NT Screening

TRY NOT TO PANIC! I had the UltraScreen done and regret it and would NEVER recommend it to anyone! My results came back with a positive for Trisomy 18 (MUCH worse than Downs). A had an amnio the next week and everything is fine with the baby! I'm 16 weeks now.

Hi K.,

I'm an ultrasound tech, and my first question is: at how many weeks did they do the NT screening? A NT screening at 11 weeks is more accurate than a screening at 13 weeks. Although this test is a very good indicator of possible fetal anomalies, there's a lot of variables that factor into the screening, and there's some cases where the measurement of the neck can be overestimated somewhat easily.
If you do choose to do further testing, then I would try to have a positive outlook until you can get official results from that. Ultrasound is a good initial look, but you really don't know for sure until you have an amniocentesis or chorionic villus sampling (i think from 10 to 13 weeks). At my hospital, we do a lot of amnio's (as a result of earlier testing like bloodwork and NT screens) that end up being absolutely fine. In fact, I can only think of 2 patients out of 4 years of doing them where the results were actually bad.
So, the odds are in your favor, and I really really hope that you get good news!

Hi K.,
Try not to worry too much until you have definitive testing. At a sonogram my Ob Gyn told me they thought my daughter had abnormal kidneys possibly Polycystic Kidney disease. I was scared and very anxious for 3 weeks until I could get into a Perinatologist. (it didn't help my blood pressure issues!) Anyway the specialist didn't find anything abnormal and I did all that worrying and research for nothing. If in fact you child had special needs please know that there is support out there and they are some of the most loving and special children ever. (Aunt of a disabled child and I love her more than anything!)

Dear K.,
As a nurse I never like to see this kind of statement. Can you imagine if someone said to you that you had some type of cancer, without the all the correct tests to determineif you really had it? Sheesh...., get another opinion from a tertiary facility, like a university hospital or a major medical center like Mayo Clinic or Cleveland Clinic.
And what do they mean they "never like to see". Run as fast as you can from someone who will not spell everthing out to you and answer all your questions (if they did that you would not be asking questions on Mamasource). Good luck to you and congrats on baby #2.

K.,
Basically what the result means is that your baby is 5% below the average(normal) size at this gestational age. A first trimester ultrasound is not as accurate as the 20 week(halfway mark)ultrasound. If the baby is active and the heart rate looks good at this point than that is good. Plus, there are many factors here...they were not able to measure very well since he/she was active and your dates could be off as well. Even a week off could make a big difference at this point. I would totally not worry about anything until the 20 week ultrasound. At my 20 week ultrasound with baby #2 they did find a marker for down's(I was 38), choroid plexis cysts, which are basically fluid filled pockets in the hemispheres of the brain. Of course, I totally freaked and surfed the internet for info for hours. We had a meeting with the radiologist who told us about our options basically amnio/no amnio. Due to the risk of the amniotic sac leaking as a result of the amnio, we decided not to have one. He did not try to talk us into one or out of one. We knew that no matter what the results were we would not have done anything different so why risk it just to have knowledge. Anyways, to make a long story short, by the time we went in for a follow-up ultrasound three weeks later, the cysts had totally resolved and were gone. All the worrying for nothing. He is now a healthy, normal 3 year old. The radiologist himself told us that many babies in the past probably had cysts like his, that resolved themselves and the parents were unaware that they ever existed. Please, don't worry at this point, it is way too early. Take it week by week at this point. Hopefully next time he/she will measure in the 100 percentile for gestational age. GOOD LUCK! Sorry for the long response.

Hi K.,
I'm so sorry for your unsettling responses you receive after your ultrasound. I am not a medical professional, but I imagine they will want to do another scan. This might be helpful to get a correct reading. It sounds like the movement didn't help and may have even caused a false positive, meaning, your baby is perfectly fine and in normal range, not as large as they think.

Ultrasound is not absolute, there is up to a pound range of error. I would consider asking for another scan.

Best of luck!
Lara

Hi K.! My thoughts and prayers go out to you... I know this must be a very stressful time for you! I have not been in your situation before (I opt to not to any genetic testing done with my pregnancies), but I do have friends who have been in similar situations as the one you're in. Many, many times, these tests are incorrect. A friend's sister was told by her dr. that her baby would be so severely disabled that he recommended she terminate the pregnancy. She refused, and now has a perfectly healthy baby! This is just one of many stories like this that I've heard. Remember - dr.'s are humans, too, and they make many, many mistakes. Even though we did not do any genetic testing when I was pregnant with my daughter, and I just signed the papers yesterday to take a pass on testing with my current pregnancy, I still worry about the health of my unborn babies. What really helps me is to remember that God is the author and giver of life, and He doesn't make any mistakes. Hopefully, all will be well with your little one, but if for some reason things aren't what you're hoping for, just remember - each child that God places in your life is the child that is perfect for you. I know that if I'm given a child with special needs, it's because God knows that I am the perfect mother to love, nurture, and protect that child unconditionally. Trust me, whatever the outcome, you're going to love you child more than anything, "perfect" or not! A good friend of mine has 3 children and her middle daugther has Down's. She often tells me that if she could keep her daugther exactly the same but just change the fact that she has Down's she would not do it. She loves her just the way she is. So, after all this rambling I guess what I'm trying to say is: everything's probably fine, but if it's not, God will give you the strength and grace to be the perfect mommy to your child. Hang in there! :-)

