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#1 of 61 Old 07-12-2014, 07:25 AM - Thread Starter
 
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Genetic Testing

How many of you "older" moms are having genetic testing done? I had it assumed that I would do it in another crunch group that I am in because I am in my late 30s, but I had no plans to do it.
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#2 of 61 Old 07-12-2014, 08:08 AM
 
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I'm 33 and I am going to skip it. I think I would also skip it if I was older. My beliefs are that lab tests can be faulty and I would rather not get worried over a faulty test. Same with the HIV test. My MIL got a false positive twice. My question is, how does the test work that it would give a false positive twice? I don't even want to open that box, so keeping it shut. I would probably feel differently with a different family history.

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#3 of 61 Old 07-12-2014, 08:13 AM
 
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Well...is 35 older? I NEVER test, it would never change my behaviour re: baby and some of the tests are dangerous .
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#4 of 61 Old 07-12-2014, 08:53 AM
 
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Our second child surprised us with what our pediatrician called "a significant birth defect"--cleft lip and palate. Knowing this, and knowing that we are now very highly genetically predisposed to have another child who has a cleft (our daughter's is the second known occurrence in my husband's family), we will be paying rabid attention at our anatomy sonogram this time around. However, I honestly think it's 80% for my husband's peace of mind, and for both of us to have the opportunity to prepare some fairly innocuous items--special feeding bottles for a child who would in all likelihood be unable to nurse, renting the world's best hospital-grade breast pump, a heads up to our daughter's cleft team that we'll be bringing them a newborn in February, etc.

That being said, however, we have declined all genetic testing. This is partly because I'm 32 and we have no known risk factors beyond cleft stuff, and partly because, like @JenniferC said, it wouldn't change our behavior in any way. Our children's hospital is ten minutes down the road, and heck, we've transported a homebirthed baby to the hospital once before--we could do it again if we were surprised in a different way next time. I have heard of cases where a baby presented with an issue and needed to be rushed across the hospital to a specialist, but my feeling is that the risk:reward ratio is still not in favor of testing there, given that those cases are so vanishingly rare.

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#5 of 61 Old 07-12-2014, 09:20 AM
 
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I'm 37, might do the nuchal transparency just for self preparedness purposes if there is a downs baby in there, otherwise not planning on much. Both sides of our families have histories of older mamas having healthy babes, so genetics seem to be on our side. My grandma birthed her last babe at 47!

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#6 of 61 Old 07-12-2014, 12:48 PM
 
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No testing here either. I was following one mamas story in the December due date that had a serious test come back positive. She had to wait a long time for amnio results to find out if the baby truly had the problem, and during that time she was mentally preparing herself to induce at 17weeks and bury her baby. In the end, the original positive test was wrong!!!! All that grief and heartache.... As it is I would have my baby no matter what so I have no desire to test. If something is wrong we can deal with it when it happens.

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#7 of 61 Old 07-12-2014, 02:15 PM
 
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My brother has spina bifida. So with my son we did the ultrasound where they measure everything. Neck, spine, limbs.. I was offered a amnio. But declined. If it came back that my child had any sort of disability I would love him no matter what. So the risk associated with the test isn't worth it to me.. I plan on doing the same thing this time around. Just in case we need to prepare for a special needs baby.
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#8 of 61 Old 07-12-2014, 02:16 PM
 
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I have the same mindset as cagnew. But I am not "older"

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#9 of 61 Old 07-12-2014, 02:45 PM
 
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We would never test because it wouldn't change anything for us before the baby's birth aside from potentially causing undue stress. Beyond the sonograms we decline everything else.

Can any one of you by worrying add a single hour to your life?
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#10 of 61 Old 07-12-2014, 06:20 PM
 
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When I was pregnant with my first at 37, we did the nuchal translucency test. Now, at 42, DH is super nervous about increased risks over 40, so we're planning to do the maternity 21 test (? New since DD's birth so don't know much about it). It's a blood test so no risks and will do a lot to relieve his anxiety. I'm not planning on any other testing; I think it can be an opening for more anxiety
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#11 of 61 Old 07-12-2014, 06:44 PM
 
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I also would never test. First, it wouldn't change anything either way. Second, those tests can create so muh stress and then turn out wrong. I know a woman who tested and they said the baby might be FAS and she quit drinking as soon as she found out she was preg at 6 weeks and never drank heavily before. Multiple tests, tears, immense stress and couple months later they were like "oops, sorry, test was wrong". That stuff can mark a pregnancy and introduce so much unwanted stress. Best to avoid. Plus they can be dangerous
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#12 of 61 Old 07-12-2014, 08:52 PM
 
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I am 36, this is our third, and we are not planning to do any of the testing. The more I read on the NT test, the rate of false positive was more than I was comfortable with and I wouldn't do any of the follow up testing that is more invasive anyway, plus, as a few have said, it won't change my behavior. My husband and I have some experiences that we feel we'd be equipped to look for whatever resources a child might need depending on what need presented itself beyond the typical if that were to happen. We do pay attention during the anatomy/development scan mostly for brain/spine development (had a friend whose baby had anencephaly so I am really aware of that) and heart development (another two friends who have each had babies with hypoplastic left heart syndrome). But beyond that, we just wait until birth.

