# Down's Screening - Been told no point having blood test?



## LancyLass

Hi

Just had my first appointment with the midwife and she said there's no point having the blood test to screen for DS because as I'm over 36 it'll automatically come back as high risk. It's the first time I'd heard that. Has everyone else been told that too?

Surely if they're looking at the chemicals in the blood they can still give you a greater or lesser risk within your age category?

Just wondered what other over-36s experience of the screening process has been?


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## Mbababy

Well I am 38 and just got my blood test back...and am low risk. I'm not sure where your doc is coming from...:shrug:


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## lilmamatoW

LancyLass said:


> Hi
> 
> Just had my first appointment with the midwife and she said there's no point having the blood test to screen for DS because as I'm over 36 it'll automatically come back as high risk. It's the first time I'd heard that. Has everyone else been told that too?
> 
> Surely if they're looking at the chemicals in the blood they can still give you a greater or lesser risk within your age category?
> 
> Just wondered what other over-36s experience of the screening process has been?

I was 36 when I was pregnant with my first and I had blood tests and the nuchal screen and it came back low risk despite being 36. So, I am not sure where your midwife is getting that from. I would go back and request a test, if you are able.


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## smellie_melli

LancyLass, I have never heard anything SO ridiculous!

When assessing your risk they factor in your age, your blood results and the measurements from the scan. This gives an accurate estimate and without one aspect that wouldn't be the case.

When I had my scan a couple of weeks ago the sonographer gave us the measurements and actually said "that all seems fine but you need to wait for the blood results as that gives a much more accurate indication".

If you want to know your risk DEMAND the test. I do find that sometimes m/w do what they think is best and you have to push for what you want if it's different.

For what it's worth, my result for this baby (I'm 37) was low risk and my last one (I was 36) was also low risk so age doesn't equal high risk!


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## AngelUK

I agree with the other ladies here, what you were told is just not true. I am still waiting for the results of my blood test. I was told the same as smellie_melli: that my NT scan looked fine but that the blood test would be more conclusive. My friend who is the same age as I (41) and who just had her second baby, was low risk too. She had her first baby at 39 and she told me that her numbers were actually better on the second baby than on the first. Do insist on the tests if you want to have them. Good luck xxx :)


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## happymamma

This is exactly what I was wondering a few weeks ago. I heard that just by factoring in our age, it makes it higher risk then if they were to put in that you were say, 25. I feel that they automatically consider us high risk because of age,and not going solely on the blood results and the scan measurements. I dont understand why they have to put the age in? Its an assumption! Dont you think?


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## Torontogal

I am 36 and I was offered the tests too (and am getting them). Never heard anything like that!


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## animalcracker

Honestly, the advice some of these Drs and nurses give patients scare me LOL. Let me guess..are you NHS? 

I am 39 years old. Pregnant with my first and my NT results came back low risk (numbers were 1 in over 1200 for a chromosomal abnormality).

I'm sorry you are getting this wrong information!


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## Garnet

Wow I was 36/37 and 39/40 when I had my kids and I did both tests done on my children.


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## Omi

i had mine done and im 41 and low risk too.. :wacko:


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## rjsmam

weird! I specifically asked my mw today if i'd automatically be high risk as i'm 36...... she said no - not until you're over 40......



x


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## happymamma

Why would even being over 40 make you high risk? I dont understand all this, all I know is Im getting the tests done, if I can get an apt for it,and Ill ask my dr questions after. Im kinda anxious as to what my dr will say :) Ill let you all know!


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## rjsmam

happymamma said:


> Why would even being over 40 make you high risk? I dont understand all this, all I know is Im getting the tests done, if I can get an apt for it,and Ill ask my dr questions after. Im kinda anxious as to what my dr will say :) Ill let you all know!

good luck will defo be interested to hear how you get on as we'll testing too!


x


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## Mrs B mum2b

I had scan and blood tests for screening and came back low risk - at 38yrs old! I think I would change mw if possible!! Good luck


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## LancyLass

Thanks ladies. Yes, I'm NHS - and unfortunately I have no choice of midwife, it's the one that comes with my GP practice and it's supposed to be the best GP practice in town so I don't really want to change!

