# NT Scan showed high risk for Down's



## bbforme

I just got the call from my doctor's office that my NT Scan is back with abnormal results. Specifially, the blood work. The results, I was told, shows that my baby is at a higher risk of Down's. At my age (36), I was told my risk level should be 1 in 314. My numbers are 1 in 41. 

I'm trying not to freak out - but what I don't understand is the problem lies in my blood work. Blood doesn't lie, does it? What does this mean? The nurse wouldn't/couldn't tell me much. I was told I'd get a call in the next few days for an appointment for a Level II ultrasound. I was told that if those results are abnormal, then I would have an amnio. 

I feel so lost - I get this bad news, without any information/support to help sort this out...I just don't know what to do with myself. I was also told that the doc wouldn't want to see me until I'm 16-weeks because an amnio can't be done before then. So I have to wait weeks in this limbo. Crying throughout the day at the thought that something could be wrong.....

Please, someone shed some light on this for me. What was the NT scan blood work all about? With a level II ultrasound, do you get your results on the spot? What's the amnio all about? 

ANY information at all is helpful. I'm in the dark.


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## Want2bMum

Hi Hun,
I am sorry you are going through this.

Basically, in order to avoid invasive and expensive screening to all women, scientist came up with non invasive tests which consists of ultrasound (nuchal traslucency) and blood work (PAPP-A pregnancy associated plasma protein) to be combined.

What they want to see in the blood test is the amount of PAPP-A because research have demonstrated that levels can be elevated in case of down syndrome.

The doctor though, will only give you a statistical probability. This is because, although research have shown the link between high PAPP-A levels and down syndrome, not all women will be carriers of a DS child and vice versa.

Therefore, there will be cases in which high levels didn't mean DS and cases in which level were not high enough to consist a risk but mother were carriers of a DS child instead.

The doctor told you that you have 1 in 41 chances of having a DS child, this is the same of saying you have 40 in 41 chances of having a normal child. Of course, this causes concern; 1in 41 isn't as good as saying 1 in 314, but still the error margin is reasonable for you to hope.

Don't stress to much if you can, go for the amnio and take each day as it comes.

The best of luck


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## Want2bMum

sorry hun,
didn't read your other questions...

the NT scan looks at the fluid collected on the back of your baby's head, if it is too much, then the risk of having DS increases. When combined with the blood work, the software also takes into consideration maternal age which is another factor that increases odd for having a DS child.

The doctor gives you the estimate statistical risk index according to these 3 aspects: maternal age, NT scan and blood work.

When you have an amnio done, the doctor will collect the fluid around your baby. It is an invasive procedure, they will have to insert a niddle in your tummy and collect some of the fluid. When they analyse the fluid, they go and look at the baby's kariotype as DS is a chromosomal aberration, at that point the diagnosis is definitive.

Don't panic over the amnio, doctors do them everyday and the risk is minimal.

good luck


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## bbforme

Want2bMum said:


> sorry hun,
> didn't read your other questions...
> 
> the NT scan looks at the fluid collected on the back of your baby's head, if it is too much, then the risk of having DS increases. When combined with the blood work, the software also takes into consideration maternal age which is another factor that increases odd for having a DS child.
> 
> The doctor gives you the estimate statistical risk index according to these 3 aspects: maternal age, NT scan and blood work.
> 
> When you have an amnio done, the doctor will collect the fluid around your baby. It is an invasive procedure, they will have to insert a niddle in your tummy and collect some of the fluid. When they analyse the fluid, they go and look at the baby's kariotype as DS is a chromosomal aberration, at that point the diagnosis is definitive.
> 
> Don't panic over the amnio, doctors do them everyday and the risk is minimal.
> 
> good luck


*THANK YOU SO MUCH, Want2bMum*

The information you provided is VERY HELPFUL! I am trying to remain positive for the sake of my family and my sanity. I have to wait until I'm 16-weeks to go in for my Level II (and amnio if needed). I'm 14wk2d today. The next 2-weeks are going to be long ones. Reading up on this, it seems like there are alot of women out there who get abnormal results, only to go on to have healthy babies. I just pray I'm one of those women. Seems all I can do for now...pray....

Thank you, Want2bMum.


