Got the NT scan test results, slightly freaked. - Mothering Forums
May 2011 > Got the NT scan test results, slightly freaked.
jenofur's Avatar jenofur 04:51 PM 11-04-2010
I had the 1st trimester downs screening last week and they just called with the results and I'm freaking out a bit.

The test for Trisomy 13/18 can back great. My age risk is 1/500 and it came back as 1/10,000 which is wonderful.

However the downs risk for my age is 1/300 and came back 1/193. The fluid that they measure on the ultrasound was 2.8 which is not abnormal but is close to where they would have sent me immediately to the hospital for more checking..that measurement is 3.0.

I have to go for genetic counseling now and getting an amniocentesis has been mentioned.

Has anyone here gone through this? Had an amnio? I know that this doesn't mean that my baby will definitely have downs syndrome but I really didn't need something like this to happen during this pregnancy with having a miscarriage just this past July.

beckyand3littlemonsters's Avatar beckyand3littlemonsters 05:27 PM 11-04-2010
sorry can't help but didn't want to read and not reply
Evergreen's Avatar Evergreen 05:31 PM 11-04-2010
Good luck to you. I have never had an amnio but my best friend did for the same reason as you might be. She was surprised how easy it ended up being- she is afraid of needles on top of everything else. Hopefully, you will get good news from further testing should you opt for it.
clutterbug's Avatar clutterbug 06:04 PM 11-04-2010
1/193 is still a 99.5% chance that the baby does not have Down Syndrome. I know that doesn't erase the worry, but it puts it in perspective. Also, I think (at least around here) 1/200 is the point at which they start recommending amnio, so you juuuuust squeaked in if you go by that.

I have a friend whose maternal serum screen (the one in second trimester) came back much higher than what was expected for her age, and she did the amnio. She was glad she did (baby was 100% A-OK, but she wanted to be ready if there was a chance of heart problems etc from DS).

Good luck, and I hope you get it all resolved soon so you're not stressing too much
D_McG's Avatar D_McG 06:05 PM 11-04-2010
With my DD had an enlarged nuchal fold (2.6? 2.7?) but 'good' bloodwork. the nuchal fold can also be a marker for heart problems so we had a number of follow up u/s for that and weekly NST's from 32 weeks. It was all very stressful but ultimately she was perfectly healthy.

1/193 is higher than your age related risk but still pretty low (about half a percent). So, that's good news. Try to stay calm. I know it's hard!
jenofur's Avatar jenofur 06:09 PM 11-04-2010
Quote:
Originally Posted by bluepetals View Post
1/193 is still a 99.5% chance that the baby does not have Down Syndrome.
WOW. I wish they would have told me that % when they called me.

Its so hard not to worry but i'm doing my best. I just got my appointment for the genetic counseling for next thursday and I'm pretty sure I'll get the amnio. I'm someone who would benefit from being prepared if the results still come back as not so good.
KarenMT's Avatar KarenMT 06:59 PM 11-04-2010
I haven't had the NT with this result but had the triple screen with my last pregnancy and it was positive for Down's. I was planning a home birth and if the baby had Down's I would have gone for a hospital birth. I had the amnio- was super scared but it was super duper quick and the results came back fine.

Still, your risk seems pretty low to me 1/193 is nearly 1/200 which is only a 0.5% chance of Downs. If you do have an amnio my advise is to be referred to a specialty fetal medicine department where they tend to have excellent Drs and research shows that your risk for complications is minimal. I had my amnio at a Stanford clinic and the CVS at a Harvard affiliate.
dayiscoming2006's Avatar dayiscoming2006 07:36 PM 11-04-2010
You appear to be really low risk. I personally would never get an amnio because I don't want to risk anything in any way but it's of course your decision to make.

Quote:
What are the risks and side effects to the mother or baby?
Although amniocentesis is considered to be a safe procedure, it is recognized as an invasive diagnostic test that does pose potential risks. According to the Mayo Clinic, it is performed approximately 200,000 times a year.

Miscarriage is the primary risk related to amniocentesis. The risk of miscarriage ranges from 1 in 400 to 1 in 200. In facilities where amniocentesis is performed regularly, the rates are closer to 1 in 400. Miscarriages can occur because of infection in the uterus, the water breaks or labor is induced prematurely.

Although extremely rare, it is possible for the needle to come in contact with the baby. Great precautions are taken by using a sonogram to guide the needle away from the baby.