Hi K.,
I really think that those screening tests are unnecessary and they just end up worrying moms for no reason. I had 3 level 2 ultrasounds and with each one they told me that one of the baby's kidneys was too large, which could be a soft sign for Down's. They encouraged me to have an amnio but I refused. My faith in God is very strong and I just gave it up to Him that my babies would be healthy because I didn't want to spend the whole pregnancy worrying. Turns out that all 3 babies were perfectly fine. Congratulations on your pregnancy and God Bless.

The actual results of the 1st trimester screen are a combination of the blood work and the ultrasound. Please try not to worry until you get the statistical numbers of the full test back. I personally don't think they should have told you anything until the actual results came back.

It is a very common test for women over 35. It is also the most accurate in detecting problems.

ITA with all the responses that you don't have the whole picture yet. That result needs to be combined with that for your bloodwork. I was sent to a perinatologist after being told of the incresed risk for downs for our son. They did a level 2 u/s and all looked good and he was born healthy. We were not interested in amnio because of the risk of miscarriage and cvs has an even greater risk. If things had still looked iffy at the level 2 then we probably would have considered the amnio just so we could be more fully prepared to care for him when he was born if he was going to have a problem. The odds are overwhelmingly in your favor that all is healthy with baby so try to relax. (I understand so much easier said than done). And, if a problem is revealed later on, know that there is a lot of support out there for special needs kids and parents. (This is coming from a parent of a child with developmental delays. My dd was born perfectly healthy but she has had some stuggles and was diagnosed as being developmentally delayed.)

Also - one final side note - a wiggly baby is hard to measure accurately and a wiggly baby is generally a healthy baby.

Ultimately, you need to do what will give you the greatest peace of mind. I would suggest that you and your husband be rock-solid about your mutual value systems, because that will drive any further actions that you take for testing/screening.

I had a perfectly healthy pregnancy - did the first tri screen, which came out aces. My husband and I wanted to be as certain as possible, however, so I had an amnio. It was all good there, too. Fast forward three years and my daughter was diagnosed with autism. Go figure.

What did I learn from my childbirth experience? You can test out the wazoo or do nothing - in the end, you get the baby you get. At least we had two trimesters of peace of mind, instead of anxiety - which certainly would have been the case given our temperaments.

good luck!

Hello.

I would say it's too early to tell if anything is really going on, especially since they had diffiult time getting anything because of the amount of movement from the baby. If you have a real concern, see a specialist that can give you more information and just pray about it. God will help you relieve your anxiety, but get another doctor's oppinion or give it some time and tell them to check again. Good luck and God bless!

I would have a Chorionic Villus Sampling (CVS) or an Amniocentesis done asap. This the only way you will know for sure if the baby has Downs Syndrome or other defects. I've had CVS procedures done during both of my pregnancies.

While I have not had this with any of my kids I just want to caution you about getting upset too early. So many of these tests come pack as false positives and causes alot of worry. With my second son they were worried about him having downs, so I had a level 2 ultrasound done and they said it was such a small possibility not to worry about it. We wer offered an amnio and I declined, because I was going to have him wither way so why risk it/worry? In the end he is now just over 2 and perfectly healthy. (Autism runs in my family, so we'll see what the future holds) I also don't do the triple screen because of the high false-positive rates. Good Luck with your pregnancy and try to relax a bit. As many other moms have said, it's way to early to be able to tell anything yet.

I would do some research on the net...google.com and enter phrases like "95th percentile for NT test"....After I called my ob/gyn.

I've noticed that many doctors will rush through their explanations and use terminology that laymen wouldn't understand anyway. You really have to make them slow down and explain things in a way that you can understand.

I would call your doctor and have him/her explain things to you.

Now in my very unprofessional opinion, I would try to calm myself until you can talk to your doctor and make sure that you get all the facts even after you speak to your doctor because many of those tests give false positives and cause mother's to fret and make hasty choices....always seek as much info as you can....like you are now in this forum.