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## needshelp

Hi there! I had blood work at 16 weeks and my AFP levels were "slightly' elevated. I was also in immediate panic mode so I called my ultrasound to discuss what this meant. he said that those tests are most often false positives, especially with a slightly elevated risk. he also said they should not be performed prior to 16 weeks, I'm not sure if that is the same you got, but I know they gave me the NTD and Downs results from bloods at the same time...I feel u on the waiting! it's been a long two weeks so far since I have some risk involved!! feel free to msg me if you want to chat!! I'm thinking of you and hoping all is well!


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## mafiamom

there are SO many false positives with these stupid tests. i am sorry you are going thru this.... sooooo many women do only to worry theirselves sick and go on to have a healthy baby.

i am 40 so my dh really wanted to get the testing. i had reservations as all my research showed major false positive results. sure enough, i got the dreaded phone call.... 1:3 chance my baby had trisomy 18 from my blood work. (incompatable with life.) 

i was in a complete panic and had an amnio done right way (this was from the second part of the quad screen done at 16 weeks). i had the amnio and my baby boy is totally perfect. so much worry for nothing. that being said.... blood test, while not being a lie per sea, are just a screen that uses typically statistics to put you in a certain risk group. well, not every women is the same, so you have to take those stats with a grain of salt.

i hope someday they are able to come up with a more accurate way for non invasive testing of this type of thing. until then, they will continue to scare most women to death with their in accurate "screening" process.

i wish you the best of luck. truly, the odds are in your favor of everything being just fine!!!


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## bbforme

*Thank you needshelp and mafiamom  *

I'm on pins and needles waiting for the dang hospital to call me with my appt schedule! What I've noticed about my test results is that the nasal bone measurements were not calculated with the blood results. I know for a fact the baby had a nasal bone because we discussed it with the tech while she took measurements. I'm really holding on to that - giving me hope that baby is just fine....That and the fact that there are SO MANY abnormal results. 

Here are my numbers:

Free Beta hCG....1.26MoM.................Percentile, 60
PAPP-A............0.89MoM.................Percentile, 50 
NT..................2.9mm/+1.20 Delta....Percentile, 95

Nasal Bone "nasal bone information was not incorported into risk calculation because sonographer participation in nasal bone quality review program could not be verified."

So what I take these numbers to mean is that my Free Beta hCG are in the 60 percentile, which isn't that far off normal, right? And that my PAPP-A is right down the middle, normal. The way I interpret this info is that the NT measurement is what's putting me in "high risk". 

I hope I'm reading this correctly. Would be nice if the dang m/w office would explain this stuff to me. I'm REALLY upset that I was just given bad news and pushed out the door w/o any questions answered. 

I don't know if I should even bother with part II of the genetic screening. I'm so upset about all of this. All I can do now is pray and wait. 

THANK YOU LADIES, for your kind words and support. It really does make a difference :hugs:


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## Want2bMum

Do you live in the UK? If so, were the tests done under the NHS? It sounds quite unprofessional to me just not to explain any further the situation and not to discuss nasal bone measurements...


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## bbforme

Want2bMum said:


> Do you live in the UK? If so, were the tests done under the NHS? It sounds quite unprofessional to me just not to explain any further the situation and not to discuss nasal bone measurements...

Hi Want2bMum

I'm located in the US. I'm in Texas. 

I agree with you 100% regarding your comment about being treated unprofessionally. I called my m/w office's to question the nurse regarding the nasal bone comments on my test results "nasal bone information was not incorported into risk calculation because sonographer participation in nasal bone quality review program could not be verified". 

Sadly, but no surprisingly, the nurse could not offer me an explination. She said for me to just wait for the hospital rep to call me with my future appointment information and I can then talk to a specialist. I'm going to be sure to voice my irritation during my next appointment with my m/w. The whole reason I picked a m/w over and ob/gyn was because I thought I would be treated with more love and care. I see I was mistaken....


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## Want2bMum

I am so sorry to hear all of this,
you see I was asking if you were in the UK because you could have got a private scan to be combined with the blood results you already have, it wouldn't have costed the earth and you could have same day results. I think in the US prices are star high, but you are almost there. Just a bit more than a week to reach 16, hang in there!

good luck

please keep us updated


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## nervouspains

I am very sorry to read this, I can 100% relate to how you feel.
My first baby had downs- I had a cvs and at my 12 week scan the fluid was 7.30, so my chance was 1 in 2....

