Postive triple screen/amnio questions

[Emmas Mom]

I'm a little bit concerned this morning because my doctor told me my triple screen came back postive & they're sending me for an ultrasound early next week. She said in many cases the triple screen will produce a "false positive" result so at this point I shouldn't worry but that's easier said than done. :( Has anyone experienced this? I know from that I may be offered to have an amnio done. Do they hurt? What exactly will that tell that a blood test can't? I can't imagine wanting them to stick some huge needle in my stomach but I'm torn because I want to know if something is going on. I'm feeling really anxious & a little scared right now since this is new to me. I guess I'm looking to see if anyone else has been through this too. I feel a bit lost too cause I just don't know what to think. :(

[starrynight]

I haven't had one come back but I have a few positive stories to share if it helps you feel better.

The amnio can tell you about all the chromosones (I know I spelled that wrong sorry!) but the triple screen only measures the AFP levels which could mean nothing or could mean something is wrong, it's just a screen though. The amnio will tell you more and the u/s will show somethings too like spinabifida or the absence of it. (the afp checks for spina bifida, downs and something else but I forget now what)Someone that actually had one might be able to better explain it but this is the quick version my doc told me during my pregnancies.

A family friend had a positive triple screen, then she had an amnio that came back "a little off" as her doc put it. Baby was born a few weeks ago just perfect in every way :).

And years ago dh's cousin had a triple screen come back positive, they did an u/s and another test and all came back fine. And he was born healthy also.

Sending you the best of luck and hoping the u/s has good news! Thinking of you {{hugs}}

[Sarah1]

I have not gone through this myself--but my sister recently had a false positive on her triple screen (she is due in early Nov). She had an ultrasound which looked great, but she decided to go ahead and do an amnio as well (she is 36) since she just really wanted the peace of mind. Everything came up completely normal on the amnio, so she was really relieved. The odds are on your side that everything will be fine, b/c in most cases the false positives turn out to be perfectly normal, healthy babies.

I can't tell you anything about the amnio in terms of the pain, but my sister said it wasn't that bad, and she just experienced a little cramping afterward for a couple of days.

I know this is probably causing you a lot of anxiety--hang in there!

[kensjen]

It is very common to receive a "false positive" on the triple screen test. (that is one reason I declined to have it this time. ) I haven't experienced this personally, but I can count at least 5 friends off of the top of my head who received a positive on the first test but then no other problems were found at the u/s. Try not to worry, but I DO understand that is easier said than done.

An amnio can detect many chromosonal and genetic defects. I'm sure someone here will have some great links for you, I don't know any off of the top of my head. There are some risks involved with an amnio which are important to consider. Again, I hope someone has some links for you, so you can read up on all of this. That knowledge will help you make any decisions that are necessary.

My guess is you will have the ultrasound and they will not find anything abnormal. I'm glad they are getting you in early next week, so you don't have to wait too long.

[c2lane]

When I was pregnant with my first DD, I forgo the triple screen because I have had too many friends end up with false positives and all had healthy children to date!

I chose to go straight the amnio as I am considered AMA (advanced maternal age), was 35 when I had DD and just turned 37 in June. I also had an amnio with this pregnancy.

As much as I didn't want to have a needle stuck in my stomach, my need to know that everything was okay with my babies was greater. My Mom has a cousin who's son who has a severe form of DS, so I was concerned it could be hereditary.

This was my experience with both amnios; we met with a genetics counselor who went over family history with both DH and I prior to having the procedure. She went over the odds of having a child with genetic disorders and showed us what the chromosome could look like if their was a problem. She even showed us normal a pair of chromosomes - 46 I believe. I found this to be informative and helped to ease some of my previous fears, especially my concern of heredity with down syndrome.

From there we met with the u/s tech who performed a level II u/s. He took tons of measurements and look for any soft markers. Once that was completed the perinatologist came in to perform the amnio. They use the u/s the entire time they perform the procedure to make sure they don't get close to the baby. The needle they use to perform the procedure is super tiny - I didn't look at it but DH told me it was. Once the perinatologist determines the appropriate spot to insert the needle, he'll clean the area and insert it. To me it felt like a quick pinch and you can feel the needle going through the layers of your uterus. For the most part I found the procedure to be uncomfortable but both times the perinatologist gets in and out. I believe they take enough amniotic fluid to fill maybe 3 vials.

This last one I had the baby got curious and started coming close to the needle but the perinatologist was quick and got it out of there.

Personally the worse part of the amnio is the 10-14 day wait.

Good luck and try not to stress to much - I'm sure everything is fine. If you have any other questions, please let me know!


~Carrie
mom to Dillan Rose 01/02/04
& our 2nd blessing due 10/6/05

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http://lilypie.com/days/051006/2/5/1/-8/.png[/img][/url]

[squimp]

I didn't have a positive, but I did have an amnio. I was 37, and although all signs pointed to everything being fine, I wanted to have the amnio, because I wanted to have as much information as possible. But I would wait until you have all the information back from the ultrsound - it's possible you may not want to do it.

