- Pregnancy
- Baby & Toddler
- Parents
- Getting Pregnant
- Baby Names
- Product Reviews
-
Registry
- Community
-
More
Want a personalized experience?
Download the free app
2nd Trimester
>
NT Scan results = elevated risk. Freaking out.
I just got the call that my NT scan results came back with an elevated risk for Downs. 1/215 she said, and normal is 1/10,000.
I am going in for an amnio and genetic counseling on Wednesday .
I am pretty much hysterical right now. Has anyone else been through this? I'm scared to death.
>
This discussion has been closed.
Re: NT Scan results = elevated risk. Freaking out.
I would be worried as well. Not sure if this will help, but remember the NT scan is not diagnostic and a 1/215 is still a very small chance. Chances are nothing is wrong. Try and not be negative or too upset until you need to be.
Take care, try to breath, and you will be in my thoughts and prayers.
Best of luck!
With my DD I came back 1/200 for Downs, she is perfectly fine. My best friend had similar numbers for trisomy, her DD is also fine. Try to relax
I opted out of the scans this time because of the stress it caused me last time around.
Yes, I have been through this, and I know it is hard to stay calm, but please try to! My risk for DS after my NT Scan was 1:500, but after my Quad Screen it went up to 1:25! A few days later I had a Level 2 Ultrasound (which showed no markers) and opted for the MaterniT21 test, which is a fairly new blood test that tests for DS. Do you know if this test is available to you? I did not want to do amnio if I didn't have to. My test came back negative for DS a week later.
I spent a lot of time reading about this online and there are TONS of false positives. Are you older than 35? That automatically drives your risk up. Also, as the pp stated, there is a 99.5% chance that your little one does NOT have DS, which are actually great odds. Hang in there!
This. Also, how are you just getting your NT scan results? Weren't those taken over a month ago?
I'm very sorry you are going through this. Odds are still in your favor everything is just fine.
DS #1 Born: 10/03/06, DS #2 Born: 08/06/12 My Cooking Blog
I would agree with this. And have you or are you meeting with a genetic counselor? We just had to have a meeting due to something unrelated and she walked us through our options such as amnio so that we are prepared to make the decision if/when the time comes. I think it was very helpful.
I had a 1/86 chance and was upset too. Again, like the prior posts that meant that out of 86 babies my baby would have Down's, a good chance. I did have the amnio because I needed peace of mind throughout the rest of the pregnancy. I did this with my 2.5 year old son although I had great numbers with him I was still worried because I was over 35. I could not bear spending the next 20-25 weeks stressed out of my mind.
<a href="https://www.thebump.com/?utm_source=ticker&utm_medium=HTML&utm_campaign=tickers" title="Ovulation Calculator"><img src="https://global.thebump.com/tickers/tteeedc.aspx" alt=" BabyFruit Ticker" border="0" /></a>
My risk came back as 1 in 70 after my first trimester screening at 12 weeks, and I have my amniocentesis scheduled for next Thursday at almost 17 weeks. I don't trust them 100% though because I know two people personally who had a 1 in 70 risk after their screening, went through the amnio and were told that their babies were healthy, and then they each gave birth to little boys with DS.
Stay calm, don't be hysterical over it. Take each day as it comes and realize that a baby with Down Syndrome is not the end of the world. They are just their own special blessing, a different blessing.
I'll be thinking of you and sending T&P your way for good results from your amnio.
Just try to keep in mind how super tiny those odds really are - that's less than a 1% chance! Any one of us has at least that chance of something going wrong. This happened with my aunt when we were pg together, her odds were something like 1:50, and her little girl is perfect and healthy.
Hang in there. I'm sure your amnio will bring you major reassurance.
(read it. you know you want to.)
anderson . september 2008
vivian . february 2010
mabel . august 2012
My risk was 1/150, I had a normal sono and an amnio. The amnio isnt a big deal, don't get me wrong I wouldn't do it everyday, but for the piece of mind it was totally worth it. I am one of those people that has to know, no matter what. Waiting the ten days for the results felt like a year, but it was normal in the end.
FX all is well, and good luck on Wednesday.