TBH I'm a bit confused. I've been reading the NHS leaflet the midwife gave me about screening and it seems there might be two different blood tests? There's an early blood test you have with the NT scan or there's the triple/quad test for between 15 and 20 weeks. I think it might be that one she was saying there's no point having. I vaguely remember her saying something like 'the quad test.' She wasn't particularly good at explaining it.

I don't get the NT scan on the NHS anyway so am having that done privately and they say they take a blood test at the same time as the scan - so I guess that covers it?


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## AngelUK

I have no idea about the quad test, I wasn't offered one, just the amnio if I should be high risk. But why aren't you getting the NT scan on the NHS? I did. And the blood test that comes with it. xxx


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## LancyLass

AngelUK said:


> I have no idea about the quad test, I wasn't offered one, just the amnio if I should be high risk. But why aren't you getting the NT scan on the NHS? I did. And the blood test that comes with it. xxx

I guess it's the NHS postcode lottery. My health authority doesn't offer it.


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## AngelUK

That is strange. May I ask how much it will cost you to have it done privately? And will you have to travel really far to get it? I don't think it right that some get it for free and you have to pay for it just cause of where you live :( xxx


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## LancyLass

AngelUK said:


> That is strange. May I ask how much it will cost you to have it done privately? And will you have to travel really far to get it? I don't think it right that some get it for free and you have to pay for it just cause of where you live :( xxx

Just looked it up. Mine is one of only about two or three PCTs that don't offer it: https://fetalanomaly.screening.nhs.uk/localscreening

You're right, I think it's disgusting and I'm furious! It seems to work on the basis that if your local hospital don't offer it then you can't have it, which I find really odd because I thought you were supposed to have patient choice on the NHS and be able to choose any hospital in the country for treatment.

I'd write to my MP except I don't want to tell anyone I'm pregnant for a good few weeks!

It's going to cost me £169. As for distance, that's an odd one. Both my midwife and my doctor told me the nearest place that does it is Leeds (I'm in North Lancashire and that's an hour and a half journey at the minimum.) However the midwife said she wasn't allowed to give me any details because it's private and she's NHS! She said I should google "Leeds screening". However I couldn't find anywhere with that name! But I did find somewhere in Preston that does it, which is just 20 miles away and also in Manchester - still much nearer than Leeds. So the whole thing is just bizarre and ridiculous and frankly pretty appalling!

I'm having coffee with a pregnant friend tomorrow. I'm going to see what her doc told her (she's at a different practice to me) and then work out how far up the NHS food chain I've got to start complaining!


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## SabrinaKat

Well, I was 43 when I became pregnant (am 44 now) and am only considered 'high risk' because it's my 'first' pregnancy (I had an m/c in August 2009); my ob/gyn said that she at 29 was high risk for her first pregnancy.

We did the bloods/NT test at 12wks and my odds went from 1/27 (age) to 1/162, after the 20 wks scan went to 1/300 for downs, others went from 1/140 to 1/955, so we decided not to do cvs or amnio as nothing seemed to be 'abnormal'... I am still a little worried, but am cautiously hopeful that all is well...

best wishes


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## AngelUK

I hope you do manage to complain to someone and that something gets done. I would totally write to your MP when you are ready to tell about your pregnancy. This surely is a cause that should be looked into! I can sort of accept that your postcode area doesn't have the facility but then I would expect that they refer you to a near-ish hospital where you can have it and that it would be free. It is outrageous that you have to pay such a sum! And why on earth would she tell you to look in Leeds when Preston is so close? In fact I am surprised that something that close wouldn't take up screenings for your area anyway. 
I am outraged for you and I really hope you get it sorted somehow. Good luck! xxx


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## Sarah27

Think its a bit rubbish tbh! There are many over 35 ladies who have got a low risk test result based on bloods, age and nuchal. 

