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Nuchal test Results

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Nuchal test Results

Postby hope33 » Mon Feb 23, 2009 9:03 pm

wondering if anyone has any insight........

just got a call from my dr about my test resluts and she told me that my test came back positive on the bloodwork. My blood work came back 1/24 chances of having downs syndrome and that the normal range fro my age is 1/266. She did say that the sonogram came back within the normal range which is anything under 3 and mine came in at 2.2. so she told me the next step is to either do a CVS test which has to be done within the next couple of days or wait another month and do the amnio. with the CVS test there is more of a higher false positive and a higher rate of miscarriage 1/100 vs the amnio which is 1/350. i really need to know if anyone has any insight in the results of the CVS or had any experience with it and for any advice. My heart is broken right now after everything we have gone through to get pregnant. i am really numb
Me 34
DH 39- Male Factor
DC 3 1/2
TCC #2

IVF #1 4/04 BFP Twins lost one at 11weeks, delveried DS Jan 05 c-section
FET Cycle 6/08 = BFN
FET Cycle 11/08 = 2 embryos 3 day transfer BFP! beta #1 9 days- 36.4 beta#2 95.6
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Postby babyhope1 » Mon Feb 23, 2009 10:35 pm

I am so sorry to hear this hope. I know that test has a high number of false positives. It is merely a statistical test, the CVS and Amnio are diagnostic tests meaning they are more accurate and can tell you what you are dealing with. The ultrasound sounds good so think of that positive news, not their blood test.

If I were to proceed with an amnio or CVS it sounds like the amnio has lower odds of miscarriage with more accurate result. Then it depends on your decision if you were to think of the worst case scenerio, would knowing change the pregnancy (termination) or simply give you time to prepare for your bundle. Are the risks worth the test to you?

I think your actions will depend on what your end result decision is but don't skip ahead, one thing at a time and next is your diagnostic test. From then, the next decision etc. you can't come to a conclusion right now without all the questions answered, just gather the info now. Remember, test has a high number of false positives. Even with that, 23 out of 24 the baby has no problems anyway. We support you through it all.
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Postby kerpupples » Mon Feb 23, 2009 11:02 pm

I had a friend who got a false + from both the nuchal and the CVS. She ended up having an amnio as well which came back negative and her daughter is now 3 and completely healthy. Based on that story, I'd go straight to the amnio as well. What you do from there, is of course a very diffcult but personal decision. Babyhope1 is right, at least you would be prepared to deal with a Down's baby if that is the case.
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Me: 39 DH: 41 Male Factor
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Postby hope33 » Mon Feb 23, 2009 11:19 pm

thans Kerpupples and babyhope1> do you know where i can find the chaces/rates anywhere on the web. i have been looking to see what my chances are with the 1 out of 24 number to compare but i haven't found anything. Isn;t that a 4% chance of the baby having down syndrome or am i reading the numbers wrong?i would think after doing IVF where they pick the best embryos of the best that this really wouldn't be an issue. also this embryo is from 5 years ago and you would think after all it has been through being frozen and thawed that only the strongest and best would survive. I really am at a stand still and i don'r know which procedure to do becasue of the risks involved. If i wait too long and have to terminate i would be putting myself through a higher risk and if i do the CVS i would be putting my baby at a greater risk- don't know which route to take! I didn't even get a chance to talk about this at length with DH but i know he is all concerned as well. The positives right now in my favor that is keeping me somewhat sane is that the sonogram portion came out normal. I wonder if a low HCG level throws the test off or not?
Me 34
DH 39- Male Factor
DC 3 1/2
TCC #2

IVF #1 4/04 BFP Twins lost one at 11weeks, delveried DS Jan 05 c-section
FET Cycle 6/08 = BFN
FET Cycle 11/08 = 2 embryos 3 day transfer BFP! beta #1 9 days- 36.4 beta#2 95.6
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Postby missmolly » Mon Feb 23, 2009 11:38 pm

After reading your situation I asked myself "what would I do in this situation?" If it were me I would wait and have the amnio - less risk and 100% accurate (well 99.99999%). As hard as it is, try not to get too carried away with stats. They don't prove whether or not your baby has a problem - they just make you worry more. just remember, so many peoples initial results come back with an increased risk, but further testing goes on to show nothing is wrong.

