U/S for down syndrome? +35 mama??? - Mothering Forums

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#1 of 22 Old 01-18-2008, 04:26 PM - Thread Starter
 
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Has anyone had the U/S that checks for downs syndrome? I've been offered it and told it's given between 11-13 weeks, so I need to give an answer in the next week or so.

I'm a little torn, but honestly I think I'd rather just wait and see what shows up in the delivery room for me. I don't think I'd be swayed by the outcome at all, but I'm not sure about what DH would want.

The only reason I can think of to have this would just be for another U/S for a peak at my babe y/k?
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#2 of 22 Old 01-18-2008, 05:45 PM
 
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From what I understand, an u/s doesn't confirm DS. They do a triple-screen blood test at about 11-13 weeks, and that'll say whether you're high risk or not. (being +35 may automatically put you in that category) Then, after you're determined high risk, they give you the option to have an amniocentisis which is really the only way to determine DS for sure.

I personally did the triple screen with only one of my 3 babies (don't even know why), and I was not high risk. But even if it did come back high risk, there's no way I'd have an amnio, KWIM?!

My girlfriend has a baby with DS and she said she's glad she didn't do the testing beforehand.

The only benefit I see is being able to plan, but I still vote no test.

Good luck, that can be a stressfull decision.

Andi - roller derby, slave to the hoop, birth junkie, lover of love, single mama of 4
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#3 of 22 Old 01-18-2008, 05:51 PM
 
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I'm not 35+. I'm actually only 26, but I've had the nuchal translucency ultrasound twice now, once each for both of my children. I have a family history of down syndrome (my brother has it) and I just wanted to be prepared for having a child with down syndrome. I had the scan both times, and they're amazing. They're so in depth, and I had good techs both times.

It's a pretty accurate test, but I am sure it would be terrifying to have it come back questionable. I know I wouldn't have an amnio to be 100% sure, so it was more of a test to ease my mind. I just wanted time to be prepared for a child with down syndrome. If you're not sure what you'd do, I'd urge you to decide that before having this test. Finding out your child might be sick is really tough. We had a false positive on a test for my daughter, and it was hard on both of us personally, and hard on our marriage.

It's a tough decision all around. I'm pregnant with a 3rd child, and not having the test this time. If we think there's a problem, we'll test later. All I really want to know is that I can have a safe vaginal birth. If anything else comes up, we'll take it as it comes.

Good luck in your decision, mama.
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#4 of 22 Old 01-18-2008, 06:20 PM
 
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It's a pretty accurate test,
That depends on how you look at it. The stated false positive rate is something like 3-5%, which means that if 100 women take the test x number will be negative (with x being quite a large number), y number will be positive, and 3-5 of the women in the "y" (positive) group will have a false positive (meaning there is actually nothing wrong with their baby). From that perspective, yes, it seems like an accurate test.

But if you dig deeper, you'll find that when you look only at women who tested positive, 97% of those are false. Meaning, of 100 women who test positive, 97 will have tested positive falsely.

It's also important to understand what a positive result means. What the test really returns is a "risk" of having a child with DS. So, your risk will be stated as 1 in z, etc. If the risk is high enough, they consider that a positive. So a positive result is NOT saying your child has DS, it's just saying your risk is "high".

It's also important to understand the factors going into the test. They check blood hormone levels, do the u/s, and they also factor in your age. So if two people had identical blood levels and u/s results, but one was 25 and one was 35, the 35 year old may get a "positive" while the 25 year old gets a "negative", even though all other things are identical.

So, the older you get, the more likely you are to get a positive result, and then you're stuck agonizing over which group you fall into -- the vast majority of positives, which are actually false? Or are you really positive? And the only way to know for sure is to get an amnio (and possible a CVS, which I don't know as much about, and it can't be done after a certain point).

In my case, I was not willing to take the risks associated with an amnio (although they can be minimized by seeing a skilled practitioner, etc.). So what would I learn from the first trimester screen? If I tested negative, I would feel some relief (although not entirely relieved, since there are also false negatives, although the rate is lower than the false positives), and just continue on with my pregnancy. If I tested positive, I would spend the next 6 months stressed out, wondering and worrying (you can do another u/s later on to look for soft markers, but again it won't be definitive -- amnio is the only way to know for sure), knowing in my head that the odds were it was a false positive, but still being scared to death.

So for me, personally, based on the increased likelihood of a positive (due to my age), knowing that most positives are false and would likely stress me out for no reason, and the fact that I wouldn't be willing to have an amnio, so the results of this test (negative OR positive) would not change my choices any, I decided not to do it. Also, there are no risk factors in my family, and my dd was born perfectly healthy. I also had a very deep, intuitive sense that all was well with this pregnancy and baby, and had already decided I didn't want any ultrasounds or to use doppler (unless medically indicated), so this choice came very easily to me.

It is definitely a personal decision, but it irks me to no end that docs (or mws) don't fully educate their patients about the test. Especially that 97% rate ... I have only seen that in one place, and was linked to it by a fellow MDC-er (sorry, can't find the link at the moment). But it was from a booklet for health care providers published by the UK government, so it's from a very reputable source, and not from someone who is trying to convince you not to have the test (it was actually sort of thrown in there, and I had to crunch some numbers to calculate the percentages -- you can trust my math, I'm an engineer ).