You can have a CVS done between 11-15 weeks, and then the amino from 16 weeks.
The CVS takes a little from the placenta, while the amnio is a little more intrusive of getting a sample from the waters your baby is in.
Both, sadley and unfortuntley, carry a risk of miscarrage.

You can read my story if you want, or feel free to pm me as I know 100% how you are feeling.
Also, that was my first pregnancy and I was only 22, so it can happen to anyone.
I was very ignorant to the fact that it could happen, but it did, and unless anyone has experienced it or can relate, then no one has the right to judge or say what they would do in the suituation :hugs:
I wish you all the best and hope for you have a happy outcome xx

https://angel-lansley2009.gonetoosoon.org


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## bbforme

Want2bMum said:


> I am so sorry to hear all of this,
> you see I was asking if you were in the UK because you could have got a private scan to be combined with the blood results you already have, it wouldn't have costed the earth and you could have same day results. I think in the US prices are star high, but you are almost there. Just a bit more than a week to reach 16, hang in there!
> 
> good luck
> 
> please keep us updated


THANK YOU :hugs:


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## knitbit

Try to keep perspective and not worry too much. 1/50 still means only a 2% chance of a problem. That's not too bad, you know?

The fetal medicine foundation has a video that explains the screening fairly well. They are leaders in the field. If you have profile pictures of your scan, you may be able to see the nasal bone yourself to give you a little more peace of mind.

https://www.fetalmedicine.com/fmf/o...This=true&TB_iframe=true&height=370&width=350 

Good luck and I hope all is well. If the amnio comes out normal, the odds are that everything is OK. 2.9 isn't a large enough number to make you start worrying about other problems. I had a measurement of 5.3 coupled with a bad cardiac scan with my last pregnancy (ended at 14 weeks). This time around I was going to be thrilled with any number less than 3. Thankfully this time we got good NT numbers, but given my age 39, I still get high odds of 1/81. I would think of your number just meaning that there may be benefit to having amnio and not an indication that there is a problem.


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## Want2bMum

Isnt the guy talking in the video a famous doctor that works in the UK?

I think I have seen him performing amnios and other more risky procedures on a documentary, I think he works in London...

not sure if I am mistaking though...

thank you knitbit for this video, it is really interesting and I agree with you!


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## genies girl

The waiting is the worst part isn't it, I thought I'd just throw my story in , one of twins was given a 1:16 risk neck measurement was 2.8mm we decided against amniotic because of the risk of miscarrying both twins so we opted fir detailed scans a possible heart problem was picked up but no soft markers but the risk was changed to 1:10 we carried on with the pregnancy as best we could and decided to deal with whatever would be as it was when Amelia was born she was absolutely fine with no problems ! 

I hope that everything works out for you xx


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## Blah11

Sorry to hear this but the stats are still on your side. You may have a 1 in 41 chance, but you also have a 40 in 41 chance to have a baby with normal chromosomes.

:hugs:


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## knitbit

Yes Want2bMum, he's in the UK. I found the FMF after all the problems with my last pregnancy. They have great documentation and have written a lot of papers about the first trimester screening. The perinatologist here didn't really want me to do a lot of research, but did admit that they are leaders in the field and that their data is good. Here, they don't use the nasal bone or the palate angle, mostly it seems because of the cost of training all the techs and getting standard measurements. Plus there are egos involved... It's too bad. I also think that whatever formula that they are using now in the US is very pessimistic. The starting age risk here is much higher than what FMF quotes. For me, they give me a starting risk of 1/65, but FMF says 1/89. That's why I take it more as an aid to see if amnio is worth it. They are probably allowing more false positives in an effort not to miss anything... 

Like genies girl, I'm blessed with twins this time around, so I am less likely to jump at amnio for that as well as the fact that I now carry blood antibodies. I don't want to risk creating a problem, when I believe the risk is fairly low.


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## Want2bMum

wow... the things you learn when you less expect it...

I couldn't imagine that in the US those measurements were not used, here in the UK we regard US doctors and health system as the best. Health system is private and most of the times not fair, but we think because it is private it must be so much better...

I hope everything works out for you, I understand your fear of the amnio...

good luck hun!


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## bbforme

Well, the genetic's office just called me and said my Level II u/s and amnio is scheduled for 07 June. I am going to have my consulation early that morning so I can hopefully make and informed choice, though I was already told by the doctors office that the u/s wasn't a good indicator and pretty much pointless. Just going to try to arm myself with information. 

THANKS ALL.


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