Pre-conception visit: Did you have one? Was it worth it?
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Genetic testing prior to TTC

posted 1 year ago in Babies
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    Honey bee
    abbyful    June 7, 2011   Kansas City

    Has anyone done genetic testing to see if you and your SO are carriers of CF, Tay-Sachs, etc?

    Did your OB/GYN offer these or do you go somewhere else?

    How much did the tests cost?

     
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    Honey bee
    kitzy    June 2011  

    fi was tested for tay-sachs at the doctor's office - it's just a blood test. insurance covered it completely.

     
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    Busy bee
    ladyox    May 16, 2010  

    Ditto what kitzy said, my OB did a panel of 9 tests that were completely covered by insurance.  Now that I am actually pregnant she has thrown out a few other tests for us to think about.  We've decided to do every blood test our insurance will cover - knowledge is power, right?

     
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    Buzzing bee
    MissGreen    July 2009  

    I had the CF carrier test done at my RE appointment. (Reproductive Endocrinologist) If it came back I was a carrier then they would have tested DH but I didn't. My insurance covered it and they said most do.

     
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    artbee    February 28, 2010  

    Insurance wouldn't cover it for me until after I was pregnant. My OB offered it, but we chose to wait until insurance would cover.

     
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    Derbybride    December 5, 2009   Louisville KY

    We didn't have any genetic testing done because it wasn't covered by our insurance. Our son was born with Cystic fibrosis and, in hindsight, I am so glad that I didn't know. We probably would have chosen not to conceive naturally to selectively implant healthy embryos. Thank god it didn't work out that way bc our son is the most amazing thing I ever could have asked for. 

     

     
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    Sugar bee
    hilsy85    September 2010  

    I actually wrote a whole post on this...our insurance does cover genetic testing prior to pregnancy, but even if it hadn't, I would have had it done anyway--no way I would want to wait til I was pregnant to potentially find out that the child could have Tay Sachs or something else. I was tested for Tay Sachs, spina bifida (or some other spinal thing), hyperinsulinism, Fragile X, and I think a few other things. I"m Jewish, which is the only reason I even thought to get tested (due to Tay Sachs). I did end up being a carrier, so DH got tested. THANK GOODNESS he is NOT a carrier :) So that's a huge relief! We both did the blood work at my OB/GYN office. 

     
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    Sugar bee
    Ms Mini    July 17, 2010   Medicine Hat, AB

    Me and DH have discussed it, because I have a family member with CF - so chances are that I am a carrier. We have decided to not have any genetic testing done, after discussing what the options would be if we were both carriers, and we knew it. We are not open to not having children, and the idea of selective implantation seems excessive given that even if we are both carriers, there is only a 25% chance of affected children. We will have babies, and we will love them no matter what, so the testing doesn't have a benefit to us.

     
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    octobermom    November 19, 2009  

    We did not have any genetic testing done prior to pregnancy. Our insurance does not cover ANY maternity, bloodwork, doctors appointments etc. and i am positive they would not cover genetic testing. If myself (family history etc) or my doctor felt it was necessary we may have but it was not suggested by our GP.

     
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    Mrs. DG    July 18, 2009   Seattle/Tahoe

    We did genetic counseling and decided that we didn't need to do the testing.  Our genetic backgrounds were different enough that it made the likelihood that we were carriers of the same thing highly unlikely.  I was reassured by the counseling though.

     
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    Honey bee
    Gerbera    August 7, 2010   NY

    @hilsy85:

    YAY! I am SO happy to hear this! I have been wondering what the results of your husband's test are. :)

     
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    Sugar bee
    hilsy85    September 2010  

    @Gerbera: Aw thank you!! Yes, we were VERY happy to get the results! :) 

     
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    Busy bee
    monalisa670    August 2009   Boston

    I just posted this question on another post but it belongs here instead. So I'm wondering what happens if say you find out that you're both carriers of a genetic disorder? It doesn't mean your child will definitely have that disorder, right? Is there any way in utero to find out if the baby does or doesn't? And what is selective implantation.. I'm guessing like IVF of only the embryos that don't have the genetic disorder?

