amnio suggested after 1st OB appt

hi ladies...

I wanted to see if I can get some insights and experiences about testing.

I know it's very personal, but I just would like to here some experiences.

at our 1st OB appt yesterday, we discussed CVS and decided against it (due to higher miscarriage risk after infertility treatments) and go with the amnio instead, which will give us a clear info and results
my next appt is not until OB again on 10/4,then the Peri on 10/16 which would be for the amnio, genetic counseling etc.

I am just a bit confused now, there won't be any testing before amnio? i.e. to see if there would be a higher risk so amnio is more justified? I think I have to call doc again to ask.

fyi, I am 2 days shy of 12 weeks today, with twins.

thank you all!
alexa

 

I'm assuming that part of this is because you already talked about the CVS and if I read your signature right, you are 35? I was 38 when I had the twins. With twins and being over 35, a lot of the blood based tests give you false positives - meaning, the test comes back that something is wrong, and it really isn't. The older you are, the tighter the test limits are, and with 2 babies, that really sort of just whacks the whole thing out of control. OK, it just doubles your chances for a false positive. We did the quad screen (blood) test because I didn't want to do a double amnio, but it came back that something was potentially wrong, so we went ahead and had the amnio. So, I think maybe since you've discussed the CVS and b/c of your age (I got to hate the phrase "advanced maternal age" - I aged just like everyone else!) if I am reading that right.

From the doc that did my double amnio, (I went to a different doc because my OB wanted me to have the best amnio possible, and she didn't think it was her - I went to a medical teaching university), the smaller the babies are in the amnio time frame window, the easier it is to do the amnio. Even with that, Beth grabbed the needle during her one. All was ok, though.

I'd call just so you are clear on your choices, though.

Good luck!
Emily

 

Around 16 weeks I had a blood draw for the AFP screen, which is a screen for spina bifida, and chromosonal abnormalities, but with twins the results are not as to be expected, because they just divide the numbers by 2, and each twin, could have different numbers, instead of exactly the same. (Not sure if that made sense). What I did do, is decline the amnio, until I got results back from my ultrasound, and I would base my decision on that. (Personally this week I turned down the amnio because the u/s looked great.) All the tests that they do though, unless it is the amnio, are just "screens". The amnio is the only test that will tell you for sure if there is a chromosonal abnormality. At least that is what I got from my last peri/genetic counseling appointment. Just curious, how old are you? I'm 33, and they originally suggested I get the amnio, but as I said, after my u/s results I declined.

 

I think the most important question to ask yourself in terms of evaluating the use of amnio is whether or not you would choose to abort if they found something wrong. If you can answer with confidence that you would not terminate the pg no matter how badly things look, then IMHO it's not worth it to do an amnio. There are very few things that they can do in terms of "fixing" a problem in utero. And most of those problems can be picked up through level II u/s regardless. One thing that many people don't realize is that even issues like down's syndrome can be determined with more accuracy through other means... and u/s done around 8 or 10 weeks, I believe, which shows a nasal bone is actually much more reliable at ruling out down's than the Triple screen or quad screen test. Just a little tidbit I picked up from my sonographer, who used to work for the perinatologist when I was pg with my twins. One of the reasons I opted out of the triple screen/quad screen this time around was b/c I had a bleeding episode... when you bleed out you are much more likely to get a false positive on those tests...and at the same time the risk of amnio was much higher for me b/c I had the bleeding going on. In fact, my doctor told me she wouldn't do the amnio on me even if I wanted to b/c the risks for m/c were significantly higher b/c of my bleeding issues.

I saw that you and your dh are over 35... which obviously increases the risks a bit..but not nearly as significantly as if you were both over 40. Obviously amnio gives you a lot of information about your kids... I've heard some people say that they would still want the tests done even if they don't plan on terminating just so that they could be prepared... personally I'm not sure which would be harder..seeing your baby, falling in love and at the same time realizing they have a big issue that will either end their life sooner than what should be or that will affect them the rest of their life...or finding out ahead of time about it, maybe having time to adjust...or maybe just having that much more anxiety about it before you have a chance to fall in love with your baby. It's a hard call looking at it from that perspective. But honestly, I've discussed this issue with doctors at three pregnancies now...and all three doctors have concurred that unless termination is an option the extra testing won't do a whole lot to change the course of the pg. Obviously if you get a level II u/s and they find a major problem, they could always do an amnio after that. I think personally that would be the route I would take if I were considering an amnio. If the babies look healthy, then why chance it... JMHO. i know you weren't asking about the blood tests, but something every twin mom should be aware of is that the triple and quad screen tests have much more chance of turning out false positive just b/c you are pg with twins... this leads to a lot more worrying and then to much more consideration of amnio.... My docs discouraged me from even getting the triple and quad screens just b/c they knew that most of the time they didn't turn out right for twin pg. I'd start with the u/s...and go from there... there is no reason why you can't simply tell your doctor that this is the way you want it. You don't have to do the amnio on their schedule... you can just tell them you want to wait until after you get a more significant u/s done. My first level II u/s with my twins was scheduled at 15 weeks... you're pretty close to that, so why can't they just send you a little earlier to get it done before you decide on your amnio...

