February 2012 Moms

Kinda personal question, but will you opt for the testing?

So, my doctor is offering us a test done at a hospital where they do an u/s and blood work to check for any signs of down's syndrome.  It is done at around 11 weeks.  If they find anything, then you can have the CVS or amnio for further testing to confirm.  I guess as a parent, we have to make choices, but I feel so unsure about this one.  It is making me feel so nervous.  My DH and I need to have a real talk about how we feel about this whole thing, but I wondered if anyone had opted to have the testing or not have the testing and if they had any advice.  Thanks!
 
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Re: Kinda personal question, but will you opt for the testing?

  • I'm not going to do this. I'm not an older mom and I don't have any of the other genetic ties to Down's, and I also am the kind of person to only do what's medically necessary when it comes to doctors and my health.

    I will definitely pass this test. Proof that my baby has Down's wouldn't change a thing for me or the pregnancy.

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  • kms34kms34 member

    We had the test done with DS but I don't think we will this time.  I'd really love that extra u/s but the rate of false positives, etc is just too high.  We wouldn't abort due to Down's so it's really a moot point for us.  Also, my insurance didn't cover the blood work associated with the test last time so I paid over $300 out of pocket. That added some unnecessary stress as well.

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  • I think I will do it . . . I am older so I worry about it and I just want to know either way.
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  • We won't and didn't last time. We do not have any risk factors.
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  • I agree with most PPs. I wouldn't abort for Down's, so I won't do it either.

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  • sgb721sgb721 member

    Yes we will have the testing done. We had the ultrasound done at 13 weeks 4 days and found out our daughter had severe cystic hygroma and hydrops which caused heart failure two weeks later.

    Obviously this isn't why we had the testing done, it was reccomend by out doctor after 3 healthy ultrasounds and we were told our chances of a downs baby was really low. But because the ultrasound test is usually done by a specalist they can detect things the regular doctor may miss. 

    In our case, the appointment resulted in an emergency amnio and a lot of heartache but to this day I'm glad we went. I'm glad we found out what was going on rather then loosing a second trimester baby for unknown reasons. 

     PLEASE don't go into the appointment thinking negatively though. Think of it as a chance to see your love bug on the screen :)

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  • I think if I were at the 35-year mark, then yes I would do it - but I'm only 27 and there's no history in my family.  I think it is better to be prepared, especially if you do end up with a child that has Down's or a certain disability.  I'm the type of person that would want to get myself as educated as possible before the baby arrives so that I would at least have a handle on what I would need to do as a parent. 

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  • We didnt with our first and we wont with our second. We would not abort if we had a down syndrome baby so we dont see the point in doing the tests, it would just cause added stress.
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  • I'm at the 35-year mark and I'm not sure if we'll go ahead with the testing.

     

    My dr was really good at explaining the testing when I saw her last week.  She basically said that positive results give you a 1/200 chance that you baby has Down's.  There's still a 199/200 chance that it doesn't BUT depending on your personality even that 1/200 chance will likely cause you to worry so unless you are willing to go through with an amniocentesis then there is no point in doing this initial screening.  What really scared me was that there is a 1/52 chance of a miscarriage after an amnio even if you have a healthy fetus.    My dr had 2 children after 35 and she said that she refused the screening because she did not want to take the risk with an amnio.  Given my personality (I'm a bit of a worrier), I know that even though 1/200 is a small percentage, I would want to know.  I'm not sure that I can accept the risks of an amnio.

     

    As for what you would do with positive results, I wouldn't terminate but it would be good to be prepared if you did have a child with Down's.  You would have 5-6 months to start researching and have resources in place to deal with the extra challenges of having a child with Down's. 


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  • If insurance will cover it, I think we're going to do it.  We wouldn't abort for Down's, but I would want to be prepared to deal with a child facing that challenge.  I am going to speak with the doctor more about it at my 8 week appointment.
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  • imageCabbageCabbage:
    I will not.  In my opinion, this testing causes extra stress.  The only way I would consider it is if I planned to abort for Down's.  My DH and I would not do that, so knowing wouldn't help me at all.

     

    exactly this! 

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  • I will get the test done. I wouldn't terminate the pregnancy due to the results, but it's a way to be prepared for the future. Also, my insurance covers it so why wouldn't I take the opportunity to see my LO again?
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  • imagetahitiandreamin:
    As for what you would do with positive results, I wouldn't terminate but it would be good to be prepared if you did have a child with Down's.  You would have 5-6 months to start researching and have resources in place to deal with the extra challenges of having a child with Down's. 

     I agree.  We had the test done with DD1 and will have it with this one. 