BFP#1 10 wk missed mc
BFP#2 DS born at 40+2 on 8/14/12 BFP#3 DD Born at 39+3 on 5/13/14
Sending you more good vibes. I too had the experience, the bloodwork from my nuchal came back with a 1 in 21 chance our baby had down syndrome. We opted for the amnio to know and to be better able to care for our baby if she were to have trisomy 21.
It turns out the amnio was normal and the baby does not have down syndrome. The waiting for the amnio was very difficult and we knew that whatever the outcome was, we would be fine, but we wanted to know.
The Materni21 is not available in our area, but if it were, I would have opted for that instead of the amnio which is invasive. Our doctor said that another ultrasound would not give a definite answer, would just show potential markers, so we decided to go for the definite answer.
Hang in there. Try to breathe, keep calm and care for yourself well.
Thank you all so much for responding. I have been reading and talking with my doula and have calmed down significantly since my first post.
To answer previous questions, I had the initial NT scan done right at 13weeks, but just had the follow up blood work done last week at 18 weeks (you wait 4 weeks as a standard right?). I didn't get any results after my initial scan but the doctor that did the ultrasound said everything looked great, commented on how the neck looked all normal etc.
I think my initial hysterics were in large part due to being told that 1/10,000 is normal. So basically she was telling me my risk was 50x greater than normal. After doing some research (and as some of you have pointed out) this stat is totally false. I don't know where the hell it came from but I am now just PISSED she told me that. Looking at a DS website, the risk for a 34 year old is actually 1/325. So why the hell did she say 10K???
They didn't explain the amnio at all except to say that "it's a much more accurate test" and went ahead and scheduled one along with my genetic counseling in 2 days. I am now seeing that the risk of miscarriage from an amnio is about 1/300 (this is from babycenter).
So WHY would they recommend an amnio when the risks for miscarriage are almost as great as my baby's risk for downs? This makes no sense to me at all.
I'm interested in that new blood test one of the PP mentioned - looking into it, thanks!
My midwife is calling the genetic screening place to get the report and then will call me to go over all of this.
Thank you SO much to everyone that responded.
It is very scary. 1/215 is still very good odds. I am 40 and my odds were 1/74. I had the amnio and am waiting for my results. Good luck with whatever you decide.
Oh and ask your Dr. what their amnio risk is. Their risk was 1 in 1600.
I'm going through the same thing right now. My 1st Tri Screening came back with 1/40 odds for Down Syndrome due to a problem with the nasal bone.
We are going to see a genetic counselor tomorrow and will most likely have the amnio done. They told me about this almost 2 weeks ago and I wont be able to get the amnio until at least next Monday.
Sine I found out, my emotions have been a roller coaster. Some days I am optimistic, other days I am a mess. But, like others have said, the odds are still in your favor and a lot of people are told they have an increased risk and everything turns out to be fine.
Hi, I recently had an amnio, so I just wanted to add a little to the conversation. I'm not for or against, as it's a decision I think each family needs to make, but I wanted to add some info.
That 1:300 number is commonly passed around as the loss rate for amnio, but it isn't accurate for most facilities. Where I went, they do about 600 a year, and lose about 1 pregnancy every 2-3 years, for a loss rate of about 1:1400. The more experienced the facility, the better the outcome will be.
I found it very helpful to meet with the genetic counselor. She had a lot more info for us and really helped calm down my husband, who was the nervous one. When it comes down to it, for us it was worthwhile because we would have wanted to know. There are some disorders for which we would have chosen termination, and others for which we simply would want to know in advance to get the best support at the earliest stage. For example, if you know to expect Down's you can give birth in a high risk facility, have immediate intervention for any heart problems, and can start Occupational Therapy at a very early age (I have a friend who just did all this, so I know it really can help the child).
In all likelihood, you and your baby are doing great and any further testing will be a precaution. Good luck, and I know everyone here will be praying for a great outcome.
Typically you get blood work done in your first tri, which is paired with the NT scan, then get bloodwork done again in the second tri, which is paired with your anatomy scan. So I got one set of odds in the first tri and a second set of odds in the second tri.
It really depends on what state and scoring system they are using. Here in Cali, my 1st Tri/NT scan results for Downs were 1:1,900 and the 2nd Tri/anatomy scan results went down to 1:38,000.