The mother may experience a sharp pain when the needle enters the skin and again when it enters the uterus. Following completion of the procedure, the mother may experience other side effects that include:

Cramping
Leakage of fluid
Minor irritation around the puncture site
Contact your healthcare provider if these complications continue or get worse.
http://www.americanpregnancy.org/pre...ocentesis.html
sharita's Avatar sharita 08:11 PM 11-04-2010
I have totally been there not once but twice!!!!

Wayyyy after the fact I was filled in that those tests are so sensitive that false positives happen ALL the time. My percent was 1/ 118! that was so scary being I was only 19 at the time and my first baby. She immediately asked if I wanted to consider abortion and stuff before even having the amnio!!! I was outraged after the fact when we found out amnio was perfect and she admitted she sees false positives all the time due to the over sensitivity of these tests. Why couldnt she have told me that to ease my anxiety while I waited 2 weeks for my amnio results and cried my eyes out????

I didnt worry at all when it happened with my 3rd and amnio was fine and they said a false positive doesnt mean you are at any extra risk now or in the future for any birth defects its just a fluke thing that happens.

Google false positives on those triple and quad screen and like tests, will make u feel much better.

Been through this twice, I wouldnt worry, and the amnio is scary but isnt as painful as it looks just scary that they are sticking a huge needle in there with your little peanut. Never had any probs after.
seafox's Avatar seafox 09:35 PM 11-04-2010
I have no idea why they call them 'false positives' - this test should NOT ever be referred to as 'positive' or 'negative' - it only gives back a % - or a 1 in xxx number. Discussing termination is ridiculous unless it came back with a 1 in 1 chance which is probably impossible given the test (I'd imagine the highest would be 1 in 2, which is high, but still worth an amnio!)

given the amnio risk, they suggest that when your risk is less than miscarriage with an amnio (the 1 in 200 #) which is still a low percentage (for both m/c OR downs - .5%) so you have to decide if its worth the risk of m/c to know, I guess.

is it too late for a CVS test? I'm not sure if the risk is lower for m/c from that, but it might be w/ an experienced doctor I think. Plus you can do it earlier, rather than wait for an amnio. I think you can do CVS between 11 and 13 weeks?
Vancouver Mommy's Avatar Vancouver Mommy 09:39 PM 11-04-2010
Quote:
Originally Posted by bluepetals View Post
1/193 is still a 99.5% chance that the baby does not have Down Syndrome. I know that doesn't erase the worry, but it puts it in perspective.
Yeah, the statistician in me always turns these numbers around. I find it much more reassuring that way.
samstress's Avatar samstress 09:46 PM 11-04-2010
Quote:
Originally Posted by jenofur View Post
WOW. I wish they would have told me that % when they called me.

Its so hard not to worry but i'm doing my best. I just got my appointment for the genetic counseling for next thursday and I'm pretty sure I'll get the amnio. I'm someone who would benefit from being prepared if the results still come back as not so good.
i had an amnio with my daughter. it was so nice finding out and not having to worry throughout my entire pregnancy, so i recommend it (but i realize it's a personal choice). the procedure itself is pretty quick and easy (and painless).

not sure if i'll be getting one this time around. my risk for ds went from 1/75 (i'm 38) to 1/360 (so i felt pretty good about that). we'll see what the 2nd trimester results brings.

so sorry you have to go through this. try not to worry too much. chances are there's absolutely nothing to worry about.
frugalmum's Avatar frugalmum 11:19 PM 11-04-2010
Quote:
Originally Posted by jenofur View Post
However the downs risk for my age is 1/300 and came back 1/193. The fluid that they measure on the ultrasound was 2.8 which is not abnormal but is close to where they would have sent me immediately to the hospital for more checking..that measurement is 3.0.

I have to go for genetic counseling now and getting an amniocentesis has been mentioned.

Has anyone here gone through this? Had an amnio? I know that this doesn't mean that my baby will definitely have downs syndrome but I really didn't need something like this to happen during this pregnancy with having a miscarriage just this past July.
I've posted my story elsewhere here, my DD's measurement was 6mm and even without the blood tests I was counseled to terminate. The chances they gave me were 1.5:2. I had a CVS done which came back normal and DD is 2 yrs old today, happy, smart, a joy.

