Bad News Nuchal Test ?!?! Help!

[riogirl71]

I went for my combined Nuchal test and blood panel today.
I am 37 and started out with 1:171 chance for Downs due to age.
The babie's nuchal fold measured a healthy 1.4 mm which is a normal result (anything under 2.8mm is considered normal so we were on the great side of the scale there)
Now my first trimester blood screening was not good Hcg was 1.21 (60th percentile) and Papp-a was 0.38 which is 10 percentile. So here were the results:

DOWN SYNDROME
BEFORE 1:171 AFTER:1:193 RESULTS:INCREASED RISK

TRISOMY 18/13
BEFORE 1:150 AFTER 1:6,081 RESULTS: WITHIN RANGE

I am completely devasted and can't stop crying. Everything measured great with the baby, head, limbs, heart, stomach, brains and also the Doctor doing the u/s said that everythig looked great. So I go into the room expecting god news and BAM! I get hit with my crappy blood results and an "INCREASED RISK" to go with it.

Anyone had this happen and then go on to have a healthy baby? I really need reasurance! Thanks!

[LauraLou]

The nuchal test is notoriously inacurrate. There are a huge number of false positives. It is really just a screening tool to see which women should consider an amino. Please don't stress yourself.

Secondly, I am a little confused about your results. Going from a risk of 1:150 to a risk of 1:6,081 is a huge improvement! Do you see what I mean? Before it was 149 normal babies to 1 with Downs and now its 6080 normal babies to 1 with Downs. Those are so much better odds.

Did the doctor explain the results to you?

[geckogirl]

Rio - KEEP THE FAITH, MY FRIEND!!!!!!!!!!!!!! You and your baby are going to be fine! Lots of women get false positives on these early tests (one reason why I didn't do it) and go on to have normal, healthy babies. Did you doctor speak to you about the results? Do they now want you to do an amnio? Remember that these screening tests are only a guess and an amnio can tell you for sure. Please keep us posted on what your doctor recommends. You are in my thoughts......

[TammyS]

I agree, Rio. These tests are often wrong. What did the doc actually say about it?

[Mellie_1233]

Rio - I'm not sure this is bad news. Did the dr say it was bad news? Your trisomy 18/13 results look terrific. It looks like your risk of downs went down slightly from the odds based on your age. I understand that it's not as much as you would like but it's in the right direction. 1:193 means that your odds are .005181, or, just slightly greater than 1/2 of 1 percent. That's so incredibly low. Probably lower than a lot of things that we don't worry about every day, for instance, it's probably lower than the odds that you'll have a heart attack in the next 20 years, or lower than the odds that you'll have breast cancer in the next 10 years (sorry if these examples sound scary -- I only mean that your chances seem well below many things that we all know are out there but that we don't usually worry about regularly).

Did your dr talk to you about false positives? In order to accurately screen in cases w/true conditions this test has to screen in many more false positives. In fact, what I read was that the great majority of "positives" are false. Did you dr talk to you about that?

That said, what you want to hear at the nuchal is that you hit it out of the ballpark and you are totally safe. I totally sympathize with you that you didn't get that feeling today from the downs screening (although you hit it out of the park w/the other one!).

Are you going to purue the CVS? Did the dr recommend it?

[riogirl71]

The geneticist said that anything under 1:300 is an increased risk for Down Syndrome and since mine was 1:193 that they recommended the 2nd trimester ultra sound and she talked about an amnio but didnt influence us. The chances of a miscarriage with amnio at UCSF is 1:350.

I have tried to talk to DH and he is supportive but he doesn't know how to deal with it when I just sob. I don't want to do CVS because I feel it is risky, but I guess I am leaning towards amnio, she also recommended expanded AFP test at 15 weeks but that's just another stupid blood test and nowI am scared of those things.

The doctor only did the u/s and said things wer great, the geneticist gave me the final results together with blood panel. So based on Nuchal measurement the baby is perfect, based on this HCG and PAPP-A the baby is high risk. She never mentioned false positives, just that these were 85% accurate.

I am trying to find out online what this PAPP-A is and how come it screwed up my Downs risk this much...