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#13 of 61 Old 07-12-2014, 09:58 PM
 
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I am over 40 and planning on getting the materniT21 test which does not factor in age and does not give you crazy ratios and is similar to an amnio but is not invasive, blood is simply taken like any lab work.
Hey , we just want to know. It is better for me to be prepared if I know my child will be special needs, right?
Also, I think a lot of us older moms get a little anxious and want to know everything is alright and I say, go for it.
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#14 of 61 Old 07-12-2014, 11:31 PM
 
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I agree with @tracyamber . I'm almost 41 and I am planning to take the MaterniT21. I think it is very interesting that there is a non-invasive test that gives the kind of info it gives. We would not terminate, but we would just like to know. I have also heard of false positives, so definitely something to keep in mind.

(I did not do any type of genetic testing with my DD or DS (and they did not even have ultrasounds). There wasn't a test like MaterniT21 offered then, and besides I was not "AMA" then anyway.)

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#15 of 61 Old 07-13-2014, 12:27 PM
 
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False positives are inevitable with any kind of screening test especially if the underlying condition is rare. In my opinion it's not a reason to avoid them, just something to be aware of in case you get a positive result.

I'm going to throw out what will probably be an unpopular opinion, but I think it should be aired. That is, that we would probably terminate if we discovered something incompatible with life. In that case it wouldn't make sense to me to drag out the inevitable, and I would rather terminate when the fetus does not have well developed cognitive systems than having to watch a fully developed newborn die. Just my unpopular opinion I guess!
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#16 of 61 Old 07-13-2014, 01:23 PM
 
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Not unpopular, murrelet. I was just talking with my husband about this today. We both agreed to do an ultrasound as our only medical check-in. For both of us, if we saw some life debilitating abnormality it would be unquestionable about our course of action. I know it sounds selfish, but that's not the role I want to sign up for.
I began taking it even further, and began thinking about what would happen if our baby developed, say, a brain tumor at a year and a half (a friend of mine had this happen... he is now permanently disabled, and at 14 has the mentality of a 4 year old...). It was a surprise to him to hear that I would consider not intervening medically at that point, and letting nature play it out. It would be hard, but so is having to take care of a 4 year old for the rest of your life. Then I began wondering if it would even be legal for me to decline medical intervention... and I got myself all worked up, so decided to change the subject.

I admire all those on here who expressed that this is it, whatever showed on tests, or in real life. I began to feel like I was already a bad mother. Then I realized how much worse of a mom I would be to have a constant feeling that my child was a burden. I believe the souls who come through us know how we'd react, and come through us each individually to experience either the releasing of the possibility, or the coming to fruition with a disability. Neither is right or wrong. It's just our paths.

Thank you for sharing, murrelet. Your honesty allowed my own.


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#17 of 61 Old 07-13-2014, 02:25 PM
 
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Thank you for sharing, murrelet. Your honesty allowed my own.
Thanks to you too happyday8598. My intent was that we could all be honest here and not judge each other. We all have our own paths to walk after all.

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#18 of 61 Old 07-13-2014, 04:58 PM
 
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We all have our own paths to walk after all.
We haven't been in this group too long yet, but so far one of my favorite things about our DDC is the sense I get, over and over, that this sentiment is really shared and respected among all of us. We all have our own paths to walk. Sometimes they're really similar, and sometimes they aren't, but the mutually supportive atmosphere and honoring of each other's choices is a big deal to me. Thank you all!

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#19 of 61 Old 07-13-2014, 08:03 PM
 
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I had my first at 35. This is now my 5th pregnancy with only 2 live births. I am 44. The fact that my eggs are old is real. My concerns at 44 are not the same as they were at 35. I will also be doing the MaterniT21 test and have scheduled my appt. the false positive rate is very low as the test is more sophisticated than the earlier versions of the genetic screening blood test. And I will also do the level 2 ultrasound as I did with my other 2 children. I don't know what I would do if the results indicated a severe disability, but I do know that I want the benefit of having the information sooner rather than later.

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#20 of 61 Old 07-13-2014, 10:15 PM
 
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@honeybunmom
So true
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#21 of 61 Old 07-13-2014, 11:09 PM
 
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Sorry but is the sole purpose of materniT21 to detect down's.

http://m.thestar.com/#/article/life/..._a_rarity.html

There are so many wonderful people with downs, I think it's very misunderstood. Or maybe I am misunderstanding. I would *never* allow downs to change my course of action. I really hope I'm misunderstanding.

