Post # 1
Hi bees! This question might be stupid but I’m going to ask it anyway.
So FH and I have a loose timeline for when we’ll start TTC and I wondered how many bees saw a genetic counselor? FH and I don’t have reason to believe we would pass on anything like MS but there is always a chance we are both carriers for something we don’t know about and I’d like to make sure we’re okay. We also have a few concerns about autism that we want to look into (runs in my family and his) but I’m looking for more of a general answer.
I know this is something people do more while they are pregnant. But I don’t want to wait and risk something bad happening. My cousin and his SO saw a genetic counsellor because of the autism in our family and that’s kind of worried me.
Are any other bees planning to see a counselor? For bees who did see one, how helpful did you find it?
Post # 5
I saw a geneticist because of the fact that my nephew (sister’s) has CF. They were going to test for some other things as well, but CF is the main one. I found it helpful him telling me some different things about the disease and what our chaces are if I’m a carrier, if DH is, neither of us is, or if we both are.
I don’t have my results back yet because I am going for my screenings all at once, meaning I have to go in a week or so.
It was helpful I suppose, I will know excatily how helpful once I have the results.
Post # 6
My friend who’s parents are Muslim (arranged marriage & her parents are 3rd cousins), had genetic testing, I think it’s pretty standard in their customs but I’m not sure. I always said I wanted to do it but I’m not sure if it’s something you need to pay for. My cousins have an extremely rare degenerative disease so I kind of want to know if I’m a carrier.
Post # 7
I think you posted to the wrong board. You might want to ask the mods to move it so you get more responses.
Post # 8
We aren’t planning to see one unless one of the standard test’s comes up fishy. I do know a GC personally though so if you want me to ask her anything. Like how many people see her pre pg or something, let me know.
Also, something to think about when doing this before pregnancy. You said you don’t want to wait and risk something bad happening. But getting GC won’t prevent bad things from happening. If something DOES come up as being a high probability, will that probability keep you from conceiving?
We are going to have to be tested for CF because of our backgrounds, and my provider asked at my last Pap if we wanted to do it before TTC and I said no, because we’d still try, we wouldn’t not try to have a baby beacuse of a chance.
Post # 9
This may have changed, but when I was pg, they only suggested genetic testing if there was something significant in your immediate family. At that time, insurance only covered it if there was a very good reason to test. So definitely check if insurance would cover it or whether you would have to pay out-of-pocket, and remember that most dr.s will not recommend it unless there is something in your immediate family (othewise we could all be tested just on the off chance that we MIGHT be carriers for something).
Then keep in mind that if you get an answer you don’t want – say, that your risk is high for something – the only real alternative is to do in vitro and then test embryos before they are implanted, and that can be VERY costly.
Post # 10
@Ruby-Redshoes: I read an article not too long ago that said genetic testing is something people aren’t doing but should be. It was a bunch of doctors talking about how important genetic testing is. DH and I went for genetic testing right before we got married b/c we were planning on TTC right away, though our timeline has since been pushed back. He’s Jewish (both Ashekanzi and Sephardic) and though I’m Catholic my grandfather on my mother’s side was Jewish so I wanted to be tested for Tay Sachs. DH tuned out to be a carrier but luckily I am not. We also got tested for the other basic genetic things, Cystic Fibrosis, Fragile X and something else I can’t remember. IEverything turned out fine but it’s just good to have all the information.
Edited to add: My insurance and my husband’s insurance covered everything- both the apointment and the blood work.
Post # 11
@Ruby-Redshoes: My OB runs a VERY intense genetic screening panel for all her patients, regardless of age/risk factors.
Post # 12
I am not trying to conceive but for my son i was referred to a genetic doctor. I have diabetes, there is alot of cancer in my family. Before getting pregnant with my son i had two miscarriages, i am also R negative. Most of the genetic tests i think are recommended went they think there could be a problem. I was seeing a high risk doctor, so the test are ‘mandatory” also had an amnio.
Post # 13
@Ruby-Redshoes: I don’t know how much the things you are talking about can be dealt with by a genetic counsellor.
I would see one if I was concerned about a specific disease that is directly gene based. Something like autism or MS aren’t one of those things where this gene = the disease. They are more like allergies, certain genes might make them more likely to occur than in the general population, but a genotype won’t determine a phenotype.
I’m not saying a counsellor can’t deal with those things, I really don’t know. Personally though, for some wishy-washy stats like you would get for autism where there is still so much that is unknown I wouldn’t bother.
Post # 14
@AB Bride: Yeah, I’ve been reading up on genetic links to autism (definitely not an expert though) and I know that it wouldn’t really be worth genetic testing if that’s all we were worried about. I just used MS as an example because I couldn’t think of anyhing else in the moment, as you can probably tell I’m not very knowledgable about this.
DH and I mostly want to do genetic testing to make sure we’re not carriers for anything. Nothing like CF runs in either of our immediate families, but there is a lot we don’t know about especially on my father’s side. And while it’s not likely that we are both carriers for a rare genetic disease it is possible. If that were the case and we had a child with that disease I’d never forgive myself for not getting GT. We’re also planning to adopt and if there are any serious genetic conditions we could give our child then we might not go down the TTC route.
Post # 15
@MsJ2theZ: First of all, thank you so much for your offer of advice! Secondly, you’re right that getting GT won’t stop bad things from happening, but it will stop us from conceiving a child with a horrible genetic condition. FH and I are planning to adopt down the line anyway, and for us TTC really hinges on whether we could have a healthy baby or not. We would love to have a biological child but it’s not everything to us, so if there is a good chance we could pass on a genetic disorder to our kid then we won’t try for one. I probably should have mentioned this in my original post but my brain is totally scattered today.
Post # 16
@Ruby-Redshoes: I can understand just getting tested for everything. I doubt it would be covered by the provincial plan or our private plans though, and in that case I would have to weigh the cost, as well as the wait time. I don’t know what either would be.