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Author Topic: Pregnancy Screens  (Read 4996 times)
newttrack
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« on: December 19, 2008, 10:58:59 AM »

I am in my mid thirties and ten weeks pregnant. We are trying to decide if we should have the First Screen, which would test for some chromosomal abnormalities, including Downs. I would consider termination if an amnio or CVC confirmed that the baby had some severe chromosomal abnormality. (I'm not interested in a moral debate on the issue.)

I've  researched the first trimester screen, and I know there are a lot of false positives. I'm curious to hear others' experiences with pregnancy screening. Is it worth it?

It would cost us about $400. The second semester screening would be free with our insurance. However, I think it would be much more difficult to make a decision on whether or not to terminate when I am in the second trimester.


Thank you!
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ideagirl
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« Reply #1 on: December 19, 2008, 11:05:32 AM »

Can you even get results back before you're in the second trimester? You're two weeks away from there, after all. (Wondering if your question is moot.)
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newttrack
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« Reply #2 on: December 19, 2008, 11:53:31 AM »

Yes--they do the test at 11 weeks (this is the first screen, not the quad screen). You get your results back within a week. You can have the CVC the next week. Of course, if one chose to terminate, the termination would be at the beginning of the second semester (13 weeks). However, if I were to wait for the quad screen at 15 weeks, then get amnio at 16 or 17 weeks (you can't do CVC after 13 weeks), I would be 18 weeks by the time I had to make the decision to terminate or not. It's a difficult enough decision already, but I think it would be even more difficult for me after I felt the baby move. I know that might not make much sense to some people, that termination is termination, but for me, it makes a difference.

Ugh--what awful choices.
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bone_gal
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« Reply #3 on: December 19, 2008, 01:29:03 PM »

Yes, hard choices (and thank goodness we still have those choices!). I just had my first baby and I'm 37. I think they did that first trimester screen (although my insurance just covered it, so I didn't contemplate it too much). I knew I would have an amnio anyway, so I pretty much just went right to that as soon as I could have it.  I was referred to an awesome doc who performs many many amnios, so I felt comfortable. My regular doctor and this specialist both didn't do the CVS procedure (and it sounded more risky to me) so I waited for the amnio.

I know what you mean about it being hard to wait, and then contemplating what choice you'd make depending on the results. I would definitely confirm with an amnio and not make any decision based on the screens, as I know several people who had more worrisome screen results with perfectly normal babies.
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august
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« Reply #4 on: December 19, 2008, 01:40:12 PM »

Newttrack--since you are in your thirties it is almost a surety that you will get a positive test, probably false.  That is just the way it is for your age bracket.  I was told this by my doctor who is a perinatologist.

This does not mean the baby is abnormal, it just means you will have a high probably of having an abnormal baby.  For what it is worth, all of my friends, including me, took the tests and got positives but went on to have completely healthy babies.  We were all in our mid thirties.  It was incredibly difficult to endure.  For my last pregnancy, I opted not to take the early but to take the second screening.
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orangejuls
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« Reply #5 on: December 19, 2008, 02:08:16 PM »

Newttrack--since you are in your thirties it is almost a surety that you will get a positive test, probably false.  That is just the way it is for your age bracket.  I was told this by my doctor who is a perinatologist.

This does not mean the baby is abnormal, it just means you will have a high probably of having an abnormal baby.  For what it is worth, all of my friends, including me, took the tests and got positives but went on to have completely healthy babies.  We were all in our mid thirties.  It was incredibly difficult to endure.  For my last pregnancy, I opted not to take the early but to take the second screening.

August is correct--they told my cousin (who just had her second child at 35 yesterday) the same thing, although both her screens came out perfectly fine.  Four women in my birth group 2 years ago received false positives, and none of them had any troubles.  I always wondered if it was worth it if there wasn't some sort of family history of spina bifida or the like.  My husband & I talked about it & decided against it because we didn't want to worry unnecessarily.  With such variations on the results I just didn't see the point.

Good luck, and many, many congrats! 
 
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niceday
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« Reply #6 on: December 19, 2008, 03:26:52 PM »

Newttrack--since you are in your thirties it is almost a surety that you will get a positive test, probably false.  That is just the way it is for your age bracket.  I was told this by my doctor who is a perinatologist.

This does not mean the baby is abnormal, it just means you will have a high probably of having an abnormal baby.  For what it is worth, all of my friends, including me, took the tests and got positives but went on to have completely healthy babies.  We were all in our mid thirties.  It was incredibly difficult to endure.  For my last pregnancy, I opted not to take the early but to take the second screening.

August is correct--they told my cousin (who just had her second child at 35 yesterday) the same thing, although both her screens came out perfectly fine.  Four women in my birth group 2 years ago received false positives, and none of them had any troubles.  I always wondered if it was worth it if there wasn't some sort of family history of spina bifida or the like.  My husband & I talked about it & decided against it because we didn't want to worry unnecessarily.  With such variations on the results I just didn't see the point.