Good luck & take care
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Postby jennywit » Mon Feb 23, 2009 11:44 pm

Hope-want to give you a personal experience of HELL that I went thru with the Nuchal Test. I too had a normal measurement 1.5- Anything under 3 is fine-they say. I at 35 had about 1 in 266 chance of a baby with downs too. When I got the call of my bloodwork my odds changed to 1 in 49!!! I was so devastated that I can't even tell you I really remember the next week or so. Long story short, I opted for the CVS since it could be done sooner and I couldn't wait any longer to find out. Although you are right, it does have a higher rate of mc, I had it done at a great hospital in my state-the docs do them quite often-I really think that is the key! I'm not gonna lie, very uncomfortable, it was done vaginally, but the good news is my little boy is just FINE!!!!!! I am 34 wks now, I KNOW it is easier said than done, but please try to relax-I ended up learning that there are a LOT of false positives, I wish I knew that ahead of time because I was so sick with sadness, that I probably wouldn't have done the screening to begin with since it just caused me unnecessary fear. Best of Luck to you!!! Jennifer
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Postby kerpupples » Tue Feb 24, 2009 2:50 am

You're right, that is 4%. Pretty low. I don't think that when they choose the embryos to transfer that they can tell anything genetically about them unless you do the PGD prior to transfer. If your choice would be to terminate if it is Down's you may want to go the route of the CVS.

Good luck hon - I imagine things are probably just fine. Please keep us posted.
Amy
Me: 39 DH: 41 Male Factor
3yo DD from FET
IVF PGD clinical trial, FET Jan 2012 Beta 1/14 447, Beta 1/16 1161 U/S 1/30 it's twins!
Graham and Audrey born 9/5/12. 37w4d, no NICU time!
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Postby hope33 » Tue Feb 24, 2009 2:58 am

thanks everyone, your warm responses have really helped keep me sane today. we have an appointment with my obgyn tomorrow and she will be refering us to a genetic specialist? i also get copies of my results. I will keep you all posted after my appointment.
Me 34
DH 39- Male Factor
DC 3 1/2
TCC #2

IVF #1 4/04 BFP Twins lost one at 11weeks, delveried DS Jan 05 c-section
FET Cycle 6/08 = BFN
FET Cycle 11/08 = 2 embryos 3 day transfer BFP! beta #1 9 days- 36.4 beta#2 95.6
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Postby JamieP » Tue Feb 24, 2009 10:42 am

I have been told that the nuchal fold test is a lot more reliable than the triple test (blood). Hopefully your obgyn will reassure you tomorrow. Remember you have a WAY higher chance that the baby is fine than that it is not.

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Postby hope33 » Tue Feb 24, 2009 1:00 pm

I didn't sleep all night over this. I am trying to stay postive. In my heart I think everything is fine and I try to keep reminding myself that the NT test came back normal. Going today at 12 to the dr so hope I get more answers then. That all for your positive insight!
Me 34
DH 39- Male Factor
DC 3 1/2
TCC #2

IVF #1 4/04 BFP Twins lost one at 11weeks, delveried DS Jan 05 c-section
FET Cycle 6/08 = BFN
FET Cycle 11/08 = 2 embryos 3 day transfer BFP! beta #1 9 days- 36.4 beta#2 95.6
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Postby bdantonio » Tue Feb 24, 2009 2:29 pm

my first dd they told me she had downs my 1st triemster blood n u/s said it my triple screen my level 2 u/s and a amnio shes now 4yrs old and does NOT have downs she is NORMAL
Last edited by bdantonio on Tue Mar 03, 2009 6:40 pm, edited 1 time in total.
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Postby kerpupples » Tue Feb 24, 2009 3:46 pm

