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Old 06-01-2005, 09:02 AM   #1 (permalink)
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Hi ladies. Need advice about amnio.

I'm carrying twins (15wks) from fresh IVF#4, three day transfer of grade-a embryos. My OB tells me that the blood test for downs has an elevated rate of false positive results for woman carrying multiples. I've had false results given to me on a couple of occassions for IF treatment and pg tests.

A false positive would deffinitly stress me out. I don't want to think about having an amnio on both babies due to the 1 and 200 risk of m\c. We are waiting until the level-2 u\s around 18wks to determine if there are any growth markers. ???

It would be great to hear from anyone that has had a false positive or from woman that chose not to have the test or amnio. All advice is welcome.

34 yrs TTC 4 yrs, DH is 39
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Old 06-01-2005, 09:59 AM   #2 (permalink)
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I was just lurking and saw your post. I am under 35 so I don't post here. I'm close though. I'm 33. To explain this is my first pregnancy and had to use clomid and thankfully on the 3rd try I conceived and now am 22 1/2 weeks pregnant. I also have a thyroid condition and have to be monitored by a specialist during the pregnancy and I'm very overweight. Anyway, at my one appt. when I was almost 16 weeks they said they were going to draw blood for my thyroid and for the APF? blood test (not sure if that's the right name but it's the test for Downs and everything). Anyway my doc said that if he didn't call me by Wednesday of next week everything was ok. I didn't get a call and thought great. Well I go for my level II and because of the weight and because instead of drinking 3 oz. of water but drinking oj instead my bladder wasn't full to push up the baby and the baby was wired and doing flip flops the level II was considered incomplete because although they could measure the head measurements and verify the baby had all it's organs and it measured almost to the date being one day off and it weighed what it was suppose to and everything looked correct they couldn't do a cardio check up or anything on the major organs. So anyway (sorry this is long) the place rescheduled me to come back in 6 weeks because the baby would be bigger than and they didn't see anything that raised any eyebrows. Anyway, I go to my regular doctor at almost 20 weeks and he says he has to take more blood because they never ran the downs test (but the tech that draws the blood swore she marked it off to me but maybe this office lost the results). Anyway, I get a call the next Wednesday from my doctor stating he is scheduling me for an amnio the next am because the downs part came back 1/100 so there was a 1% chance my baby could of downs. I freaked out and was upset to find out of a ton of people that number one that test is time sensitive and shouldn't be done past even 19 weeks and that it is only a screening test and not a diagnostic test and I got so many responses from people stating that they got high risk results and their children were fine. Well anyway we go the next morning and the high risk doctor comes in and states that yes with the blood test there is a high false positive chance and if it was correct our baby would have a 1% and we made the decision right there and even before that if our baby had downs or not it wasn't worth doing anything to lose the baby that we had wanted so desp. She had said the level II didn't raise any eyebrows and I don't if you are past 12 weeks but there is a nucal scan too that you can get which wasn't offered to me because of my age but what I will request in my next pregnancy. what I am basically saying and sorry for going on and on is it should be your choice. Will it make a differnce if the baby/babies have down. If it does than yes by all means go for it but if it doesn't than why risk.
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Old 06-01-2005, 01:21 PM   #3 (permalink)
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HI - congrats on your twins!
This is such a personal decision. I opted not to have an amnio or other testing. I did have level II u/s and if they had found anything amiss I might have opted for an amnio, but they did not, so I did not. I did have an amnio to diagnose an amniotic infection after my cerclage. It was not painful at all. I worry more about an incompetent cervix while pg with twins than genetic problems.
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Old 06-01-2005, 01:47 PM   #4 (permalink)
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Appreciate the feedback.

My OB is deffinitly checking periodically for an incompetent cervix due to twins. I have a small percentage of placenta prevevia (sp?) which hopefully will move sooner rather than later. Both babies have been growing strong, but we still need to have the level-II u\s. I cannot see doing an amnio which is why the blood test seems unrealistic for me to even go through. I have to become more educated on what is evaluated during the level-II and discuss these important decisions more with DH.

A close friend and first cousin are telling me not to go through the testing or amnio because they had a false positive which was a nightmare. I don't think we would get rid of one or the other or risk loosing them both. It would be so great to take the blood test and have it come back negative. I'd like to know more about the higher false positive rate on the blood test with multiples. Orginally we thought it would be a no-brainer to do the blood test, but now we worry about a false positive result. ~Thx
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Old 06-02-2005, 11:51 AM   #5 (permalink)
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I was also 34 when pregnant with my twins. I chose not to do the amnio - my peri said the results would be difficult to interpret given that I was having twins (actually I started out with triplets - which would further confuse things). Technically, they recommend amnio for twins at 33, because there is a doubled risk of Downs (because there are 2 babies). But, the peri felt that with the nuchal scans, frequent Level 2 u/s they would probably pick up any problems. They can do all kinds of mesaurements which can indicate Down's (I can't remember exactly what - but things like length of arm to elbow). I just couldn't deal with any more testing and the risk of m/c, and the peri agreed that it was not necessary.

