Bad News Nuchal Test ?!?! Help!

Announcement of pregnancy and birth following assisted reproductive treatment.
riogirl71
Valued Contributor
Posts: 2518
Joined: Sat Dec 15, 2007 12:10 am
Location: CA, USA

Bad News Nuchal Test ?!?! Help!

Post by riogirl71 » Mon Mar 31, 2008 7:38 pm

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!
Last edited by riogirl71 on Mon Mar 31, 2008 9:25 pm, edited 1 time in total.
me 39 + DH 46 low mot - chemo
#3 IVF Lost one twin at 8 wks
Image
#2 IVF May 2010 Ectopic
#1 IVF
Image

Sponsor
 

LauraLou
Regular
Posts: 397
Joined: Sat Apr 08, 2006 3:18 pm
Location: Texas

Post by LauraLou » Mon Mar 31, 2008 8:04 pm

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?
Me 38, DH 52
1st IVF 5/06- BFP m/c
2nd IVF 9/06- BFP identical twin boys!!
[img]http://b2.lilypie.com/midEm5.png[/img]

geckogirl
Regular
Posts: 511
Joined: Wed Feb 07, 2007 10:18 pm
Location: California

Post by geckogirl » Mon Mar 31, 2008 8:12 pm

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......
ME 45 - DH 44 DS born 2008
FET - August 2009

[img]http://tickers.TickerFactory.com/ezt/d/1;20100;17/st/20100502/dt/-3/k/2dd9/preg.png[/img]

[img]http://tickers.TickerFactory.com/ezt/d/2;10721;14/st/20081002/n/Declan/dt/-3/k/4879/age.png[/img]

TammyS
Valued Contributor
Posts: 1386
Joined: Sat Dec 29, 2007 10:46 pm
Location: Akron, Ohio

Post by TammyS » Mon Mar 31, 2008 8:14 pm

I agree, Rio. These tests are often wrong. What did the doc actually say about it?
Me~42/DH~48
3 IUI
IVF 1~1.28.08 Zach
IVF 2~4.5.10 M/C
IVF 3~8.6.10 BFN
IVF 4~9.5.10 M/C
IVF 5~10.30.10 BFN
IVF 6~11.29.10 M/C
IVF 7~2.3.11 M/C
IVF 8~Cancelled
End of the road

Image

Mellie_1233
Regular
Posts: 284
Joined: Wed Sep 26, 2007 9:20 pm
Location: Chicago

Post by Mellie_1233 » Mon Mar 31, 2008 8:21 pm

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?
ME: 36 DH: 36 - now both 39
DOR

Image

Image

riogirl71
Valued Contributor
Posts: 2518
Joined: Sat Dec 15, 2007 12:10 am
Location: CA, USA

Post by riogirl71 » Mon Mar 31, 2008 8:29 pm

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!!!!
me 39 + DH 46 low mot - chemo
#3 IVF Lost one twin at 8 wks
Image
#2 IVF May 2010 Ectopic
#1 IVF
Image

Mellie_1233
Regular
Posts: 284
Joined: Wed Sep 26, 2007 9:20 pm
Location: Chicago

Post by Mellie_1233 » Mon Mar 31, 2008 8:41 pm

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.
ME: 36 DH: 36 - now both 39
DOR

Image

Image

JustinesBaby
Regular
Posts: 470
Joined: Sun Nov 06, 2005 6:30 pm

Post by JustinesBaby » Mon Mar 31, 2008 9:00 pm

*
Last edited by JustinesBaby on Sun May 11, 2008 5:45 pm, edited 1 time in total.

tryw8
Regular
Posts: 152
Joined: Fri Jun 15, 2007 5:24 pm

Post by tryw8 » Mon Mar 31, 2008 9:21 pm

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.
Failed IUI
hysteroscopy/laparoscopy 1/07 (blocked tube,endo)
IVF 5/07 BFN
FET 11/07, BFP 12/07
07/31/2008 (508am) --> our son was born!

[img]http://tickers.TickerFactory.com/ezt/d/2;10734;107/st/20080731/n/Cody+Jordan/dt/-6/k/3c6b/age.png[/img]

riogirl71
Valued Contributor
Posts: 2518
Joined: Sat Dec 15, 2007 12:10 am
Location: CA, USA

Post by riogirl71 » Mon Mar 31, 2008 9:24 pm

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!

Image
me 39 + DH 46 low mot - chemo
#3 IVF Lost one twin at 8 wks
Image
#2 IVF May 2010 Ectopic
#1 IVF
Image

KatieG
Regular
Posts: 381
Joined: Sun Dec 30, 2007 4:04 am
Location: Houston, TX

Post by KatieG » Mon Mar 31, 2008 9:44 pm

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
ME 29 DH31
1st IVF Male Factor
DS Parker Born 10-15-08
FET Summer 2010 BFP Twins

riogirl71
Valued Contributor
Posts: 2518
Joined: Sat Dec 15, 2007 12:10 am
Location: CA, USA

Post by riogirl71 » Tue Apr 01, 2008 2:47 am

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. :cry:
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!
me 39 + DH 46 low mot - chemo
#3 IVF Lost one twin at 8 wks
Image
#2 IVF May 2010 Ectopic
#1 IVF
Image

Babyb
Regular
Posts: 224
Joined: Fri May 11, 2007 6:14 pm

Post by Babyb » Tue Apr 01, 2008 3:16 am

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.
Me: 40; DH: 30 (Demi/Ashton!)
9/14/07: 3 perfect blasts xferred
9/23/07: BFP with 745.6 Beta!!! Twins


[img]http://tickers.TickerFactory.com/ezt/d/1;20718;11/st/20080601/dt/-3/k/e978/preg.png[/img]

k
Regular
Posts: 714
Joined: Sun May 15, 2005 10:45 am
Location: West Yorkshire, UK.

Post by k » Tue Apr 01, 2008 7:50 am

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
Me 36 DH 33 Male factor due to chemotherapy. IVF\ICSI May 05 +ve.
Jenna Grace born 19.1.06 then natural BFP!
Nathan Alexander born 2.10.08
[img]http://tickers.TickerFactory.com/ezt/d/2;42;30/st/20060119/n/Jenna+Grace/dt/6/k/b977/age.png[/img]

Hoekey
Regular
Posts: 153
Joined: Mon Oct 22, 2007 9:29 pm
Location: Holland, MI USA

Post by Hoekey » Tue Apr 01, 2008 11:31 am

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...
Me 37, DH 38 Morphology
2 DD from previous marriage 14 & 17
IVF #1 w/ ICSI 6/07= BFN
IVF #2 w/ ICSI 10/07= BFN
FET #1 1/08= BFP but MC @ 8 weeks
FET April 20 (Last try), 2010, BFN

Post Reply