Don't panic and if you feel you must know what is going on have the amnio, but you have to make the decision you are comfortable with, and make sure you are with a practitioner you feel very safe with if you do have it done.
clutterbug's Avatar clutterbug 10:59 AM 11-05-2010
I find it really shocking how people are counselled to terminate based on nothing but a % risk. I am not against terminating, but it just seems bizarre to me to have them advise you based solely on chance and not hard data. As per PP, 1.5/2 is a 75% chance that the baby is affected, but still a 25% chance that all is fine. If the lotto gave a 25% chance of winning, wouldn't we all be buying a ton of tickets? If a certain cancer only had a 25% survival rate, would doctors be advising patients with that cancer not to bother treating it? I just don't get it.

Anyway, getting OT. Just had to comment :P
Partaria's Avatar Partaria 12:32 PM 11-05-2010


I haven't been through this personally, but I can relate a little bit. Maybe some of the info I have might be helpful.

I chose to do homebirthing, but had to see an NP at my HMO anyway (if you don't go to the NP appointment, they won't cover you if you have to transfer to the hospital).

She explained how low risk I was, age-wise, for Downs, then oddly pushed very very hard for me to get screening.

I told her I didn't see why, and asked what the risks were for testing.

She told me that tests up to the amnio phase actually have really high false positives. So the biggest risk is basically scaring the socks off yourself, and getting on a train of ever more invasive tests to disprove the 1% "maybe" you got with earlier testing.

Don't know if that helps you, but it was the reason I elected not to get any testing done.

Bottom line though, this is completely your choice, and there is no right or wrong answer. You do what feels right for you and your pregnancy, mama.
roslyn's Avatar roslyn 03:03 PM 11-05-2010
I'm kind of freaked about my numbers as well. I'm 46 years old, and my risk for DS went from 1 in 16 to 1 in 217. (Wish I knew how to calculate the percentage, but I'm no math wiz). Unfortunately, that's still within the risk range, I needed to be at 1 in 310. I'll probably still have the amnio because at my age and financial situation I think it would be irresponsible not to, but frankly I'm terrified about the risk of a miscarriage. I am seeing a perinatologist, and she's really good. I like her a lot. I was supposed to see the genetic counselor this week, but I have a nasty cold so we re-schedule to next week.
Mosaic's Avatar Mosaic 03:21 PM 11-05-2010
DDCC... we were given a 1/80 chance, and the nuchal fold was 2.96, I think. We were offered the CVS and declined; but we did go ahead with the amnio, after a lot of soul-searching.

The amnio showed that DD does not have a trisomy but does have another chromosomal abnormality. Follow-up ultrasounds for heart defects came out clean, and DD is now almost 7 months old and absolutely adorable. She has had some minor health issues, so I admit that the genetic abnormality is always in the back of my mind as a potential cause of some of her issues. That "too much information" bit is pretty much the only downside I can see from our experience, though YMMV.
littleteapot's Avatar littleteapot 04:31 PM 11-05-2010
The hard truth is that no amount of testing will prevent or treat a problem if there is one, it'll just tell you a bit earlier. Is it necessary to know right now, especially when the risk is so low and there's such high rates of false positives?... if it were me, I'd forego further testing and just try to spend the rest of the pregnancy relaxing, focused and thinking about the beautiful baby inside. Like others have said YMMV, and if you feel that knowing is best for you, then by all means do it... but don't do it because you feel pressured: do what you feel will be best for your peace.

On a personal note: my 2nd child died of a fatal birth defect. I refuse all prenatal testing in subsequent pregnancies because I don't want to needlessly stress myself out. I'm sure something will come back positive for something, or a higher risk for this and that... and to be honest I don't care to know about it. I'd rather just enjoy my time in pregnancy.
roslyn's Avatar roslyn 04:53 PM 11-05-2010
@littleteapot, if I were twenty years younger and not in the financial situation I'm in now, I would agree with you. I didn't have any testing done with my previous pregnancy in 2004. Unfortunately, I'm currently unemployed and 46 years old. Realistically I can only expect to live another 30-40 years. I think it would be irresponsible of me to have a special needs child under these circumstances.
jenofur's Avatar jenofur 07:06 PM 11-05-2010
Thanks for all your stories and experiences.

I'm feeling a lot better about it all today. I think just the initial shock of how low the numbers got since they first told me how great the other numbers were threw me off balance.

I'm still not sure about getting an amnio. I'll see what they have to say when i go to see the genetic counselor next Thursday. I've talked to a lot of people who were in the same situation and skipped the amnio for a more in depth ultrasound and other blood tests so hopefully I can just go with that.
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