If you are concerned about downns, then I would get an amnio. I had a friend recently who they thought had kidney issues - also a marker for downs and she did a rapid amnio where you get the results fast. It all turned out fine and so she could relax about the pregnancy. Even if the results had been different, then she would have been able to get used to that fact. The not knowing is very hard I think. I had CVS at 11 weeks and so I knew then that the chromosomes were normal and I found that very reassuring. While CVS can have a slightly higher risk than amnio, northwestern memorial was in the first clinical trials of CVS in the early eighties and the docs there, especially Dr Lee Shulman have done thousands and thousands and in their hands, CVS is not higher risk than amnio. The other reason to have amnio or CVS is that if your child does have Downs, then if you choose to continue, they will likely have a cardiologist available for the birth due to increased cardio issues with such births. Good luck - they often pick stuff up on the ultrasounds that turn out to be nothing. I know it is hard to not worry but if it were me, I would get additional tests done so that you know asap whether there really is anything to worry about. Good luck again.

K.:

I had something similiar w/ my second pregnancy at 35. Ask for a level two ultrasound. The other option was to have them take a sample of the amniomic (sp?) fluid - which I was not on board for. Turned out everything was fine. I found out later that a high percentage of those test that they do for us pregnant women over 30 are false positives.
Good luck

I agree with those who are encouraging you to try to not be upset with this one test and the comments given to you, although I realize that that can be much easier said than done.

If you're of the belief system that you will carry this baby to term regardless of any test results, then there is no point to exposing the baby to any more ultrasound, because there are only 1 or 2 conditions which can be addressed before birth anyway. In addition there is a school of thought that ultrasound exposure does carry its share of risks.

If you are interested in what those potential risks might be, there are several articles on this page which deal with that question....

http://home.mindspring.com/~djsnjones/id7.html

Also, if you are concerned about the bsby's size being behind schedule, you can try this diet to help him/her catch up to the size s/he is supposed to be...

http://home.mindspring.com/~djsnjones/id64.html

And here is a story about a mother who was able to help her baby to catch up with her growth, after a whole month of no apparent growth at all...

http://home.mindspring.com/~djsnjones/id22.html

And here is a good book on how early prenatal testing can affect the mother mentally and emotionally. You can probably find it in your local library, or ask them to get it for you through inter-library loan...

http://www.google.com/products/catalog?q=0670808415&c...

May you have peace,
J.

When I had the test done it also came back the same. Several of my friends too
They said my son was very big for how far along I was. They was saying he was reading 10-11 lbs when I deliver him. Course that was not the case he was 7lbs 13oz
I don't know if I totally believe the test. It seems everyone is large anymore.
I would like to know what scale they go by because it seems like everyone pregnant anymore there baby is off the normal scale.

Whenever you don't understand something the doctor is telling you, please let them know. I would call the office today and tell them you have been stressing over this since they told you, and don't even know how much you should be worried. Ask them to again explain the test results, what and when the next steps of testing and information are. The answers may or not set your mind at ease, but you will have the information so you are not wondering. If the second explanation doesn't make sense ask again...sometimes our minds will not let us comprehend something that we don't want to know or in our heart believe won't be true. So sometime hearing it over again will help us digest it.

HI K.

I had this test and my genetic doc called me and said my numbers were off, he said it may indicate downs, however he did say all this is not 100% and the test does have many false positives, aggghhh why oh why do they even bother! So after much crying and stress we had an amnio done to be sure...I did not want to spend 9 months worrying about something that may not be.... amnio showed everything was normal.... as hard as this may seem having the amnio really did set my heart at ease, if you do decide to have one done, find a doc that has performed lots, the risks are there but not that high
good luck

Just so you know, I have know two people who have had babies (who turned out to be perfectly healthy) die during an amnio...you just need to know the risk you are taking. I also do not do the testing I have literally known dozens of women suffer needlessly over false positives and the only woman I know who had a downs baby, had been told it all looked "normal."

HI K.
It could also be nothing. You could have a perfectly normal healthy baby and would have gone through your whole pregnancy worrying instead of enjoying this new life. Put it in God's hands and know that everything will be alright- whatever that is. Keep the faith.

The final results will incorporate your blood draw results. The ultrasound tech was only reporting on the nuchal fold measurement. I would try not to worry too much, the final results may still be quite good! The measurement isn't the only variable here!!! I hate it when medical personnel overstep their bounds and give people misleading pieces of info. I would call your Dr or nurse and get the final results as soon as they are ready and then you'll know where things stand. It's also important to remember with the first trimester screen that it's a SCREEN not a test. This means that it's job is to catch the cases that need further testing, not to diagnose anything. Screens will always have a higher false positive rate so as not to miss problems and give anyone a sense of false security. So, even if the results aren't what you would want them to be, it does not definitively mean there is a problem with your babe. I know it's stressful, but hang in there, and try not to panic. You'll continue to get more info and there will be plenty of time to worry if it's called for.