Good luck, and many, many congrats! 
 


This is simply not true. The nuchal translucency test -- which, by the way, is only a screening test and poses no risks to the baby-- has about a 5 percent false positive rate. It catches about 80 percent of Downs and even higher for trisomy 15 and 18. (Meaning that if the fetus has one of those disorders, the test will pick it up four out of five times. One out of twenty times it will flag a fetus that is perfectly healthy).

CVS (I'm assuming that's what you mean; there is no CVC test that I know of) is a diagnostic test and it will give you actual  results. (They look at the chromosomes directly). No mistakes there unless someone mixed up your sample. CVS is done before 13th week and Amnio in the second trimester. The CVS and Amnio have relatively similar rates of miscarriage and those tend to be very low --as low as one in four hundred for CVS or perhaps one in sixteen hundred according to a recent study for amnios-- in experienced centers. Make sure your provider does at least fifty a year.

If termination is an option, I'd consider carrying out the nuchal test (remember no harm to the baby) and perhaps decide on the CVS depending on your results. Frankly, if termination were an option, I'd do the CVS. Termination at 12-13 weeks is a minor procedure compared to termination at 19 or 20 weeks. (At 24 weeks, we're wading into stillbirth territory. The difference between 12 weeks and 20 weeks is just enormous).

OP, I am not saying the other posters did not really have lots of friends who had false positives. But the false positive rate is 1 in 20 and the experience of the other posters is just a statistical blip.

Later terminations are a lot more complicated physiologically, not to mention the psychological burden which you allude to. This isn't something I'd consider on the basis of $400.

On the other hand, if termination were not an option, I'd wait for the amnio because it is ever-so-slightly lower risk. The only question then would be "why do the amnio at all?" I can imagine you'd want to know ahead of time if you were going to have a special needs child.

(Btw, they can test Spina Bifida through a blood test without an invasive procedure in the second trimester.)

Good luck and I really suggest you find an informed provider or an up-to-date medical guide.
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bone_gal
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« Reply #7 on: December 19, 2008, 03:42:57 PM »

I think niceday's info is great. As I said before, I knew I'd do an amnio regardless of my first trimester screen results. Mine were fine (which is good for above 35!), but I knew I'd worry the whole time about having false results. So I did the amnio, and had my results back in one week. The amnio procedure isn't bad and I guess you can PM me for more info if you want it. I think if I had gotten troubling screen results I might have wanted the CVS more, but then again, it wasn't an option that any of my doctors presented, so I didn't push.

Also, regardless of whether or not termination is a possibility, I do think it's worth knowing if you'll have a Down's child, or some other condition. That gives you time to prepare logistically and emotionally, and to seek out any medical specialists who might be needed at or shortly after birth. A friend of mine had no prenatal screening for her third child, who was born with serious physical and mental defects. It took them completely by surprise and they were floored trying to deal emotionally as well as research what they needed to know.
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newttrack
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« Reply #8 on: December 19, 2008, 04:14:22 PM »

Thank you for all of the replies.

Aside from mixing up the letters on the CVS:), I do have most of the info about the procedures. I've talked to a counselor and have read every official pregnancy site there is. So in a way, I guess I was asking for anecdotal information. I don't have any friends here, and I cannot talk to my colleagues who had children later in life b/c I'm so early in the pregnancy. It helps to hear others' experiences.

The counselor suggested skipping all of the screening and doing an amnio at 151/2 weeks. That way, if I decide to terminate, the termination could happen a little earlier. My concern is that the rate of miscarriage varies depending on where you get the info. I do know that it is important to have a specialist who performs amnios regularly to do the procedure, but some sources say that the study that placed the miscarriage rate at 1 in 1600 is faulty. The center that would be doing my amnio places the risk at 1 in 350.

My concern with the amnio is that my son was born a month early b/c my water broke. They had to induce labor, as my cervix was not dilated. I worry about messing with my bag of waters, although the counselor could not tell me if my previous experience would increase my likelihood of miscarrying.

I have heard that advanced maternal age skews the scores on the blood screens, but I had my son at 33, and my score on the quad was 1 in 15,000. My counselor said that the last mother to have a baby born with downs in my insurance system had a score of 1 in 11000. My understanding is that the false positive for the first screen is 5%.

Again, I am just overwhelmed. It doesn't seem that there is much certainty beyond the amnio or the CVS, and those procedures scare me to death. However, the first screen is supposed to be 80% accurate, which I guess is pretty good. And, to be honest, there is no such thing as certainty or control when it comes to pregnancy. I think that is difficult for academics, most of whom are used to carefully controlling so much about our very planned lives.