Our DS test came back 1:5 so obviously high risk I am 28 too.. Nuchal was okay, slightly higher than average at 2.7mm it was my blood test part that made me such a high risk... 
Its all parts of the test that are looked at and used to figure out the risk. Not just one part of the test.. :) xxx


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## jo14

i just had my booking appointment im 36 and she said that they will factor my age in but not that i wont be having it done, think she is wrong xx


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## LancyLass

jo14 said:


> i just had my booking appointment im 36 and she said that they will factor my age in but not that i wont be having it done, think she is wrong xx

I see you're in Lancashire too, Jo. Whereabouts? Are you being offered the combined test of NT scan + bloods?

Just met up with my pregnant friend. Her docs didn't even tell her about the NT scan. She was just offered the 15-20 week quad test (the one my MW has said there's no point having) but it turned out it had been taken too early. Then by the time they told her that, it was too late to take it again!! So she's had no screening at all!


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## jo14

Im near Chorley (where are you) but im going to Bolton hospital as thats where i have had all my other babies and also I cant deliver at Chorley due to complications so dont want to go to preston as its a bit far and I work in Bolton, so they are seeing me at Bolton, and yes when I saw my midwife she was really good, gave me a leaflet on all tests and I will have the NT test at my 12 week scan and bloods done and can follow it up at 16 weeks with the other test, hope you get to sort it out


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## jo14

just adding if Bolton is nearer to you they do do it as I am booked in for having it done!!! It must be newish as with my last one 6 years ago I did not have it. But worth looking into think quite a few round here do it, its not fair you have to pay to have it done privatley, if you are willing to travel to a hospital that does offer it on the NHS even if you only attend for that one appointment to the other hospital


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## LancyLass

I'm in North Lancashire so different area. From everything I've read it seems if there's no hospital within your PCT that does it then you're not allowed it :( Totally crap!


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## jo14

seems very unfair :( hope your able to get your private scan done xxx


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## LancyLass

Just spoke to my midwife again. I asked why I couldn't be referred to another hospital for the screening, even though my local hospital doesn't do it. She didn't know because she'd never been asked before! However it seems it may be to do with the maternity referral procedure. You get referred to a single hospital for the entire provision of maternity services - i.e. from scanning and processing of blood tests through to birth. As I've been referred to my local hospital (as is everyone usually) then I get whatever that hospital provides. If I'd asked to be referred to a different hospital (that does do the screening) then I would probably get it. But I'd also have to go to that hospital for everything else, including giving birth, which wouldn't exactly be convenient!


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## Junebug_CJ

LancyLass said:


> Hi
> 
> Just had my first appointment with the midwife and she said there's no point having the blood test to screen for DS because as I'm over 36 it'll automatically come back as high risk. It's the first time I'd heard that. Has everyone else been told that too?
> 
> Surely if they're looking at the chemicals in the blood they can still give you a greater or lesser risk within your age category?
> 
> Just wondered what other over-36s experience of the screening process has been?

Hun I do prenatal diagnosis and counseling for a living and this is absolutely ludicrous! You bloods and NT will be used to readjust your age-related risk (either decrease it, increase it or have it stay the same). If it is increased you can then opt for additional testing such as amniocentesis to get a definite answer. I'm so sorry you're dealing with a doc who obviously has a very biased view and is trying to impose his/her feelings on the matter onto their patients! :hugs: I would insist on having it done if it is something you want, or request a second opinion!