 

I'm also 35 and declined the amnio after the Level 2 u/s at the peri's office looked good- that was enough reassurance for me.

 

I declined all those tests as with both my pregnancies as it wouldn't have made a difference one way or the other. Didn't think it was worth the risk.

 

From your post, it sounds like you went into it talking about an amnio, so maybe that's why they never offered other testing first? You can certainly do u/s assessment first and then decide if you want to have an amnio or not.

 

I declined amnio as well. For me, it just wasn't worth the risks associated with it. We weren't going to abort in any case. The higher level ultrasound looked good, and was reassuring to see as well.

 

Hi, i am just about as far along as you and just had my Dr.s appt. yesterday where we discussed all the tests. I was offered the Cystic Fiboris test, the Quad screen and the nuchal fold test. All of those three needed to be done ASAP from what my Doctor told us. Our Doctor also had twins and we spent an hour with her yesterday in which we discussed our potential reactions to the test results, the false postives and much more. We decided not to do any tests aside from the level 2 us. As someone else said this is a very personal choice.

 

This is ultimately your choice. I personally opted for the amnio for a variety of reasons. I am 35. As pp have stated a lot of the "typical blood tests" lead to false positives for twins. However the level II ultrasound can detect a number of abnormalities. I did a lot of research and discussed percentages with the peri performing my amnio. The numbers on the internet were much more risky than my peri's office. I felt confident in their office performing the test and had A LOT of peace of mind post amnio. I admire everyone who says it doesn't matter, but the results did matter to me. I don't know what I would have done had a result come back negative but I wanted to know in advance when options were available, including options beyond termination.

I would talk with your ob and ask about the office performing the amnio procedure. I encourage you to find out what their success rates are and make a choice. I would find out when your level II will be performed. I actually had my amnio prior to my level II.

The procedure itself wasn't nearly as bad as I thought and as I said it gave me some peace I was looking for. HTH.

 

Alexa, I did an amnio but waited till 20 weeks!! The risks are lower the longer you wait (as I was led to believe). I might wait until then if possible, but if there is a GOOD REASON to do it that early, then I guess you can go for it.

Now, the actual procedure itself wasn't AS bad as I imagined it would be. When they put the needle in it stings and you feel pressure. But it's not pain that you can't endure, really. They put dye in one sac (unless you only have one) so they can tell that they are not testing the same baby twice. (That will get expelled in the potty).

On my 2nd baby, they put the needle in and it was in a spot that burned quite a bit more and she "wasn't letting go of her fluid" is what they were telling me. Somehow, she was blocking the fluid and it took FOREVER to get enough out. That one hurt considerably more, but I think I was more tense because it was taking SO long.

You'll need to be able to basically do bedrest for the next 12/24 hrs. and really DO take it easy. You won't feel any different, but you'll need to just believe that it's the best way to not have any complications from the procedure. I think I took tylenol afterwards.

I hope this helps! :hug99:

eta: I just read some of the above posts. I'll give you our reasons for doing it so you have all different varieties of answers. (Not because I am right, I did what I felt was best for us.) We did the amnio because we had some "off" #'s on one of the tests and I was over 35. I needed to know what was going on. If I was going to have to prepare for a child with difficulties of any kind, I needed to find support and get myself ready in the best way possible. That's not something that I was prepared to be surprised with in the delivery room. (Husband might have seen things a bit differently, but he is a man )

fwiw - when I joined this board in expecting we had a gal on here who did decide to terminate one baby because of defects of some sort. It was very heartbreaking for her and her family and she never came back. I don't know how she faired. I wish she had continued to post here, but didn't.

 

I had blood work done (and a nuchal fold u/s) and decided that based on the outcome (keeping in mind the chance for "false positives" is about 20% with twins), we would take it from there. For me a negative outcome could have resulted in me terminating the pregnancy.

Anyway, I was 33 at conception and giving birth. My chance for Down's came back 1:7200 (should have been around 1:300) and no increased risk for T18 (no numbers were given b/c of twins). Nuchal folds measured 1.4 and 1.7 (below 3). Later blood work for neuro damage also came back negative.

Based on this I decided not to do an amnio. Although it's not a 100% guarantee I felt confident enough.

Although you are AMA you don't have to do an amnio. It's a choice and it depends on what you want to do with the information (terminate, prepare, etc.).

I think the risk for m/c is 1:200 with amnios but some docs do way better with sometimes even 1:600 (a local doc here). So that's something to check as well!

 

dear all,

thank you so much for all your inputs and information.

fyi, I am 35, we used donor sperm and the donor's age is 27, me and donor have no history of down's or any other abnormalities in family.

so I will call my OB today and ask her about other testing before, to see if I would have numbers that show that there is a risk, I will also ask about when we would do the level II u/s.

great day to all!
alexa

 

I didnt read all of the responses..so forgive me if I am giving you repeat thoughts...