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Old 06-04-2005, 06:10 AM   #6 (permalink)
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Hi

I think you have been given some good advice from the other ladies here, I too have heard about some abnormally high risk results from multiple pregnancies.

I just wanted to say that having a Down Syndrome baby is not the "disaster" that the medical world thinks, in fact in our case it is very mild compared to some other "abnormalities".

My DD is happy and healthy and will have a great life, isn't that all we want for our children.

We have decided not to do any testing with this pregnancy either, although I am considered very high risk for another Ds child. We will take whatever we get and love the baby unconditionally.

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Old 06-04-2005, 08:12 AM   #7 (permalink)
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hello again

All your advice and guidance is helpful. DH doesn't feel that I should even take the blood test to screen for Ds because we don't want to take any risks with the amnio. Plus he doens't want me to stress out if the blood work comes back questionable. He wants to check out the Level II ultrasound before we make any future decision to do blood work. I'm thinking that we should at least take the blood test, but he's afraid that I'll get all worried if the probabilities come back abnormal. We're both against doing an amnio and he doesn't even want me to be concerned over any false-positive results.

We've had individual tests for chromosonal disorders which came back normal, but our tests wouldn't necessarily prove that together there would not be an issue. I don't know if an OB can understand Ds risks from just the level II. I also don't know why there is a higher degree of false positive results from taking the blood test with multiples. We don't want to do an amnio, but it would be difficult not to be prepared. So maybe I'll break down and at least do the blood test in a couple weeks. These decisions will probably be made together with my OB at the time of my level II screening. We just don't know enough about the testing processes, technology scanning, and statistics.

I thought by the time we had a successful pg with a heartbeat that everything would be smooth sailing. It's clear now that my worries have just begun. Anymore advice or insight would be very appreciated.

Thanks so much!
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Old 07-25-2005, 12:22 PM   #8 (permalink)
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Hi -- I just skimmed the thread and couldn't tell if anyone mentioned a nuchal fold translucency test. It's a 12 week test that looks for developmental clues to birth defects. It's much earlier than the standard level II. You could ask your doctor about that. Keep in mind the 1 in 200 risk of amnio is an average. Many experienced doctors have a much lower rate of miscarriage. Of course it's totally up to you, but if you are in a large city you can find someone who is not going to have a 1 in 200 chance.
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Old 08-03-2005, 02:00 PM   #9 (permalink)
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Its hard not to worry during pg.

I had a friend who had a false positive with her first pg and the Dr tried to get her to terminate the pg. She refused. She gave birth to a healthy baby girl. So yes there are problems with the testing.

Personally I refused to have the amnio done due to the high risk of lossing the baby. I did have the blood test done and it was fine. Even if it had been positive I still would have continued with the pg. The older one is for the blood work the more likely chance of a false positive.

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Old 08-04-2005, 04:20 AM   #10 (permalink)
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I guess by now you may have settled this issue within yourself but I just wanted to add that I was 42 when I had my son (healthy, happy little baby) and I knew I didn't want an amnio but my ob suggested I go and have the blood work screening and maybe that would "rule out" and I wouldn't have to make the decision (that I had really already made) Well of course it didn't and the genetic "counselor" (I think such positions should be filled by someone OLDER then 25!) suggested amnio because of the "elevated" risk. I asked her how I could be MORE at risk now and she started speaking of bell curves and mediums and I thought "oh my god, this is nothing but statistics!" Also the nucheal fold test showed the baby looked "good" and I told my husband "physically he looks fine so to me this is like diagnosing a broken arm with a blood test." Anyway, a week or two after declining the amnio, the "counselor" called and said "I was wondering what you had decided about the amnio?" I tell everyone it was like a SALES CALL! I said you could have inserted "new car, aluminum siding, lawn service" where she had said "amnio." So... and I completely agree with what many have echoed here, when getting pregnant is so difficult, even a "1 in 200" chance of miscarriage is unacceptable!! Further, after researching some info on the internet and finding way more info then I needed, I realized that Downs was the LEAST of my worries! When you start looking at all the stuff (but don't if you haven't!) it's amazing any of us made it here healthy and thriving!
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