     A good friend of mine has a little guy with severe developmental problems due to a chromosomal abnormality. She has often said she wished she could have known earlier, not for the purpose of terminating, but so she could prepare.  Tyler needs so much extra care, for example not all Daycares will accept him.  She just wishes she could have been ready  so that she and others could give him the care he needed.  

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  • Yes, if this is offered.  This is NOT just a Down's screening, it can check for lots of issues.  I know it's easy to say that "I would never abort no matter what the outcome is," and not to scare anyone, but the outcome could be much worse than Down's Syndrome.  It could be something not compatible with life outside the womb.  I would rather know that going in than be bombarded with it weeks later.
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  • imageStrawberryglobug:

    Yes we will have the testing done. We had the ultrasound done at 13 weeks 4 days and found out our daughter had severe cystic hygroma and hydrops which caused heart failure two weeks later.

    Obviously this isn't why we had the testing done, it was reccomend by out doctor after 3 healthy ultrasounds and we were told our chances of a downs baby was really low. But because the ultrasound test is usually done by a specalist they can detect things the regular doctor may miss. 

    In our case, the appointment resulted in an emergency amnio and a lot of heartache but to this day I'm glad we went. I'm glad we found out what was going on rather then loosing a second trimester baby for unknown reasons. 

     PLEASE don't go into the appointment thinking negatively though. Think of it as a chance to see your love bug on the screen :)

    I had a similar experience.  My son had a severe cystic hygroma with hydrops.  Ours was found at the first u/s so we never actually did the testing.  I will have it done this time though.  With my son we found out about the hygroma at 7 weeks,  we did not terminate and he lived to 28 weeks (this astonished the doctors).  We would have the esting done, not to terminate but to prepare.  we were able to prepare for the loss of our son.  We had NILMDTS come and take pictures when he was born, we had arrangements made for a service and burial.  We prepared emotional and at work.  It was hard but better then having a sudden loss.  This is a very personal decision.  Make sure you understand the risks involved and are prepared for the results.  I wish you the best.

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  • We will.  We don't have any risk factors but I don't see why not.  We won't abort if we see positive results but I think it will give us time to prepare and plan.  Also, if we choose not to do this we won't see an ultrasound until our gender scan and I'd really like to see the little one. Smile
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  • imagejldubb0626:
    I will get the test done. I wouldn't terminate the pregnancy due to the results, but it's a way to be prepared for the future. Also, my insurance covers it so why wouldn't I take the opportunity to see my LO again?

     This

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  • After being referred to a genetic counselor to answer more of our questions, we have decided to do the testing.  I am 37 and do have some fears about possible chromosonal & genetic disorders, so the testing will bring some reassurance.  If you have a chance to speak with a genetic counselor, I highly recommend it.  I found out that the likelihood of Down Syndrome for my age is really much lower than many of the pregnancy books indicate.  That said, the genetic counselor was able to help me weigh my options (which helped me be sure that we didn't want to go straight to amnio or CVS), and she was also able to refer me to the insurance office that confirmed the tests would be free.   Best of luck with your decision!

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  • I am over 35, so yes, I have already scheduled my NT scan/bloodwork.
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  • I'm almost 37, so yes I will definitely have an NT scan and bloodwork done.  Depending on the numbers we will do Amnio or CVS if needed. 

    We did it with our last son, and it was reassuring to get those numbers back after the testing.  The test checks for a multiple number of things other than just Downs. 

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  • Nope.  It wouldn't change anything for me, and if something was wrong, I'd probably get a little stressed out.
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  • HEmeryHEmery member
    This is our baby and I would NEVER abort. This test isn't for us and we have opted out. There was no thinking about it, it was a simple and fast NO.
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  • I did with DD and will again. At the time, I wanted to test just for an extra chance to see the baby (I live in Canada, and we only get 2 u/s unless medically necessary, and that includes this optional one). But I was undecided about actually wanting to know the results of the test until I read this blog post:

     https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

      Her beautiful, wonderful second daughter was born with Down Syndrome, and she didn't know about it ahead of time. In her blog post, she explains why she was happy she hadn't known ahead of time, and I fully respect that. But I look at the pictures of her, and the look of complete shock on her face, and I know I wouldn't want that to be me. I want the opportunity to prepare myself for something like Down Syndrome, so I can find resources and support ahead if time if necessary. I wouldn't abort. I would just try to prepare myself for what's coming. 

