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 Post subject: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 1:35 pm 
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I had the 1st trimester downs screening last week and they just called with the results and I'm freaking out a bit.

The test for Trisomy 13/18 can back great. My age risk is 1/500 and it came back as 1/10,000 which is wonderful.

However the downs risk for my age is 1/300 and came back 1/193. The fluid that they measure on the ultrasound was 2.8 which is not abnormal but is close to where they would have sent me immediately to the hospital for more checking..that measurement is 3.0.

I have to go for genetic counseling now and getting an amniocentesis has been mentioned.

Has anyone here gone through this? Had an amnio? I know that this doesn't mean that my baby will definitely have downs syndrome but I really didn't need something like this to happen during this pregnancy.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 1:46 pm 
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never did, but i wanted to offer hugs and good thoughts. you'll be on my prayer roll.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 3:18 pm 
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My mom had the same sort of thing when she was pregnant with me, had an amniocentesis, and I don't have Down's. So far as I know, false positives are pretty common with these tests. Hugs to you!

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 3:34 pm 
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jenna, i know that my friend chris who got pregnant for the first time at 38 went through this, and everything turned out okay. my thoughts are with you, i'm sorry it's freaking you out.


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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 4:09 pm 
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thanks everyone. I'm feeling a bit less freaked now. Apparently with the results I got I still have a 99.5% chance of having a healthy non downs baby. I got for genetic counseling next Thursday and they will discuss all the test with me more. I wish they could have just told me more over the phone but whatever.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 4:11 pm 
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I had an amnio with both as the risk for downs was elevated both times, (less than 1 in 100 both times) and we went ahead with the test (the amnio)because the risk of miscarriage from the procedure was less than the risk of the Downs, and we felt that we wanted to know. We'd have conitnued with the pregnancy either way but wanted to know in case we needed to make special arrangements.
The first time I was called at 7am and asked to come to the hospital straight away for my test results (PANIC!) and had to make the call there and then, and as this had never crossed our minds we had a very stressful day. The second time we knew there was the potential for this so were prepared and while it still was a quick turn around from results to amnio we at least were aware and had discussed. a lot less stressful.
The procedure itself is a bit ouchy but nothing bad, you're being poked with a really big needle after all, and it takes a wee while as they have to scan to determine where the baby is before they do it, and during. The results took about a week for us and that was a pretty stressful time too.
I'm glad we did it.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 4:17 pm 
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My neighbor got some scary results/stats with her second child, she was over 35. I don't believe she got an amnio in the end, but her son is totally healthy and downs-free.

I would be freaking out too, but the odds are still very much in your/the baby's favor.

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Last edited by ismloveyoubobbybrown on Thu Nov 04, 2010 5:29 pm, edited 1 time in total.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 5:27 pm 
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happy thoughts! happppppppppy thoughts.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 5:52 pm 
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My cousin had 2 scares like this with 2 different pregnancies and everything turned out to be fine. I'm thinking happy, healthy thoughts for you!

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 5:56 pm 
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my mother had a similar scare and everything turned out ok. i hope that everything turns out just fine, which statistically is just the truth, really- even 1/193 is good odds.

and just to say, i don't mean to be polemic, and don't judge anyone who chooses other than i do, but i personally would rather know and be prepared if things are not as expected. having a kid with medical issues is really, really hard, and if i had known beforehand, i would have probably done a much better job.

but anyway, happy thoughts, happy thoughts.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 5:57 pm 
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From what I've heard, there's a really high rate of false positives (or at least false hey-this-needs-further-checkings) with these tests. Very stressful! It sucks that you have to wait a week to find out more. I'll be thinking good thoughts for you!


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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 7:24 pm 
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I was 39 when I became pregnant with #2.
The dr gave me lots of numbers/stats/etc.
Freaked me out. I did more testing and more stats were heard. I never had the amnio though. I passed
on that and just allowed them to do blood tests on me and a more extensive ultrasound.
Then all was fine.

Happy thoughts coming your way.

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Last edited by erin32mc on Thu Nov 04, 2010 7:49 pm, edited 1 time in total.

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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 7:32 pm 
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I refused to have this test with both of my pregnancies. I knew I wasn't going to have amniocentesis no matter what the results, and it's just a screening test that flags a very high number of people with no real risk of problems at all. It makes me angry that doctors allow this to terrify so many people just because they don't explain it.


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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 10:02 pm 
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I hope everything turns out OK!


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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 10:10 pm 
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I hope everything's okay.


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 Post subject: Re: Freaking out a bit.
PostPosted: Thu Nov 04, 2010 10:55 pm 
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Yeah, this would freak me out too. You'll be in my thoughts and I hope your followup turns out great!

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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 12:29 am 
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Thinking of you. I know it's super scary not to know.