I think when they do the nuchal measurement and the blood test they combine the results of the two to come up with the odds. When I had mine done I actually had to go back at 16 weeks for another blood test to update my odds. I believe this combination of tests is called the first trimester combined screening. You should ask your OB if this is what is being done for you.
Amy
Me: 39 DH: 41 Male Factor
3yo DD from FET
IVF PGD clinical trial, FET Jan 2012 Beta 1/14 447, Beta 1/16 1161 U/S 1/30 it's twins!
Graham and Audrey born 9/5/12. 37w4d, no NICU time!
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Postby hope33 » Tue Feb 24, 2009 9:42 pm

I went to my meeting with my OBGYN and i feel a little bit more at ease. we all agree ( dh my dr and i ) that we will not do the CVS Test since there is a greater risk than the amnio for miscarrying. After all i went through i rather put myself more at risk than the baby at this point. we will do another blood test _ not sure which one_ another ultrasound at 15 weeks and then we will do the amnio at 16 weeks. I also brought up the point if the First timester screening takes into account that the embryo was concieved 5 years ago when i was 30. the dr said that she would have the lab recalucate the number based on this information and she is sure we would get a different risk factor. There still might be a risk there but not the 1/24 that i was given based on my age of 35..... I dont understand why they didn't take that into account in the first place when i went to get this screening done!

Here are the numbers that i got back from the copy of the test she gave me:

weight: 140pounds
ethnicity: caucasian
pervious child hx: none
NT-2.2
CRL mm-50
Ga @ US 11w4d
Free Beta 1.95 90th percentile
PAPP-A MOM .62 30th percentile
Delta NT +.89
Downs risk Before Screening 1 in 266 after screening 1 in 24 INCREASED RISK
Trisomy 18/13 before screening 1 in 454 after screening 1 in 9061 WITHIN RANGE

i have been trying to look up on the net a chart of some sort to make sense of all this but haven't found anything. Any suggestions?

thanks to all of you who have resonded! you guys are all a great help in this most stressful time for me :)
Me 34
DH 39- Male Factor
DC 3 1/2
TCC #2

IVF #1 4/04 BFP Twins lost one at 11weeks, delveried DS Jan 05 c-section
FET Cycle 6/08 = BFN
FET Cycle 11/08 = 2 embryos 3 day transfer BFP! beta #1 9 days- 36.4 beta#2 95.6
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Postby riogirl71 » Mon Mar 02, 2009 9:38 pm

Hi! I just wanted to share my story, I had low papp-a numbers and they gave me increased risk, I cried and cried. My OB recommended doing the level II u/s and blood tests, I frieked out for a month wondering if I should do an amnio. I waited and then did the morphology u/s and blood tests and everything came out fine with my odds at 1 in 750 so I relaxed. My baby boy is healthy as can be, there are a ton of falsepositives out there. Try the level II and 2nd trimester blood tests first and as hard as it is relax - stress is not good for you or the baby. Good luck and much health!
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Postby hope33 » Mon Mar 02, 2009 10:10 pm

Riogirl: thanks for posting your story! It really is good to hear of other positive stories. I was really really stressed out last week and I almost feel disconntected to my baby/pregnancy now because of this. I almost feel that I don't want to get too attached just in case the results don't work out. On friday I met with my dr and she didn't even give me the full checkup visit that I thought I would get. She only located the heartbeat with the doppler for 2 seconds and then stopped. Didn't even tell me what the baby heartrate was. And the nurse was trying to be too compasionate like the reults were arleady in.. DH said I was reading too much into the visit and said I was being extra sensative. I have the 2 trimester screening scheduled and the dr said don't expect the results to be much different than the first. That is scheduled for 3/12 which is a blood test and the level II ultrasound. Then I have the genetic specialist app on 3/17 then the amnio is scheduled for 3/25 and the dr said we would have the results the next day. We will have to wait and see... Thanks for all the support and love to hear more stories if you ladies want to share
Me 34
DH 39- Male Factor
DC 3 1/2
TCC #2

IVF #1 4/04 BFP Twins lost one at 11weeks, delveried DS Jan 05 c-section
FET Cycle 6/08 = BFN
FET Cycle 11/08 = 2 embryos 3 day transfer BFP! beta #1 9 days- 36.4 beta#2 95.6
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