    I never really thought about all of this stuff before but I had my preconception visit and my MD was going to do all this testing but held off because my insurance won't pay til I'm actually pregnant. Now I'm wondering what good it would be to know/ what I'd do with the info...

     
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    Buzzing bee
    regberadaisy    August 14, 2010  

    As far as I know IF both you and your husband are carriers of a certain genetic it increases the chances of your baby having that disease significantly (25% per first article). As oppose to if just one of you did your baby will not get it.

    Check out this article for more information.

    Is there a reason why you are concerned? Is there family history or are you of a ethnicity predisposed to certain genetic diseases?

    I think if either of those apply to you your insurance probably will cover it. If you are you should call your insurance directly and try to get them to pay for it.

    I'm Asian and my brother is a carrier of thalassemia so I asked for blood work during my preconception visits.

    http://www.americanpregnancy.org/gettingpregnant/geneticcounseling.html

     
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    mwitter80    December 11, 2010   Connecticut

    @monalisa670: We had discussed CF on the oher post. You can be made aware of the illness early on in the pregnancy. I'm not sure about the IVF question.

     
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    Busy bee
    monalisa670    August 2009   Boston

    Thanks everyone. No, I was just curious, I don't have any increased risk that I'm aware of. My preconception visit today just got me thinking about this and I realized I'd given it little thought/attention despite how focused I've been on TTC. Since my insurance doesn't pay anyway I'll just wait to decide what I want to find out until we're actually pregnant :)

     
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    Helper bee
    red_seattle    April 17, 2010   Seattle

    @monalisa670:

    1st Question: To start, the 25% some mention is not accurate in every circumstance. OK, so....  If you are a carrier for a genetic disorder, your chances of having a child with that disorder vary based on 1. what the genetic disease is and how that particular disease works, 2. whether your spouse is also a carrier, and 3. the age of the parents.  On top of that, sometimes fluke-y things happen. Sometimes, genetic information from the parents unravels incorrectly, and there's no rhyme or reason to it--- just dumb luck (as is often the case with trisomies). So, it's impossible to say what your chances are of having a child with a genetic disorder without getting into specifics. There are SO many diseases out there with SO many variables.

    2nd Question: Yes, you can find out if your child has a given disorder in utero. There are several tests they can do, each with a different level of accuracy, and each with different risks involved. Your dr will probably only recommend these tests if you're a known carrier, you're over 35, you've had a previous miscarriage (or several) with no known cause, or something showed up on an ultrasound  to cause concern.

    3rd Queston: Selective implantation-- if you're a known carrier of something and you REALLY don't want to have a child with that disorder, you can do IVF and then have each embryo tested for the disease before the doc implants them in you. This is called preimplantation genetic diagnosis or PGD.

    As for whether you should have the tests done or not-- it depends on your personal beliefs, how comfortable you are taking risks, and what your doc thinks your chances are of passing on a given disorder.

    Long answer--- sorry, but wanted to be super accurate too.

     
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    Busy bee
    monalisa670    August 2009   Boston

    @red_seattle: Thanks SO much! That was very informative. I really appreciate it!

     
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    Buzzing bee
    regberadaisy    August 14, 2010  

    @red_seattle:

    "As far as I know IF both you and your husband are carriers of a certain genetic it increases the chances of your baby having that disease significantly (25% per first article). As oppose to if just one of you did your baby will not get it."

    I did say as far as I know. Not saying that is the end all. And 25% per first article.

    Of course every situation will be different. That's just common sense, imo.

     
    20.
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    Honey bee
    roxy821    August 21, 2010  

    I went for my preconception appointment and my doctor asked the ethnicities of my husband and I to determine which genetic diseases to get me test for to see if I was the carrier. She then sent me to the lab in the same building to give blood for the tests and that was that. My inssurance covered the tests 100% and since my doctor instructed me to have them done, I just never 2nd guessed it. I don't have the list on me, but I believe it was about 7 diseases I got tested for to see if I was the carrier. Luckily I am not the carrier of anything.

     

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