I am going to be 37 when these babies arrive I knew from the beginning that terminating the pregnancy was not an option for me, no matter what were to happen...it is my personal point of view, I completly understand that other people may feel very differently, and that is fine. I have been very concerned about chromosome disorders due to my age and recently they saw choriod plexus cysts on an ultrasound. (which resolved and I was told not to worry about it..but anyway) I went with the blood screen, and had decided that based on those results we would decide to have an amnio or not. My results were negative, then we heard about hte cysts.... At my appt with my hi risk ob, which included genetic counceling, we discussed that amnio is still an option for us, but have decided against it. For us it will not change anything, we plan to have these babies no matter what. So the risk that something could go wrong, however small the risk, was not worth it to me. I think thats the decision you need to make for yourself. They told me that based on my blood tests and the US results that risk of an issue is minimal and if I really really needed to KNOW for sure I could have an amnio...but his exact words were "I have done hundreds and hundreds of them...but I don't NEED more practice" Unless termination of the pregnancy is somethign you would consider, you need to weigh the need to know against the risks, however small. just my .02 fwiw...


eta:my dr also told me the pick up rate for TS18 in ultrasounds is between 85-95% ( and he would wager on the high side) and downs about 50%...so there is a lot they can tell you from the scans..esp a level 2 Hope that helps some! Good luck!

 

I am considered high risk because I will be 35 when the babies are born and I didn't decide what to do about having an amnio until after I had the results of the quad scan and had the anatomy scan with my peri. If something would have come up questionable on the bloodwork or ultrasound I would have considered it, but since both results were normal and did not show any signs of possible problems, I didn't have an amnio.

Since the quad screen and anatomy scan don't carry a risk for possible miscarriage - I would definitely ask for those first!

 

thank you all!

just talked to OB, she understands my concern, we decided to go with sequential screen and u/s first...then take it from there, if anything showing, we could still do amnio.
so I call Peri now to schedule the sequential and u/s asap.

alexa

 

The fact that the donor was 27 puts you at much lower risk, so it's basically a 27yo and your dh, so you being 35 has little to do with the egg quality.

Good luck, just take it one step at a time!

 

QUOTE(summerfun @ Sep 7 2007, 09:33 AM) [snapback]396971[/snapback]
I declined all those tests as with both my pregnancies as it wouldn't have made a difference one way or the other. Didn't think it was worth the risk.

Same here. The only reason I would have an anmio is towards the end to see if lungs were mature.

 

I was 33 when I was pregnant with the boys. I/we declined the amnio unless the level 2 revealed some abnormality that was worth looking into in greater detail.

Rachel

 

There is a test you can have before amnio called nuchal translucency, which measures the skin folds of the back of the babies' necks. Thick skin fold is something associated with down syndrome, and maybe some other chromosomal disorders. I had this test done in my first pregnancy, probably around 12 weeks, which detected a problem with the fold. I then had to wait another 5 weeks for the amnio, which confirmed down syndrome. That 5 week wait was very unpleasant to say the least. I was 37. For my second pregnancy, I was also 37, I skipped the nuchal translucency test and just did amnio. (By the way, my daughter was born with a genetic syndrome, Prader-Willi... so much for all of the tests and she wasn't diagnosed until she was 9 months old. Even though Prader Willi is one of the ten most common genetic disorders routine tests don't test for it and it's a disorder that can also be blamed on advanced maternal age.) For this pregnancy, I skipped all of the other tests and did CVS. I was 40. (The doctor who performed my CVS test, by the way, was extremely experienced and performs many CVS tests so worry of complications was greatly reduced.)

So, you should really test for what makes sense for what you think you will ultimately do with the information you get from genetic testing. From my point of view, I see absolutely no reason to get nuchal translucency if you definitely want to know if your babies have a genetic problem. I would advise anyone 35 or older to just get amnio or CVS and feel that I'm coming from a pretty experienced place to be dispensing this sort of advice.

Good luck.

 

thank you all for your reply...

hudsonvalleygirl, I understand you suggest amnio or CVS, amnio confirmed down syndrome for you. may I ask, what did you do then?

I do the sequential screen and u/s and will ask my OB next week if okay and if it makes sense to add a nuchal translucency, and I see what she says. actually, the NT might be in the sequential scan, because she said it will be b/w and u/s, and then we and also what Peri will say in 10 days.

alexa

 

We decided to terminate the pregnancy.

 

We did the nuchal scan (ultrasound combined with bloodwork) at 11 1/2 weeks, I think you can do it to 13. That gives you your estimated "risk" for Downs, Trisomy 13, and a couple other disabilities. We'll also do the triple screen (Not sure if that's what it's called) at 16 weeks. Our first screening showed very low risk so I don't plan to do the amnio at this point. With twins, the risk of amnio hurting one of the babies obviously is higher (simply because there are two of them doubling the chances of problems). Also we were told if our 18 week anatomy scan identifies any probs we'll have the option of doing the amnio right then and there.