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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 5:57 am 
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the risk for my age is normally something like 1 in 1200, but after my first trimester screening they told me it was 1 in less than 100. even though the risk of something going bad with amnio is pretty low, i was not willing to on purpose add a risk that could be avoided. instead, we had a really in-depth ultrasound where they looked for a number of markers of downs syndrome. in doing that, they actually discovered an issue with her heart that they wouldn't have noticed otherwise -- but not the markers of downs syndrome.


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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 7:53 am 
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I went through this exact scenario with my oldest. First, it's normal. The charts are probabilities. So, you can have a one percent risk, but still have a down's baby. Basically, your test came back and it "aged" you in terms of your risk. That's all it means. I found out from my ob that the reason that the recommend amnio for women 35 and older is because that is the age at which the risk associated with amnio equals the risk of certain defects.

For my second child, I had certain required tests, but asked not be told the results unless it would alter how my pregnancy was managed. I refused to have an amnio. With the ultrasounds that are available, there are many ways to establish risks without using statistics to scare mothers-to-be.

This may sound harsh, and I am not a doctor and not advocating for the choices that we made, but the way the data was presented to me was misleading and by the time I had calmed down emotionally and could analyze the data myself, Mr. LL and I spent days worried as did other relatives. Then we had a follow-up ultrasound where certain measurements were made and it was ruled out anyway.

Hang in there! Big hugs to you! I know how unsettling this is.


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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 8:46 am 
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LebaLu wrote:
This may sound harsh, and I am not a doctor and not advocating for the choices that we made, but the way the data was presented to me was misleading and by the time I had calmed down emotionally and could analyze the data myself, Mr. LL and I spent days worried as did other relatives. Then we had a follow-up ultrasound where certain measurements were made and it was ruled out anyway.



This is how I feel about what happened to us too! In one routine ultrasound (I had more than a "normal" pregnancy due to my own medical issues) one of Dax's kidneys was large, and I think there was one other marker too, and this was on a Friday. My doctor wanted to send me to a specialist on Monday so we had all weekend to freak out. I don't even exactly remember when we got a clear answer, but the specialist told us that it was not very likely to be downs and he might just have a blockage in his urinary tract that could resolve itself (it did).
I feel like in my situation, the doctor had to tell us what she did to cover her asparagus! I mean, this may be the common practice, but it totally sucks and creates a lot of fear and worry. I wish they would have done more looking before freaking us out.

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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 10:32 am 
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LebaLu wrote:
This may sound harsh, and I am not a doctor and not advocating for the choices that we made, but the way the data was presented to me was misleading and by the time I had calmed down emotionally and could analyze the data myself, Mr. LL and I spent days worried as did other relatives.


this may sound harsher, but at the end of the day, the hospital/doctor's office is still a business, and presenting the data in a certain way might lead the patient to order more tests that they can charge her or her insurance for, in the name of "taking precautions." sorry to have such a bleak outlook of it, but i've spent a lot of time talking to doctors, nurses, and other healthcare professionals about the reality of running a medical profession now and. yeah. they're prone to overscheduling tests and whatever else they can charge for.


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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 11:08 am 
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I don't have much to add that hasn't already been said, but I just wanted to say that I'm thinking good thoughts for you!


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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 11:32 am 
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Jenna, i don't have extra knowledge or advice, but it sounds like you guys have decisions to make and possibilities before you, and i will be thinking and praying for you.


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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 3:32 pm 
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joanna wrote:
LebaLu wrote:
This may sound harsh, and I am not a doctor and not advocating for the choices that we made, but the way the data was presented to me was misleading and by the time I had calmed down emotionally and could analyze the data myself, Mr. LL and I spent days worried as did other relatives.


this may sound harsher, but at the end of the day, the hospital/doctor's office is still a business, and presenting the data in a certain way might lead the patient to order more tests that they can charge her or her insurance for, in the name of "taking precautions." sorry to have such a bleak outlook of it, but i've spent a lot of time talking to doctors, nurses, and other healthcare professionals about the reality of running a medical profession now and. yeah. they're prone to overscheduling tests and whatever else they can charge for.


Thank you SO MUCH for sharing your experiences. I'm feeling a lot better about this now. I think it's just that initial shock that made me all crazy which is understandable.

My husband is so angry that they do these test and then are very vague over the phone with you therefore scaring us and make me take more test and charge us/insurance more money. I'm starting to believe it to. I didn't have these test done with Reno and am now wishing i didn't have them done this time but a part of me is still glad that i did.

I'm really happy to hear that their is a more in depth ultrasound that should be available to me. At first I was "yes i'll have the amnio" but now i really don't want one especially if there are other ways to find out. I just don't understand how sticking a needle into the sack won't pop it...i just keep thinking about how needles pop balloons so why won't this pop the balloon that is in me! :)

Thursday can't get here soon enough!

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 Post subject: Re: Freaking out a bit.
PostPosted: Fri Nov 05, 2010 3:49 pm 
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More happy thoughts to you!

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