I hope this helps .

Mama to M (7/05) and S (5/08) my surprise !!!
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#5 of 22 Old 01-18-2008, 06:27 PM
 
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I've personally chosen not to. Most of the women I've seen who get it score in the 1:140-250 range and are very afraid. I've only seen 1 for whom it has been positive (she scored 1:5) and accurate.

Personally, we've chosen to look for soft markers at the main ultrasound and IF those are present we would consider an amnio to verify (and those can be done at any time, not just 14-18 weeks).
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#6 of 22 Old 01-18-2008, 06:40 PM
 
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I was at a recent training by the Down Syndrome group in my area. The new research is showing that woman over 35 are NOT at higher risk for having a baby with Down Syndrome.

I'm like you though, I figure I will deal with what I'm dealt when she gets here.

Good luck on your decision!
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#7 of 22 Old 01-18-2008, 07:14 PM
 
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I'm 35 and I had the nuchal translucency u/s a few weeks ago. The u/s came back normal, but the bloodwork put me at "an increased risk" for down syndrome. So basically it didn't tell us anything. They offered me the amnio to find out for sure, but we decided against it.
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#8 of 22 Old 01-18-2008, 07:22 PM
 
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Our tech told us that just the scan or just the bloodwork was meaningless; we had to hit certain scores in BOTH to be at risk.

I honestly only did it because I had the world's easiest first trimester, and was scared to death that I wasn't really pregnant. (Yes, even after hearing his heartbeat.) Seeing my baby was something I needed.

Also, I'm pretty... independently minded. I did a lot of research and knew the false positive rate, so I knew I wouldn't actually get worried if we got a weird result. But only you can know if you're able to do that.

Mama to EG, Mate to MD, Writer, Editor, International Jewel Thief.
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#9 of 22 Old 01-18-2008, 07:24 PM
 
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I'm 39. My parents had a child with T18 die at 3 months, so that is part of what motivated me to have the 1st trimester screening. After the screening I came back with a risk factor of 1:18, so I had CVS. Everything was ok, but the experience was agonizingly stressful. If I was 35 with no genetic risk factors, I wouldn't do the screening.
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#10 of 22 Old 01-18-2008, 07:42 PM
 
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Here is an interesting blog post on the topic of pre-natal testing, along with references and reading recommendations (written by an MDC member who is also a midwife).

Mama to M (7/05) and S (5/08) my surprise !!!
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#11 of 22 Old 01-18-2008, 09:10 PM
 
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Well I went straight to the Amnio and glad I did. Its not a matter of "well I wouldn't terminate anyway". Thats not the point. The point for me was being prepared. I already have a child with SN and I know the importance of being prepared and having support in place. Which with my daughter we didn't know about even with the Amnio I had with her.

By the way, our Peri told us the most common defect is heart defects. He said that was way more common than DS.

I know for me with my age it was 1 in 50 for DS. Or 98% chance of not having a child with DS. Which I did test negative for.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#12 of 22 Old 01-18-2008, 09:12 PM
 
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Also, just curious. Does anyone know of a woman having a MS from having an Amnio? I keep hearing "oh the risks, the risks", but I have never heard of anyone MS with it.

Now I did ask her Geneticist about our Peri's and she said they had 1 or 2 women ms (can't remember if it was 1 or 2). But he has done 1000's of these.

Anne, Mama to Conner 2/27/04 blahblah.gif  Gabrielle 2/6/06 W/LMC-TCS, Neurogenic Bladder, AFO & KAFO wearer, Neurogenic Bowel energy.gif & Delaney 5/12/08 mischievous.gif &  Beethoven cat.gif& Gizmo cat.gif

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#13 of 22 Old 01-18-2008, 10:04 PM
 
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We did it w/ both along w/ the triple screen and I'm glad we did. I was 35 y/o then 38 so I had a higher risk. We wouldn't have terminated and were aware of the false positive rate, but we wanted to know in advance, and had we not gotten the test we would have worried anyway because of my age.
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#14 of 22 Old 01-18-2008, 10:24 PM
 
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Well I went straight to the Amnio and glad I did. Its not a matter of "well I wouldn't terminate anyway". Thats not the point. The point for me was being prepared. I already have a child with SN and I know the importance of being prepared and having support in place. Which with my daughter we didn't know about even with the Amnio I had with her.

.
This is how I feel about it too. The assumption that anyone who has an amnio or CVS would terminate is simply wrong. Many of us want to know as much about our babies as we can and feel like preparing for special needs -- schools, educating ourselves and families, budgeting, etc. -- would be advantageous.

It is an intensely personal decision. I am having a CVS next week at a prestigious hospital that does the procedure regularly. The m/c risk is between .25-.5%. DH and I accept that. I know that this is a message board where natural/non-invasive births are more prevalent and I absolutely respect that. But some of us have personal reasons for choosing genetic testing. I advise people to educate themselves and then follow their hearts.

