Intro & Q about donor sperm & cystic fibrosis screening

Seagull2012 · April 2012

Hi everyone!

I have been a lurker on this forum for awhile - afraid to dip my toe too far in since i am still in middle of TTC'ing and experiencing some IF issues. But I have been active on 3T and recently Infertility forum. This question, however, i thought this forum might be able to help me with

Quick intro on me (more info in my sig)! I'm 31, married for 4 years - together for 12 with wife (32); i'm carrying, using my eggs & anonymous donor sperm. We tried for a year with IUIs = BFNs. IF Testing revealed Diminished Ovarian Reserve so we are prepping me for IVF in Aug 2012.

I just had some pre-pregnancy lab tests and RE called to tell me all came back normal except i tested Negative for CMV and Positive as a Cystic Fibrosis carrier.

My RE said three things:

For me to talk to a genetic counselor (have to get referral through ob/gyn office) to get more info on these results. Anyone else go through a meeting with genetics counselor? What can i expect?

That most sperm donors will be positive for CMV (i think i already knew this) but there is a low % that me being neg and them being pos will = virus in fetus so i could try to find a neg donor but that a pos one should be fine. Anyone else in this boat? Thoughts on this?

And the biggie....

That we need to make sure we have a donor who is non-carrier for CF b/c if we are both + as a CF carrier than there is a good chance our child will have CF. That is a chance we don't want to take if we can avoid it.

So - question - anyone know of sperm banks that test for CF? the other, local one we were using didn't but we have a list of national ones this clinic recommends that we haven't started looking into, yet. Just curious if anyone knew or had experience with trying to find a CF negative donor via a sperm bank.

(Also XP-ing on Infertility board)

Thanks!

ssg73 · April 2012

We used xytex and I just checked their site and the test all donors for cystic fibrosis. I met with a genetic counselor when we did my testing for genetic markers for downs and other chromosomal problems around 13 weeks. It was not all that involved but she was very helpful. I was a bio major and am a science teacher so I didn't have many questions regarding the genetics though. Your offspring will have 50% chance of also being carriers. If the donor was also a carrier you would have 25% chance of non carrier offspring 50% chance of carrier offspring and 25% chance of offspring with cystic fibrosis.

ssg73 · April 2012

oh I should add that carriers show no symptoms.

Kershnic · April 2012

Hi! I've seen you over on 3T and wondered if you would ever come over here. (I mostly lurk there since I'm in the weird middle land of having a diagnosis but not trying nearly as long as many of those women. Plus there's been a lot of drama lately...)

CMV status: I am CMV- and so are many people on this board and the LGBT internetz. My wife and I narrowed our choices to CMV- donors because it just felt like it wasn't worth any risk at all when we could find a CMV- donor we liked. Lots of the major banks list this as a criteria you can include in a search, and there are plenty of CMV- donors out there. That said, from everything I've read the risk is very very low, and obviously I would not be worrying about it if I were married to a man and he was positive.

CF: I am surprised that your local bank doesn't test for it. My understanding is that most of the major ones do. In fact, my doctor advised me that genetic testing for me was probably a waste of money because I am using donor sperm. We were told that our bank tests for the 32 most common mutations of CF, out of 97 total possible mutations. Any donor who is positive for any of the 32 is rejected as a potential donor. You could still theoretically have a baby with CF if you and the donor matched on one of the other mutations, but the chances is really unlikely.

There are several of us over here who are currently TTC (or planning to TTC in the future), so feel free to stick around if you'd like. We're a friendly group.

ball.and.chain · April 2012

Kershnic:
CMV status: I am CMV- and so are many people on this board and the LGBT internetz. My wife and I narrowed our choices to CMV- donors because it just felt like it wasn't worth any risk at all when we could find a CMV- donor we liked. Lots of the major banks list this as a criteria you can include in a search, and there are plenty of CMV- donors out there. That said, from everything I've read the risk is very very low, and obviously I would not be worrying about it if I were married to a man and he was positive.
CF: I am surprised that your local bank doesn't test for it. My understanding is that most of the major ones do. In fact, my doctor advised me that genetic testing for me was probably a waste of money because I am using donor sperm. We were told that our bank tests for the 32 most common mutations of CF, out of 97 total possible mutations. Any donor who is positive for any of the 32 is rejected as a potential donor. You could still theoretically have a baby with CF if you and the donor matched on one of the other mutations, but the chances is really unlikely.
There are several of us over here who are currently TTC (or planning to TTC in the future), so feel free to stick around if you'd like. We're a friendly group.

Pretty much all of this, except that Kershnic is way more informed than I am about CF!

I'm CMV- and have avoided CMV+ donors. It is kind of annoying to have another thing to rule out, but I'd rather avoid the really small risk. I've never counted, but it's always felt like about half the donors at California Cryobank (which we are using so far) were + and half were -.

lnelson20 · April 2012

Hi and welcome!

Our bank--cryogenic laboratories in MN--tests for CF. I was surprised to hear that yours doesn't. I guess I assumed that it was standard. Honestly, I don't remember seeing any donors that weren't negative.

Re CMV, my wife is CMV negative so we went with a CMV negative donor. the chances of issues if you use positive sperm are very low (at least from our reading) but the consequences are profound. We are pretty risk adverse.

For our first pregnancy, we did not do any genetic counseling. We did do the quad-screen at 16 weeks.

When I carried, because of some medical issues in my extended family (hemophilia, muscular dystrophy, etc.), we were referred to a genetic counselor. We brought in the donor information we had along with my family information. The counselor basically drew a family tree and inserted the various issues (all on my side) and told me we were pretty low risk. There is some possibility that I am a carrier for hemophilia, but we chose not to get me tested and instead to just have a conversation with the OB that if the baby was a boy he would need to be tested at birth. It was a low pressure, highly informative meeting. I was very glad we did it.

I hope you stick around the board and good luck with everything!

Seagull2012 · April 2012

(sorry - long reply!)

Thanks for the wonderful information and welcome, everyone! I feel much better about the CF+ issue and think we'll be fine finding a donor that is CF- ...and it's nice knowing the banks automatically screen for it. I now wonder if my local bank DID screen for it but i just didn't pay attention to the stat b/c i wasn't tested before i started my IUIs so didn't think it was an issue. Sidenote: now that i'm on the IVF route, it's scary to think how much i didn't know when i started this process last year (or maybe didn't want to know). I think i'll go back and look at my other donors' info just for the heck of it...

Also, you guys give me hope that CMV- donors are also out there. I think we would prefer that. And i'll definitely go to the genetic counselor meeting, now - at first i thought it might not be worth it but it sounds like a good thing to do, based on your guys' feedback.

This board seems awesome and i will definitely stick around here as i continue along my IVF journey. I really appreciate the support and warm welcome. My wife is actually going to be gone during my IVF (she has to leave for 4-6 months for training for her new job & we don't want to put off IVF due to my DOR diagnosis) so i'm circling the wagons the support. Hopefully one day i'll be on this board for not only the LGBT but also the Parenting part!!

Kershnic - I have to run to a meeting right now but i'm going to PM you soon!

luvahb · April 2012

me and my partner chose a donor from california cryobank..but fairfax cryobank was an option as well...they testt. ..gd luck..and we didnt dothecounseling simply because itt was twohundred fifty dollars and the sperm and procedure was already costly

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