'm not sure what it would mean if it came out positive. Would we not have a biological child if we knew there was a 25% chance of having a sick baby? DH thinks we should be tested.

Thoughts?

**ejs** · 09-30-2005, 10:27 PM

If you do a search, you can find a thread I started on genetic testing.

DH and I are still deciding if we want to TTC. But in mid-October we are having genetic testing done - to find out if we are CF carriers and if DH is a carrier of other things. It is important to us to know this info before we make our decision about having children. But it is definitely a decision for each couple to make on their own.

eta: Miaclear, I bumped up the other thread for you (genetic testing).

**ds2003** · 10-01-2005, 03:36 AM

No, we were not tested before starting; however when we started seeing a reproductive endocronologist I had some testing done for cystic fibrosis and sickle cell.

**CapeCod04** · 10-01-2005, 06:49 AM

We are seeing an RE, so we were tested for cystic fibrosis and other stuff prior to proceeding.

**mrsfromage** · 10-01-2005, 09:16 AM

I hadn't been tested for this yet cause I'm not sure what it would mean if it came out positive. Would we not have a biological child if we knew there was a 25% chance of having a sick baby?

If you BOTH had the gene, you would have a 25% chance. To answer your question, you could wait until the amnio at 10 weeks and then decide to terminate the pregnancy if the baby did in fact have cystic fibrosis. Some people also choose to screen embryos through IVF for cystic fibrosis to ensure having a healthy biological child. From what I understand, cystic fibrosis can be pretty devastating. If you have the chance to have the test, I'd probably do it.

If only one of you had the gene, I think you are ok--no chance for the baby to get it, but someone can correct me if I'm wrong.

**Sevilla** · 10-01-2005, 09:49 AM

The only genetic screening we are gonig to do is the CF one if our insurance will cover it (our midwife told us it was an expensive test and that not all insurance will pay for it). We have a friend with CF and I know i would want to know our odds and if we were both carriers.

Originally Posted by mrsfromage

To answer your question, you could wait until the amnio at 10 weeks and then decide to terminate the pregnancy if the baby did in fact have cystic fibrosis.

You can't get an amnio at 10 weeks--15/16 weeks is the earliest you can get one. I think you mean the CVS test instead.

**Amie** · 10-01-2005, 08:53 PM

We were required to do CF screening when we originally we to our RE. I didn't think anything of it until I got the call that I was ++ as a carrier. I freaked out! I was so sure DH would be one too and we would either have to adopt or do something like IVF with PGD. Luckily, $700 later (insurance didn't cover his) we found out he wasn't a carrier.

If only one partner is a carrier, the child has a chance of being a carrier, but no chance of having the disease. If both parents are carriers, the kid has a 25% of having cystic fibrosis.

**karlatta** · 10-02-2005, 05:19 AM

We weren't screened when we started TTC, but when we moved on to the RE, we were. I am not a carrier, so they didn't have to check my husband at all.

My insurance didn't cover it either, but I only had to pay $250.

**jennylou** · 10-02-2005, 05:47 AM

Nope, and we saw an RE. Unless of course, she snuck that test in and I didn't realize it, but I'm usually full of questions when the needle comes out.

**albuquerque** · 10-03-2005, 07:38 AM

I was tested for that and a battery of other things when I first told my OB/GYN that I wanted to TTC soon. Turns out I *am* a CF carrier, which really surprised me. The next step was to get DH tested, which wasn't as simple as it should have been--it's just a blood test, but the OB/GYN doesn't do it for men and they said we should go to a primary care doctor. So, we made an appointment at a primary care doctor I'd been to years prior for a UTI--we're just reasonably healthy people, so aside from the yearly GYN visit for me, we didn't go to doctors. The doctor put up a huge fight against doing the stupid blood test--DH had never been there, he needed a physical, they didn't do genetic counseling....such a frustrating experience. In the end, they took to stupid blood sample, sent it to the stupid lab, and he isn't a carrier (thank God). I am shocked to hear that someone had to pay $700 for this test. I guess my insurance covered it (DH was insured through me then), but seriously that sounds like a lot of money. On the other hand, insurance *should* cover it, because even $700 is absolutely nothing compared to the health costs of having a child with CF.

As to whether or not to do it--I think that has to be an individual choice. For me, I always want more information rather than less. I'm glad to know I'm a carrier, and if DH was also a carrier I would have been devastated but I would want to know that, too. I don't know what we would have done if he had also tested positive but at least we'd have had the opportunity to explore our options, fully informed. I know that not everyone would feel the same way I do about that, though.