ETA: We did do the Verify (like MaterniT21, but with slightly more trustworthy results, according to our u/s doc and genetic specialist) just to rule out DS, even with our stellar blood work, because they saw ecogenic foci (calcium deposits) on the heart. It is a VERY soft marker and they really don't think there is a risk for us, but we wanted to be 100% sure. We'll know in about 2 weeks.
For all of you that also are dealing with these scary results, waiting on amnio results, etc - I will be thinking about all of you in the coming weeks!
So I just talked to my midwife, who told me the results of the initial scan (ultrasound+bloodwork) were 1/770. So it was the follow up blood work taht came back elevated for 1/215.
In her opinion, she says it's probably a false positive. That often when the first screening comes back fine, they don't even test for downs when they do the 2nd round of blood work because it gets less and less accurate as the baby matures.
She also said the nurse read me the wrong stat when she said 1/10K. She said "oh she was looking down the column instead of across". That is so not okay. I will be saying something to the doctor about this.
I'm still going in for the genetic counseling on Wednesday and to talk to them about what these numbers mean and why my risk went up so drastically between 13 and 18 weeks, but as of now I'm feeling much more calm and probably will decline the amnio.
BFP#1 10 wk missed mc
BFP#2 DS born at 40+2 on 8/14/12 BFP#3 DD Born at 39+3 on 5/13/14
Don't worry! 1/215 is still a very small chance of occurrence. Your chances are very, VERY good that you have nothing to worry about. After all, your results mean that out of 215 women who get the same result as you, only 1 of them will (statistically) give birth to a child with Downs syndrome. I've heard real women with 1/12 (or "worse") odds that give birth to perfectly healthy children. You are in a good place! Take care of yourself, and try not to worry.
I think you may have misheard/misread the 1/10,000 being normal. At 23 years old, my "average" risk is 1/1564 or something like that (my actual risk I don't know, haven't gotten back my quad scan results yet). Even younger mothers may get into the 1/1600's range, but nobody has odds anywhere near 1/10,000 as far as I know.
I have heard many times those tests aren't always accurate. Even if it is those are still not too bad odd's! I can understand being scared though. I would freak out too!
However ... if your child did have downs syndrome its not the end of the world. My sister is mentally retarded and she is leading a very nice happy life. Mentally she is maybe around age 8 .. but she is happy.
I think I would be too scared to do an amnio. I guess I would look at it like even if something were wrong with my child I would still have the baby. So I would not want to put myself through the test. Just my opinion though! I can understand the not knowing would drive me crazy too though!
I wish you the best and hope all things come back just fine for you.
This is really great information to have. It definitely re frames the whole idea of the amnio for me. I imagine if we were in a situation where our doctor was recommending it we would look into it more closely, but it's definitely reassuring to know that the test has become significantly more safe in the past 10 years.
ditto this!
I was in this situation a couple of weeks ago, except my Down Syndrome odds came back as 1 in 170 (they had been 1 in 590 after the first NT blood work and US). I was freaked out and seriously considering getting an amnio (despite not previously having any interest in one?my husband and I have always been very clear that unless we found out that the baby or I were in some serious danger, we weren't going to get our heads turned by any of these tests)!
My OB's advice was for us to think about what, if anything, would change if we found out for sure that the baby had Down Syndrome. For us, that answer was nothing. We weren't going to terminate, and the baby would still need the same love, attention, resources, etc., we would give a non-Down Syndrome baby. That helped me relax. She also said that if we opted against getting an amnio, an echocardiogram could be done during my 24-week ultrasound (apparently, there are some Down-related heart issues that can be detected by an echocardiogram).
But what really brought me all the way back down to earth came during my second meeting with the genetic counselor the next day (my state gives you a second genetic counseling meeting and US for free if your numbers come back positive). She said: The way odds are phrased can sound so huge/overwhelming/frightening. So convert the odds to a percentage, and that is usually a more "digestible" number.
So, instead of a 1 in 215 chance, think of it as a less than 1% chance that your baby has Down Syndrome.
I hope that helps ease some of your fear.
I got a NT with both pregnancies with the assumption that I'd get an amnio if our numbers came back raising questions. I was fine with DS. With this one my risk was 1:270 but I wanted to wait to have an amnio until after I took the AFP test.
I did and my numbers came back 1:2,500.
So try not to worry and, IMO, get the AFP done. It's still non-invasive and can go a long way towards allaying your fears.
