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Genetic counseling before TTC?

posted 7 months ago in Babies
  • poll: Have you gone through genetic counseling?
    Yes- Before TTC or very close to starting : (4 votes)
    12 %
    Yes- But after a period of time TTC and/ or difficulties : (3 votes)
    9 %
    No- Not yet but will in the future : (5 votes)
    15 %
    No- Never : (21 votes)
    64 %
  •  
    1.
    Member
    199 posts
    Blushing bee
    autumn865    August 6, 2011   Haddonfield, NJ

    So at my last visit to the OBGYN we talked about me going off the pill and she perscribed prenatal vitamins and a large perscription dose of folic acid.  My husband and I aren't at the point of TTC but I just wanted to get my cycles back to normal off the pill and make sure we did everything we could do to prepare for when we are, which would most likely be sometime between next spring. 

    I spoke with my doctor about my fears about my mother having several miscarriages and a stillborn baby that had spina bifida.  Although my doctor assured me that spina bifida is not genetic, she recommended genetic counseling.  From what I understand they interview you and your husband about family history? 

    I have been putting off making the appointment because a) we're not even trying and b) I'm already scared of what can be wrong and go wrong.  Has anyone been through genetic counseling?  How early did you do it?  Thoughts? 

     
    2.
    Member
    3,579 posts
    Sugar bee
    Mrs Grape    December 10, 2010  

    If we ever decided to TTC and deal with all the necessary fertility crap, we would sure as hell invest a little more time and money and do genetic counseling. My medical history is just scary, and I'm missing half of it (never met my father, don't know anything about him). It never hurts to be informed and prepared, imo.

     
    3.
    Member
    1,771 posts
    Buzzing bee
    septcabride    September 2010  

    A couple of months before I went off BCP I went in for my annual exam and mentioned to my doctor that we would be starting TTC soon.  She asked me a lot of medical history questions and then recommended that I get blood drawn for a series of tests.  Some of these tests were to test for genetic markers - cystic fibrosis, etc. - and others were to test my health to be sure that I was up on my vaccines and did not have any thyroid issues or anything like that.  All of this was covered under my insurance.

    I would recommend doing this before TTC (as long as your insurance covers it) because you never know what might come up.  A good friend of mine and her husband found out when she was 8 weeks along with their second child that she and her husband were both carriers for a very severe type of cystic fibrosis.  They had to make some really difficult decisions about testing, possible termination, and longterm care while she was pregnant.  The whole thing was scary and really stressful.  They had an ammino and everything was totally fine, but it was a horrific couple of months.  She always says that she wishes they had known the risks before TTC - they still would have had kids, but they would have been able to have those difficult "what if" conversations when it was just the two of them and when they had more time to make the decisions.

     
    4.
    Member
    1,912 posts
    Buzzing bee
    beekiss      

    I mis-voted.  I thought you were asking when you should get it done, I'd get it done before TTC.  My Fiance doesn't want me to get it done and won't participate.  Whatevs, I probably won't be doing it then b/c it's kind of useless with only one person's data and we don't have any familial signs of genetic defects and we'd still have kids regardless.  But if it's important to you, I'd do it sooner rather than later.

     
    5.
    Member
    1,771 posts
    Buzzing bee
    septcabride    September 2010  

    @beekiss:  That is not entirely accurate - there are MANY disorders that need two carriers for you to have any risk.  Cystic Fibrosis is one of these - if you get tested and do not have the marker, there is no chance your child will.  Your husband would only get tested if you test positive for the marker. 

     
    6.
    Member
    8,926 posts
    Buzzing
    Beekeeper
    Mrs.KMM    July 17, 2010   Atlanta, GA (wedding in Indianapolis, IN)

    I'd consider it but I don't absolutely plan to complete any genetic testing.  If my doctor recommended it, we'd look into it more and decide at that point.

     
    7.
    Member
    199 posts
    Blushing bee
    autumn865    August 6, 2011   Haddonfield, NJ

    @septcabride:  Thank you for your insights!  We did all the blood tests as you said and everything for me came out fine which is a relief.  I'm so sorry your friend had to go through what she did but thank God everything turned out alright in the end.  I know what you're saying though about being prepared and having discussions of hard things before having to go through them and make quick high emotion decisions.

    I think I am going to call and make the appointment because it certainly couldn't hurt, except to stress out about what they might say!  My husband is in the "wait until we have a problem boat" about all of this.  I'm the planner and the worrier of the two of us!

     
    8.
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    1,291 posts
    Bumble bee
    AprilJo2011    April 9, 2011  

    I have a question for those who did the genetic counseling; What were the consequences of it?  I mean, there is nothing that you can change about your genes.  Did you as a result decide not to have children?  Or did you have a talk with your SO about how you would deal if you had a child with xyz disease? Would you get the unborn tested and potentially make a decision about whether you will go through with the pregnancy?

    I understand and appreciate that genetic counseling can ease your mind about TTC if the results are good. But what if they are not? I'm torn about the benefits of it.

     
    9.
    Member
    5,404 posts
    Bee Keeper
    Running Elley    June 19, 2011   Fresno, CA

    We haven't done it and don't plan to. We plan on having children regardless and if something, heaven forbid, comes up we will deal with it then. We've definitely talked about possible scenarios and how we'd deal with them already. If something came up as even a possibility in testing I know that it would add a lot of stress to my already really over-paranoid personality. To me it's worth not having that stress until it's a definite.

     
    10.
    Member
    3,677 posts
    Sugar bee
    hilsy85    September 2010  

    It would be strange for you to get genetic counseling BEFORE being actually tested to see if you carry any of the genes for certain diseases/abnormalities. DH and I were both tested for a bunch of things; I came back as a carrier for one in particular, and he luckily is not. If he had been, we would have then been referred to a genetic counselor. But there's really no point in going to see a genetic counselor if you both are not carriers and if you're not even pregnant yet. 