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  • Also, a headsup: that blog post is long, beautiful and will make you bawl. But it's worth a read, if you can handle a sob fest. The author writes so beautifully. 
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  • imagetickled_pickle:

    I did with DD and will again. At the time, I wanted to test just for an extra chance to see the baby (I live in Canada, and we only get 2 u/s unless medically necessary, and that includes this optional one). But I was undecided about actually wanting to know the results of the test until I read this blog post:

     https://www.kellehampton.com/2010/01/nella-cordelia-birth-story.html

      Her beautiful, wonderful second daughter was born with Down Syndrome, and she didn't know about it ahead of time. In her blog post, she explains why she was happy she hadn't known ahead of time, and I fully respect that. But I look at the pictures of her, and the look of complete shock on her face, and I know I wouldn't want that to be me. I want the opportunity to prepare myself for something like Down Syndrome, so I can find resources and support ahead if time if necessary. I wouldn't abort. I would just try to prepare myself for what's coming. 

    I just used Kelle Hampton's blog as my reply to her post on 1st tri.  I would MUCH rather know ahead of time to deal with my emotions before the baby was born.

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  • imageHEmery:
    This is our baby and I would NEVER abort. This test isn't for us and we have opted out. There was no thinking about it, it was a simple and fast NO.

     Hmm

    Just because you choose to have the test doesn't mean you plan to abort.  I want to know for my own piece of mind NOT because I would choose to abort. 

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  • I won't.  We wouldn't abort if my child has Down's, so to me there is no point in testing for it.
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  • HEmeryHEmery member
    imageDrBeepersWife:

    imageHEmery:
    This is our baby and I would NEVER abort. This test isn't for us and we have opted out. There was no thinking about it, it was a simple and fast NO.

     Hmm

    Just because you choose to have the test doesn't mean you plan to abort.  I want to know for my own piece of mind NOT because I would choose to abort. 

    ...And I wasn't implying that. 

    I'm simply responding to the post and saying what others have.

    Don't just take my response about not aborting, others have said it to.

    It's a personal choice that we all have to make, the end.

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  • imageHEmery:
    imageDrBeepersWife:

    imageHEmery:
    This is our baby and I would NEVER abort. This test isn't for us and we have opted out. There was no thinking about it, it was a simple and fast NO.

     Hmm

    Just because you choose to have the test doesn't mean you plan to abort.  I want to know for my own piece of mind NOT because I would choose to abort. 

    ...And I wasn't implying that. 

    I'm simply responding to the post and saying what others have.

    Don't just take my response about not aborting, others have said it to.

    It's a personal choice that we all have to make, the end.

    When I first read the post I missed where others had written the same thing.  I apologize for singling you out.

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  • I wasn't going to reply to this thread because I have a feeling it might get a bit heated.. but I wanted to share anyway.

    We will be doing the testing. No, we would never ever consider aborting because of DS. Never. First, I want to have another ultrasound to see our sweet babe :) Plus, if there is a chance of something being wrong, I would want the time to prepare myself. I would want to research and be really prepared for whatever was going to happen. I know the first test just lets you know if there is a chance that something is wrong... I still want that information.

    I can absolutely see both sides of this. It is totally understandable why people wouldn't want to know ahead of time. But also understandable why people would want to know.

    I hope people really don't think that the only reason you'd have the test is because you would abort if something was wrong.  

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  • imagetickled_pickle:
    Also, a headsup: that blog post is long, beautiful and will make you bawl. But it's worth a read, if you can handle a sob fest. The author writes so beautifully. 

    Wow, I just read the blog post and I did bawl. That was beautiful and amazing. I am absolutely in love with that little baby. Thanks for sharing:)

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  • We did not do the testing the first time around and probably won't this time either. 

    HOWEVER, we had a huge scare when DD was born with the pediatrician (random hospital assigned one) telling us she thought DD had some sort of syndrome. 

    DD's face was smashed during delivery and it took a couple weeks to heal.  Thank God the pediatrician was wrong (confirmed by other pediatricians next day and months of genetic testing) and DD has the most beautiful, perfect face today. 

    The doctor looked at me like I was crazy when I told her we had declined the testing.  I am still on the fence though if knowing beforehand would be better. All the worry and stress could not be good for the baby's development.

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  • Wow!  I just want to thank ALL of you for responding.  I didn't expect to hear from so many of you and hearing your opinions and thoughts either way is incredibly helpful.  We still haven't made our decision, but you gave us some great things to think about.  This board really is such a great resource.  Thanks again!
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  • My doc just brought this up today. Since there's no risk to the baby, I see no reason not to do it -- the newer tests have WAY fewer false positives, and I think I'd find it pretty reassuring.

    That said, we probably would abort if we confirmed with amnio that the baby's quality of life would be negatively impacted in that way.

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