The amnio hurts a little, but DH was there to hold my hand, and the doc who did it was the head of perinatology and teaches all the docs in the state. It feels like a really strong cramp. The doc was INCREDIBLY reassuring. He said the miscarriage risk data is based on old data, and convinced me not to worry (too much).

And the genetic counselor was really really smart and helpful. Ask them all the dumb questions you can! They are supposed to help you understand all of this risk stuff.

So <<<hugs>>> and I hope everything goes OK.

[pb&j]

The triple screen is only a screening test, meaning it can't diagnose anything. If the any levels measured in the triple screen are outside the "normal" range, then you'll get a positive. Did your doc tell you what it was positive for? Usually, you'll get a number, like 1 in 150, for a specific condition (Down Syndrome, spina bifida, or Trisomy 18). What that means is that if there are 150 women who have levels the same as yours, only one of them will have a baby with DS, spina bifida, or whatever they were looking for. So those are pretty good odds that your baby is normal. It's just a number right now, and it really doesn't tell you very much.

The ultrasound can look for markers for various conditions, but again, can't definitively diagnose or rule out anything (with the possible exception of spina bifida). Some babies will have markers for a chromosmal problem, but be chromosomally normal. Other babies might look fine on the u/s, but actually have a chromosomal problem. An amniocentesis can actually diagnose or rule out any chromosomal defects (DS, T18, Turner's Syndrome, etc.) and spina bifida. There is a small risk of miscarriage associated with the amnio, but in the hands of a qualified and experienced doc, that risk is very, very small.

Yes, you may experience some pain with an amnio. Some docs will give you a numbing shot before doing the amnio. When I had mine, I did not get the numbing shot - those things sting like crazy, and only work to dull the pain in the skin, not the pain of all the various layers beneath. Really, I had very little pain - I have a super-smooth doc who was in and out in under a minute. It didn't hurt any worse during or after than getting a tetanus shot. The doc uses u/s to find a good place to insert the needle to keep it away from the baby. I had almost no cramping afterward, and no bleeding or anything. And BTW, I did NOT look at the needle - never saw it, have no idea how big it was.

You certainly don't HAVE to have an amnio, but you need to weigh the risks of the amnio with your need to know definitively if there's something wrong with your baby. Hopefully, you can get some more information at the u/s and schedule a time to talk to your doc and/or a genetic counselor about other issues that might influence your decision.


HTH, and I hope everything is well with your little one.


-Paige,
mom to Emma, s/b 11/04/04
and Max, edd 01/15/06 - it's a BOY!

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[Emmas Mom]

Thanks everyone. I'm just anxious right now. I have my US set up for next Monday & I'm not sure if they do the amnio then also. Guess I'll just have to wait. I appreciate all the info & am keeping my fingers crossed it was truly a false positive!

[amp]

We refused the AFP both pregnancies, due to it's high false positive rate! I'm way too neurotic to deal with that!

However, with this pregnancy, I'm considered AMA, so they like you to do the test, which I didn't, or get an amnio, or a level 2 u/s. We refused an amnio and agreed to the level 2 u/s. Along with this, we also had genetic counseling, so I learned some things I did not know beforehand, although I cannot give you exact numbers on any of this.

What we found out was that it's true, the AFP (triple screen, quad screen) does have a high false positive rate. An Amnio, can determine a huge number of genetic and chromosomal abnormalities without question - it's in the genes, and they get an answer about many of the problems that can occur, including Down's Syndrome, among other more fatal things, and the test is a sure thing. There are other things it may not catch (I think).

A level 2 us cannot catch lots of things like Downs. They catch roughly a 1/3 of Downs w/ a level 2 us. They have markers they look for, but sometimes there isn't enough to see. But the US can catch some of the terrible, fatal things, and a few not so "nasty" (as she called them) things.

So, doing all 3 tests gives you a pretty darned good idea of the health of that baby. Doing one or 2 may give you a pretty good idea, but things can still go wrong. The amnio seems like the biggest catch for problems.

When our level 2 turned out fabulous, we still refused the amnio. Had there been an indication of a problem, we may have gone ahead and agreed to one. I cannot speak to an amnio since I've not had one.

Again, I have no numbers to back any of this up, but it's simply my memory of the counseling session we had w/ the genetic counselor last month.

Good luck! And hugs to you! I know it would be scary to get a positive result, even if you know it's likely it was a false positive!

[KrisM]

As other PPs have said, the Triple Test is just a screening test. It gives you new statistics for various things. If you want some math, here is an example with numbers from my pregnancy.

The Triple Test (TT) correctly catches 60% of Downs Syndrome cases. About 5% of TT screens will turn up positive for increased risk of Downs. Of those, 10% will actually have Downs. So far, this is all statistics based on the test.