My Blog
With DS, my results showed high AFP and a 1:160 chance of an NTD. An NTD can range from mild to severe or fatal. Down Syndome also has a large spectrum of impact, but being fatal is not part of that spectrum. That may not be comforting, but these are precicsely the kids of things that a genectic counselor can talk you through. I would advise that to be your next step before making any other decisions. It was very helpful for us. From her we learned that in our case, a level-2 u/s would give us 93% accuracy and an amnio would give 97%--so quite close.
But, I am getting ahead of myself...after talking with the genetic counselor a few days after we got our results she was open to sending us across the hall for an amnio the day we met, but we decided to wait until after our level-2 US. Our thought was that there is no risk with an u/s but amnio has a risk of loss, as PPs have mentioned. You should find out the risk with the doctor/clinc that you are considering using. We were told that nationally it is 1:200 and that was less than two years ago. The dr who would do ours is 1:400. It would'be been done under the "eye" of a level-two ultrasound. I wavered back and forth on what to do, but DH just could not accept that level of risk. So, I yielded to his opinion knowing that we could always change our minds.
Because we declined the amnio, my insurance (stupidly) would not allow us the level-2 u/s that day for another look, we had to wait for the anatomy scan. After we had the level 2 u/s (three weeks later, the longest wait of my life) our risk factor went to 1:1600 because LO looked great, save for a bright spot on his heart that actually is very common.
LO was born perfectly healthy.
The question the genetic counselor asked us to think about is what we'd do with the information and if that could make the risk worth it. That was a nice way of asking if we'd terminate. Not in any way does amnio or testing imply any position in either direction on that (it infuriates me when people imply it does), but if we would, definitive genetic proof could accelerate a decision. Because we would not we asked ourselves: is it worth risking the life of a healthy baby or hours, weeks, or months with a baby that can't make it? (Again, just telling you our thought process. Every couple will think things through and feel things out differently and have different ways of weighing the various risk factors.)
We decided to pick the path of least phsycial risk in hopes of at least having every moment we possibly could with our child should the news be the worst, and that we were looking at something fatal. But, that was probably the harder path emotionally as we had to live with uncertainly for longer.
I know that any sort of elevated risk is scary, but 1 in 200+ is really quite small. It is about what the standard risk factor is for a 37 year old mom and loads of women have healthy kids at 37.
I wish you peace as you gather more information! Hopefully some of this was helpful.
More Green For Less Green
Like other posters said...you still have a 1 out of 214 chance that your baby does NOT have downs.
That's only a 0.47% chance that it does.
~after 34 cycles we finally got our 2nd little bundle of joy~
My IF blog
Since you got so many great responses here, I just wanted to take a moment for a small bit of education.
The correct term for Trisomy 21 is Down Syndrome, not Down's Syndrome. And it is more acceptable to refer to a baby with Down Syndrome as opposed to a Down Syndrome baby. Put the person before the condition, for any disease, disorder or other classification. Children with Down Syndrome are just that, children. The condition doesn't define them.
(Stepping off soap box now.)
Make a pregnancy ticker
Duly noted and sorry if I said anything offensive!
Hey thanks again everyone that responded. These responses and doing some of my own research have really calmed me down.
More than anything, I'm just PISSED that the woman that called with my test results told me that "normal" was 1/10,000. That is what made me completely panic, because she's basically telling me my risk is 50x greater than what is normal. And that stat was 100% FALSE. I still just can't believe someone whose job it is to give out test results wouldn't at the very least have be able to give that piece of information accurately. I am sure "what is normal?" is a very common question. I am livid over it.
We meet with the genetic counselor tomorrow, but everything about this result points to it being a false positive which has really calmed my nerves. I do want to hear from the geneticist though why my odds increased from 770 to 215 after my 18 week bloodwork. I know when we did the 13 week u/s that the tech told me the baby looked perfect, commented on the neck and nasal bone and all that stuff they look for. So something came back wonky at 18 weeks with my hormones.
If there is cause for concern, we'll opt for the MaterniT21 test over the amnio since the results are just as accurate with no risk. I'm sure it's more expensive (up to $500 depending on my insurance from what I understand) but it will be worth it. I really think I'll only get this done if I am stressed and worried about it and just needed to know one way or another so we could prepare.
Thanks again everyone and I will be praying that we all have healthy babies in a few more months!