Thank you again.
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thenewyorker
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« Reply #9 on: December 19, 2008, 04:58:38 PM »

I just got the results back from our CVS that I had last week. It was a relatively painless procedure. Depending on where the chorionic villi are located at the time of the procedure, the sample will be taken with er vaginally (through the cervix) to reach the if they are on the bottom or through the abdomen if they are on the top. Both types have a lower and lower percentage of miscarriage each year as the procedure is perfected. Our genetic counselor told us that the 1% chance of miscarry with either CVS or amnio is a statistic form the mid 80s. Twenty years ago! Of course I am writing this from NYC where these procedures are so very common because of high numbers of women post 35 being pregnant and more women under 35 who want to know definitive results asap. The percentage of miscarry for the abdominal type is lower that the transvaginal type. I went with the CVS (which includes nuchal screen) and thus did not have the nuchal screen first. I didn't want any uncertainties (I am 41). I also wanted earlier results due to the decisions I was going to make based on those results. It would be more difficult to terminate the pregnancy after an amnio since it is later. I am happy I had the test, although the week's wait was a bit tense. And I was so sure I was going to have a girl that I am still processing the fact that I am not! But of course you have the choice to know the sex or not.
As for the high positive based on age mentioned above: this is categorically untrue. Before I was even allowed to make an appointment for the CVS I had to undergo an hour's worth of genetic counseling and these types of issues were covered in detail.
The worst part of the CVS? Going in with a full bladder! They need the bladder full to get an accurate reading with the sonogram. My physician was running late from surgery and I was permitted to go to the bathroom to get rid of exactly one cup of urine. And they had the cups there for us to measure.
Good luck newttrack. I am also in my first year of a tt and will be telling my chair this Monday. I was waiting on the results from the CVS. Baby is due end of June so I have a whopping 1 1/2 month maternity leave (or do they typically just call that summer?). I have not been in my contract a year yet so I do not qualify for maternity leave.
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collegekidsmom
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« Reply #10 on: January 03, 2009, 11:58:46 PM »

When you say you are overwhelmed, I would say not to wait so long for tests.

 Try to remember that most likely everything is fine, and you will have a normal pregnancy and a healthy baby. However, if you find yourself obsessing over the odds, the test complications, and the possibility of miscarriage, the stress can be too much along with everything else in your life. If having any and all of the tests can help you have a more calm and enjoyable pregnancy, maybe you should just have the available tests. Termination is something you can deal with when and if the time comes. Most likely it will not. If I were very worried or stressed, and trusted my health care provider(s), I might sign up for any test that is recommended that could reassure me that my baby is just fine. It might make a lot of difference to your state of mind. The tests you mention are common in my area too, and of course, very rarely there is an issue-but that's the case with any test and with any pregnancy. Once your test results come back fine, you might feel a lot better. The tests you mention can provide you a lot of information if that's what you are seeking.
It's good to go with whatever you are most comfortable with-don't listen to too many other womens experiences with false positives or miscarriages, etc. Every situation is just too individual. Just follow your own instincts and inclinations.

.
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newttrack
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« Reply #11 on: January 07, 2009, 05:03:47 PM »

Thank you for all of the thoughtful advice!

I thought I would post an update.

I ended up getting the first screen (the first trimester screening with the high res ultrasound). The counselor said that it is more accurate than the second trimester screening, and that maternal age doesn't influence the score as much.

Long story short, the test results came out fine. The baby's risk of downs went from 1/180 (based on my age) to 1/1300, and the chances for trisomy 18 are 1/10,000. The risk of miscarriage from the amnio is greater than the chance of downs, so we have chosen not to do it. We will get an anatomy scan at 18 weeks, and if everything looks good, then the score will be even better. The CVS and amnio are the only tests that offer an absolute yes or no, but we don't feel like we have to know for certain. We are fine with the test results we received.

It was reassuring to see the baby during the ultrasound, and to be honest, that was worth the 400 bucks in itself.

Thank you again for all of the support.
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niceday
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« Reply #12 on: January 09, 2009, 09:35:28 PM »

Congratulations on your great results!
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soleilsun
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« Reply #13 on: January 19, 2009, 02:08:52 PM »

I am in my mid-30's also, and just found out a week ago that I am pregnant (appointment scheduled for 2 weeks from now). In the meantime, I am certain that I will go for either CVS or amnio. I am not worried about the tiny chance of miscarriage with either procedure - if it happens, it happens. The main advantage of the amnio to me seems to be that it also tests for spina bifida. Is the test through amnio more accurate than the blood test for spina bifida?
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niceday
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« Reply #14 on: January 19, 2009, 02:47:38 PM »

http://www.mayoclinic.com/health/spina-bifida/DS00417/DSECTION=tests-and-diagnosis

you can get the blood test and the ultrasound first.
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