     
    11.
    Member
    199 posts
    Blushing bee
    autumn865    August 6, 2011   Haddonfield, NJ

    @AprilJo2011: Exactly my fears!  It's the whole is it better to know or not know if there is something bad.

     
    12.
    Member
    3,677 posts
    Sugar bee
    hilsy85    September 2010  

    @autumn865: In this post, did you mean seeing a genetic counselor or getting genetic tests? Because you wouldn't see a genetic counselor until after you get tests done...so that should be your first step. 

     
    13.
    Member
    4,977 posts
    Honey bee
    Evie19    January 21, 2012  

    Ive heard so many times from women TTC and from doctors that stress is most often worse than actual fertility issues.

    I do not have a strong opinion because I have not started trying yet...however, I wonder if it may not be beneficial to go through genetic testing/counseling right off the bat.

    I think we will TTC for a year and then if nothing happens we will meet with the doctor.

     
    14.
    Member
    2,054 posts
    Buzzing bee
    skibobrown    July 31, 2010   CA (wedding in Bar Harbor, ME)

    We found out about a year before we got married that DH has thalassemia beta.  That's one of those genetic diseases that doesn't cause many problems if you only get the gene from one parent, but if both parents have the gene then you're in big trouble.  Given that we knew we wanted kids down the line, and that I'm from an ethnic group that also has fairly high rates of thalassemia, I was tested.  Luckily I don't have it.  I was glad to have that information for piece of mind.  The rest of the genetic tests, like the one for cystic fibrosis we didn't do until after I was pregnant, but those were cases where we had no reason to believe in advance that we were at risk. 

     
    15.
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    1,912 posts
    Buzzing bee
    beekiss      

    @septcabride:  It would be useless for me to get tested since even if I were a carrier for a disease, he still would not get tested.  So in my case, it would be useless since I would need his information to know if it would be at all possible to have a child with a disease.  He's made it quite clear to me that he's not interested in knowing.

    EDIT: The only way it would be useful is to know if there is a possibility, which even if I'm not tested would mean there's a possibility and there's a possibility of many other non-genetic diseases.  I am very much supportive of others getting tested if they feel compelled but this is a really sore subject for my Fiance.  He will not and does not want me to pursue it and I'm willing to chance it.  Like I said, only one person's information isn't enough to make a decision to not have children. 

     
    16.
    Member
    592 posts
    Busy bee
    dcdt212    July 19, 2014  

    I didn't vote but I did go through genetic counseling - it was during the middle of my pregnancy and not beforehand. If you are genuinely concerned about the possibility of birth defects speaking to someone may ease your mind (or stress you out more). It was good because the girl took our history and then gave us percentages of the chance of a bunch of different things. I was referred because they found a choroid plexus cyst in my daughter's brain at her anatomy scan. She went through the list of what it could mean and the percentge of each risk and what it could mean when presented with any other abnormailty. The counselor spoke in easy to understand language and was very informative. We were lucky and my daughter's cyst vanished on its own and it meant nothing. Like I said, if it will ease your mind then go. If it will just stress you out then don't. 

    Edit: We never had to have any tests done on ourselves because I was already pregnant. 

     
    17.
    Member
    215 posts
    Helper bee
    jimbert321    September 10, 2011   Southwestern Ontario

    I would consider genetic counciling, DH's family (including his twin sister) has several cases of Spina Bifida and although it's not commonly herditary it could be a factor for us.

    @autumn865 Your doctor might be recommending the testing because you've already had a baby with Spina Bifida, when you have a baby with it you're odds of other babies having the same problem go up.

     
    18.
    Member
    431 posts
    Helper bee
    red_seattle    April 17, 2010   Seattle

    We had genetic counseling during the pregnancy, as part of a CVS test process. We already knew before I was pregnant that we would need genetic counseling. IN your case, since your mother had multiple miscarriages (which may or may not have been due to Spina Bifida, but at least the stillborn birth was)-- I'd definitely want to do genetic testing before you get pregnant so you can wrap your head around tests and what you'd be comfortable with before getting pregnant. I felt it was helpful for us as we talked about having kids at least.

     
    19.
    Member
    1,771 posts
    Buzzing bee
    septcabride    September 2010  

    I have been thinking A LOT about this thread since it was posted.  When I first posted, I just gave my experience and did not really think about why my husband and I made the decision we did and why other couples would make a different decision.  Because I am thinking about that now, I wanted to expand a little bit on this topic. 

    I view getting pre-TTC genetic testing to be somewhat akin to getting genetic testing for the fetus when you are pregnant, which runs the gamut from basic ultrasounds to anatomy scans to CVS to amnios.  I belong to a midwifery practice and many of their patients choose not to have any testing - even ultrasounds.  This decision is completely respected (as it should be).  I think the amount of testing you choose to have - before and during pregnancy - should be a decision made in hand-in-hand with the decision you make about what you would do if there was a problem.  Many couples feel that they would have a child regardless of complications; those couples are obviously going to make a very different decision about testing than those couples that would consider terminating under certain circumstances. 

    What type of testing to get and when you stop is an amazingly personal decision and one that only you and your partner can make together.  (One of the problems with my friend's situation that I described earlier was that they let their parent's opinions get involved in their decision and that ended up causing a lot of confusion and relationship strain.)  Regardless of what any couple decides, I applaud Autumn for starting this thread - this is a very important topic and something I think too many couples don't discuss/think about until they are forced to.

     

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