Now, I was 33 when I was pregnant. Based on my age, I had a 1 in 625 chance (0.16%) of having a baby with Downs. If 6250 women were tested, you'd find the following, based on the above statistics:

Test 6250 women...................TT says inc. risk..........TT says no inc. risk
Have Downs (10 total).......................6 (60%)..................4
Don't have Downs (6240 total).........306 (5%)................5934

So, the risk levels change to:
False positive = 306/312 = 98.08% (306 of 312 women testing pos. for Downs don't have it)
Fasle negative = 4/5934 = .07%
Correct positive = 6/312 = 1.92%
Correct negative = 5934/5938 = 99.93%

So, my risk for Downs went from 0.16% to 1.92%, if I came back with a positive. Yes that's a big increase, but the number is still quite small. Based on that, I decided not to take the Triple Test. I figured that the risk is still so small, I wouldn't do an amnio.

You can do similar statistics with the other 2 things the TT tests for as well.

So, if you're a numbers person, I would find out what part came back positive and do some number crunching. In any case, the false positive rate is quite high for most people.

[Karenn]

I had a false positive on my triple screen test. And since then, I've met a ton of people who also had false positives. At least a dozen in real life, many more if you count people here on the boards. It's really, really common.

I know how hard it is not to worry. I had an amnio done. I got preliminary results back which said everything was fine, but I still worried until I got the final results back!

I found that the amnio did hurt. Nothing like the pain of labor, but it still hurt a fair amount. For me though, the pain was worth the peace of mind it brought me.

Hang in there!

[mapg]

My triple screen came back positive on my last preg. I did the amnio which showed everything was fine. (In my case, the numbers showed a high risk for DS.) My husband is an economist, so he pressed for information on how these numbers are figured. He wasn't impressed with the methodology, and thought if we ran a second blood screen chances were good the numbers would be different. (The subject still makes him mad after over three years, due to all the stress I went through.) I have met so many people who had false positives, I can't tell you the number. Some did the second blood test and got totally different results, some did an amnio, and some didn't do any further tests. All the babies were fine. I am sure that the ultrasound will be fine.
As to the amnio,, yes it hurt. But the wait was the worst part. Just like the wait has been hard for you this weekend. Take care. I'm sorry I didn't see this post earlier, because I know exactly how you feel.
MA

[JulieL]

(((HUGS)))

I don't have any advice to give, but do know false positives as the others pointed out are very common. DH and I decided not to have this screening for that very reason. I hear amio's aren't as aweful as one would think and are doable. I certainly hope you get better news soon. Let us know how things go.

[KBecks]

I don't put a huge amount of faith in the triple screen, as I know people who have had false positives and I know someone who has "passed", but whose child was born with Down syndrome. The tests aren't perfect by any means, but apparently the screens help enough to identify some issues. I skipped the triple screen with Alek.

Talk to your doc at the ultrasound about the amnio. I had a late amnio done - not an early one. The early ones have some risk of miscarriage or infection, although I don't know how slight the risk is. My amnio was done with an ultrasound so they could see where the baby was and avoid it with the needle.

The needle does not hurt much - the pain is like a regular shot. My doc explained that it's the width of the needle not the length that hurts, and the needle is really thin.

Basically just ask you doc all of your questions and talk about your concerns.

Good luck,

[McQ]

No experience, but hugs and reassuring thoughts your way.

Allison
~ mama to Declan and Meghan

[SC2]

hi kristine,
i had a positive triple screen with my first pregnancy and i know what you must be going through. my triple screen showed that there was a very high chance that the baby had DS and i did decide to go for the amnio because not knowing would just have stressed me out the rest of my pregnancy. for me, the amnio did hurt, and i experienced lots of cramping afterwards, but i hear that this is different for everyone. it must have been the worst 10 days of my life while i waited for the results to come back. however the results did come back fine and i did have a healthy baby. after that, i said i wouldn't have the test done again, but i did with my 2nd pregnancy and the results came back fine. i still don't know why there are so many false positives with this test. i am sending good vibes that everything will turn out just fine!! if you do decide to go for the amnio make sure you find a good/experienced doctor and take it easy for the next couple of days!!!

edited to add, yes, and don't look at the needle! i didn't and i think that helped me a LOT!!!

[spunkybaby]

I had a false positive with the triple screen test also. It caused me so much stress that I am going to forego it if/when I get pregnant again. We went back for another level II ultrasound, which was fine, and were agonizing over whether or not to do the amnio. The perinatologist said that with the normal second ultrasound, he could revise my risk of Down's was 1 in 300 (as opposed to 1 in 150 according to the triple screen test), which is the same chance of miscarriage for an amnio. After he found out that we wouldn't abort even if the baby had DS (I just wanted to be prepared), he advised against the amnio, saying, why should we cause any additional risk to the baby for no reason. DD was born healthy, but again, I really wish I'd never taken the triple screen. Oh, if you do decide to get an amnio, check to make sure the doctor has a lot of experience and ask for his/her personal rate of miscarriage from doing the procedure.

HTH and hugs to you!

Not-so-new mom to a spunky toddler
March 2004

[PurpleDog]

I've had two amnios, a million ultrasounds, and two healthy kids. Here's my advice: Leave the amnio, complain to your husband a lot about the cramping, put your feet up for the rest of the day (if you do a lot you'll cramp), watch a lot of t.v., and eat a lot of ice cream. The needle isn't that bad; the cramps aren't that bad; and the aftermath isn't that bad. Milk it for all it's worth, of course.

Vicki