ETA: I just realized that you were asking about the nuchal scan. I had that too, with a previous pregnancy. It is non-invasive and was tremendously reassuring for me.
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#15 of 22 Old 01-18-2008, 11:56 PM
 
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I'm 39 and had the nuchal screening/level two ultrasound. I regret it.

Not the ultrasound but the bloodwork. It gave me a 1/15 odds for DS which they reduced to 1/18 after an ultrasound with no soft markers and I have to admit that it's totally tainted the pregnancy for me. I don't feel as if anything is off with my child and the ultrasound shows a healthy baby with no obvious abnormalities (except for a chorioplexus cyst which has resolved itself) so what would have been a minimal worry pregnancy has been slightly altered by the ever present "chance" that she has downs. We're prepared for anything and I can respect the desire to have reassurance from a negative finding, but your age just launches you into positive so easily. I'd rather have assumed the best all along rather than worry about the chance that something is wrong despite all evidence to the contrary.

It's your own decision. I just want to emphasize the impact that a positive can have. I even knew that I probably would be better off not having the bloodwork done but at the time thought, what the hey? It's only a little blood and maybe it will tell me something. But the worry is needless unless you're going to follow it up with something more technical like amnio.

I'll know for sure in +/- 7 weeks but everything points to a false positive.
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#16 of 22 Old 01-19-2008, 01:18 AM
 
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I'm 29 years old and I did it. I know my chances was low for down syndrome but I wanted to see the baby at 13 weeks. I was really excited to see how much he grew since the last time I had an ultra sound which was my 1st at 6 weeks. I was able to see his nose, mouth, the length of his little body and yes his sex, which was the best. The tech was so nice she even gave me a 3D and a bunch of pic. Anyways, the result came back and the chances was 1 in 10,000. It was worth it for me.
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#17 of 22 Old 01-19-2008, 12:37 PM
 
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Originally Posted by KatWrangler View Post
Also, just curious. Does anyone know of a woman having a MS from having an Amnio? I keep hearing "oh the risks, the risks", but I have never heard of anyone MS with it.

Now I did ask her Geneticist about our Peri's and she said they had 1 or 2 women ms (can't remember if it was 1 or 2). But he has done 1000's of these.
I've wondered this, too. I found a study published in JAMA that the real risk of miscarriage - if memory serves - is about 1/1,600.

Megan, loving her sweet rainbow1284.gif boys, born Aug. 2008 and Feb. 2011, and their sister, born still March 2007 candle.gif
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#18 of 22 Old 01-19-2008, 12:40 PM
 
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If it's just to ease your mind, then I'd say do it. If you'd terminate, you need to do the amnio or the CVS. I know plenty of moms on the Downs board I visit who had the NT test come back just fine and they still had a baby with Ds. So it's not going to be right all the time...but it gives you some odds that can help you in determining if you want further testing.

I had two u/s's that missed my dd's Downs. They won't find everything BUT they would normally find things like a Downs related heart defect, etc. that it *would* be good to know about before the birth (I shouldn't say Downs related, any heart defect would be good to know about, but kids with Downs are more likely to have certain heart defects so I can see where the us might be good, whether it dx's Downs or not).

Good luck it's a tough decision. I think if we do have another baby, I will get the NT and an ultrasound around 20 weeks just to rule out any defects. But that's me after having a surprise Ds baby, so take it for what it's worth

C ~ mama to (16), (13), (9) (5)

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#19 of 22 Old 01-19-2008, 10:17 PM - Thread Starter
 
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Thanks for all the replies, it's given me alot to think about. However, I really don't think I want to go through with an amnio...so I think that makes my decision pretty easy. I'll just rely on positive thoughts for the next 30 weeks be madly head over heels in love with whatever we are blessed with
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#20 of 22 Old 01-19-2008, 11:17 PM
 
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Thanks for all the replies, it's given me alot to think about. However, I really don't think I want to go through with an amnio...so I think that makes my decision pretty easy. I'll just rely on positive thoughts for the next 30 weeks be madly head over heels in love with whatever we are blessed with
It sounds like you know your heart, have a great attitude and are making a great decision for yourself! Best wishes!
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#21 of 22 Old 01-20-2008, 11:40 AM
 
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I just had my first u/s & blood test to sceen for DS - As far as I know, I'm not at any particular risk (I'm 28 and have no family history) but I *do* want to know if there are any problems. The boyfriend and I had long since decided that we would terminate a pregnancy that was shown to be highly abnormal. Luckily, it looks like everything is great!

Charlotte

Charlotte, mommy to Maggie (July 15th 2008) and Una (July 19th 2011)!
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#22 of 22 Old 01-20-2008, 11:45 AM
 
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My last 3 were born at 33, 34 and 37. I had no testing. I really feel that the womb is a sacred place and not our place/business to go poking around. I also want pregnancy to be a time of joy rather than worry and stress.

Blessings!

 Keri wife and Mama to  Cory 17,  Brendan 15,  Kerianne 8,  Avery 7,  Lilia 3
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