For anyone who wants to know more about Trisomy 21 (downs) there's an awesome documentary called Monica and David. Trisomy 21 might not be what you think. :'( sadness
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#22 of 61 Old 07-14-2014, 06:11 AM
 
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Sorry but is the sole purpose of materniT21 to detect down's.

http://m.thestar.com/#/article/life/..._a_rarity.html

There are so many wonderful people with downs, I think it's very misunderstood. Or maybe I am misunderstanding. I would *never* allow downs to change my course of action. I really hope I'm misunderstanding.

For anyone who wants to know more about Trisomy 21 (downs) there's an awesome documentary called Monica and David. Trisomy 21 might not be what you think. :'( sadness
I believe it tests for more, @Viola P . Here is a quote from the MaterniT21 website:

"What does it test for?
The MaterniT21 PLUS test reports on fetal chromosomal abnormalities; from common (trisomies 21, 18 and 13) to rare (sex aneuploidies, trisomies 16 and 22, and select microdeletions), all of the information that we report is clinically relevant. Sex chromosomal aneuploidies (X and Y) are reported in singleton pregnancies only. Sex chromosomal aneuploidies and microdeletions / duplications / additional trisomies will be reported as additional findings."

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#23 of 61 Old 07-14-2014, 06:39 AM - Thread Starter
 
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Sorry to post and run. This baby will be born around my 38th birthday. I honestly don't feel the need to anymore than I did with my child born around my 21st birthday. I would not treat the information differently. While I can understand the desire to prepare, I think that I would spend so much of my pregnancy stressing out and in disappointment, that it would be better for me to find out while I still have the labor hormones going through me.
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#24 of 61 Old 07-14-2014, 07:59 AM
 
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I believe it tests for more, @Viola P . Here is a quote from the MaterniT21 website:

"What does it test for?
The MaterniT21 PLUS test reports on fetal chromosomal abnormalities; from common (trisomies 21, 18 and 13) to rare (sex aneuploidies, trisomies 16 and 22, and select microdeletions), all of the information that we report is clinically relevant. Sex chromosomal aneuploidies (X and Y) are reported in singleton pregnancies only. Sex chromosomal aneuploidies and microdeletions / duplications / additional trisomies will be reported as additional findings."
Exactly. It tests for many things that would be incompatible with life (a category to which I do not include Down's). Trisomy 18 for example, can cause death within a short time of birth, and generally within the first year after much suffering.

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#25 of 61 Old 07-14-2014, 08:08 AM
 
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What I find really bizarre, personally, is that the risk of losing a baby from the amnio-based procedures can be as high as the chances of your baby actually having the issue they are testing for . Not worth it.
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#26 of 61 Old 07-14-2014, 12:16 PM
 
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I believe it tests for more..."
Thank God!! I don't understand why so many people are so negative about downs. People with downs have always seemed cheery and like everyone else, just different, you know?
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#27 of 61 Old 07-14-2014, 12:19 PM
 
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What I find really bizarre, personally, is that the risk of losing a baby from the amnio-based procedures can be as high as the chances of your baby actually having the issue they are testing for . Not worth it.
Yeah I never understood that either! My friend was thinking about doing that and I was like "what if it kills the baby and when they test the fetus I turns out it was healthy?" Just doesn't make sense to me
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#28 of 61 Old 07-14-2014, 12:37 PM
 
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I personally know a woman who was talked into an amniocentisis for AMA... She was 39. Her perfectly healthy baby boy died as a result. It was a horribly sad situation and she deals with guilt to this day. It has given me a different perception of some of the tests, for sure.

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#29 of 61 Old 07-14-2014, 02:20 PM
 
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I personally know a woman who was talked into an amniocentisis for AMA... She was 39. Her perfectly healthy baby boy died as a result. It was a horribly sad situation and she deals with guilt to this day. It has given me a different perception of some of the tests, for sure.

That is SO so awful.
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#30 of 61 Old 07-14-2014, 09:58 PM
 
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Yes, the Maternit tests for more than downs but honestly, I think if people are not wanting a child with down's then it is their prerogative. Thanks for the link too. Some of us may not have the skills to actually have a special needs child .it is okay to test and it is okay to test and not want to continue with your pregnancy if that is what you decide. I just want us all to be able to post our thoughts without being judged and not understood, right?
My last pregnancy I was pregnant with twins. One twin had trisomy18. We didn't get to choose. Our baby died in utero at 22 weeks. I will never forget him.
Oh I almost forgot. That is what makes the Maternit test different is it is non invasive and you simply go to a lab and have them draw blood... From your arm. No risk to your baby.
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