Now I have to wait until May 21st for amnio and it will drive me insane!

Thank you for your kind words, you girls are the best support system anyone can ask for!!!!

[Mellie_1233]

They didn't talk to you about false positives? Here's a link:

http://www.americanpregnancy.org/prenat ... creen.html

It says that 5% of normal pregnancies will screen positive. That's 1 in 20. Or, at least one person on the October message board was gonna screen positive even if no one on the board is really positive.

Sorry I don't have anything on PAPP. I have seen lots of posts from women who had positive results on the nuchal and then found out there was nothing wrong.

Don't you have the option of doing the CVS? That's supposed to be done around now I think. Then you don't have to wait. Maybe someone else can chime in who knows more about the CVS.

[JustinesBaby]

*

[tryw8]

riogirl71:

I had similar blood work results for Downs as you did. I did an amnio two weeks ago. I got the final results from the amnio and it came back NEG for Downs. My fetal maternal speciliast told me, "Congratulations!!! Please ENJOY your pregnancy."

It's easy to say, but try to relax. It drove me nuts from the time we did the quad test to the nuchal scan to awaiting the preliminary amnio report.

Karen

P.S. - I'm 40.

[riogirl71]

I found this article interesting, in regards to Nuchal/Hcg/Papp-a screen:

In singleton pregnancies, the false-positive rate for Down syndrome screening was 1.4% and 1.9% greater for the IVF and ICSI groups, respectively, compared to controls for a general screening population.

CONCLUSIONS: Patients undergoing assisted reproduction techniques should be counseled about the possibility of increased false-positive rates. Larger studies are needed to confirm this observation and to develop appropriate adjustment factors to reduce false-positive rates.

Thanks Mellie for the link and numbers! Thank you for all the positive thoughts and prayers!

tryw8 - thank you for your post! it gives me great hope that this is just another stressful false positive!

[KatieG]

Oh Rio im sorry all this stressful news. I dont really understand I will have to go back and re read and make since of it. I had my NT today but I wont hear anything for a week. I think I also saw that the neck measurment was 1.4. Keep the PMA and try and relex so your little bean can also. I know its easier said then done. Im sorry you have to go through this mess

[riogirl71]

to add insult to injury I just found online that a low number of the protein papp-a means issues with the placenta, premature birth, higher risk of miscarriage up to 24 weeks and underdevelopment.
DH nd I decided to go see our OB to ask him how we can monitor this or if we can re-test.

Thank you for all your thoughts and prayers!

[Babyb]

PLEASE DO NOT GET YOURSELF IN A KNOT OVER THIS (Easier said than done, I know). To share quickly, with my first pregnancy, my NT was great, but blood work showed classic DS. I was diagnosed with a 1:10 shot (you heard it correctly, 1:10 shot) of DS. After the Amnio, I was told I had a healthy little girl.

Just recently on the board, someone went through the very same thing. I'm sorry I don't recall the posting. She too had a pretty high risk (your test results are looking much more favorable than her test results). I shared my story and she came back to tell me good news as well. After her amnio, she was told she had a healthy baby girl. I've heard of soooo many false positives with the blood work and I've been a victim of the scare. Your baby needs you to be as calm and relaxed as possible right now. As difficult as that may be (I do understand), try to take comfort in these stories.

I'll be thinking of you and praying for your baby.

[k]

This is the main reason I decided against having my triple test this week! These tests are NOT accurate and from what Ive heard cause more worry than reassurance! When I was researching info 2 days ago, I came across women with a high result (such as 1 in 10) whose babies were fine and one woman who had a 1 in 500+ chance and her baby DID have DS!

Riogirl, Im afraid there will always be things to worry about with pregnancy and motherhood, thats just natural. Personally I agree with Justine, I wouldnt have an amnio because of the 1% risk of miscarriage, but if you are so worried then maybe its the only thing to put your mind at rest.

Take care

Love Kim

[Hoekey]

Rio I have really no idea what any of this means. I just wanted you to know that I am praying for you and your little one. You have been such a wonderful support to me during everything that I have had to go through. Please try to keep a PMA and hang in there hun. I hope that meeting with your Dr. will help reassure you.

Hoekey...