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## supertabby

LancyLass said:


> jo14 said:
> 
> 
> i just had my booking appointment im 36 and she said that they will factor my age in but not that i wont be having it done, think she is wrong xx
> 
> I see you're in Lancashire too, Jo. Whereabouts? Are you being offered the combined test of NT scan + bloods?
> 
> Just met up with my pregnant friend. Her docs didn't even tell her about the NT scan. She was just offered the 15-20 week quad test (the one my MW has said there's no point having) but it turned out it had been taken too early. Then by the time they told her that, it was too late to take it again!! So she's had no screening at all!Click to expand...

The quad screening includes the NT scan. The quad screening has four parts (hence "quad") comprises of two blood tests, the results of the NT scan and assessment of your age. The risks in each test are all assessed separately and then scored together to give your total risk factor. Some areas don't do the NT scan but might still do the blood tests, it wouldn't be classed as the quad screening though - so maybe your friend did get the full screening if she was told it was the quad screening?

They do have to consider age as your risk goes up with age. When I got pregnant with my daughter I was 33 and before assessing anything else my risk factor was 1 in 900 because I was aged 30-34. I'm now 35 and our second will (hopefully!) be conceived while I am in the 35-39 group and my risk factor will be 1 in 350 before taking anything else into account. **ETA: That is still not classed as within the high risk realms as far as I am aware**

If you want the screening I suggest going privately, before 16 weeks if you can. The full quad is much more accurate at quantifying your risk. If you are high risk then the next stage is invasive testing IF you want it, but this carries a risk to baby. You may want to consider how far down the road would you go, and if you feel its worth going down that road at all iykwim. We did have the quad test (under nhs, our hospital had just started doing the NT scan), it was low risk but we were fairly sure we would have the amino test if we were high risk. However two days ago a baby was born into our family who is suspected to have DS, she is beautiful and we know she will be wonderful and loved no matter what. But seeing how her parents and older sister adapt to life with a DS child may well affect our screening choices next time. Then again we may see the challenges as too much and make the same decisions next time. 

Good luck!


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## Junebug_CJ

It's also important to remember that these tests pick up conditions much worse than Down syndrome (although 50% of Down babies have severe congenital heart defects requiring surgical interventions) such as trisomy 18 and trisomy 13. 95% of these babies die between conception and the first month of life and the remaining 5% survive but are severely developmentally impairs (never learn to walk, talk) and have congenital defects that cause them many health concerns...


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## Nrs2772

I just took this blood test and do not have the results back yet, but I asure you my doctor did not tell me there is no point in taking the blood test. Quite the contrary.


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## kosh

LancyLass said:


> Hi
> 
> Just had my first appointment with the midwife and she said there's no point having the blood test to screen for DS because as I'm over 36 it'll automatically come back as high risk. It's the first time I'd heard that. Has everyone else been told that too?
> 
> Surely if they're looking at the chemicals in the blood they can still give you a greater or lesser risk within your age category?
> 
> Just wondered what other over-36s experience of the screening process has been?

funnily enough my MW said something along those lines too...but I'm 40! 
her opinion didn't matter to me that much because I'd decided to have a CVS done anyway. when i had the procedure I told the screening MWs what my MW had said and they said it's nonsense!
I did quite a bit of reading about this, and it seems that only if you are over 45 will the test always come back as high risk!


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## amjon

I was told not to have the screenings done if I didn't plan on having amnio or CVS done. It's not a test that tells you for sure one way or the other. (Plus it would have cost me almost $400 out of pocket.)


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## smellie_melli

*LancyLass* I've just been reading this and am grrrr on your behalf. 

Just a quickie about who provides your care- I couldn't decide which hospital to go to during my last pregnancy ( I'm midway btw 2) and my midwife said I could choose one and change to the other at *ANYTIME* during my pregnancy. 

Might be worth going back to m/w to ask to be referred to hospital that does the test to save you having to go private?


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## LancyLass

supertabby said:


> The quad screening includes the NT scan. The quad screening has four parts (hence "quad") comprises of two blood tests, the results of the NT scan and assessment of your age. The risks in each test are all assessed separately and then scored together to give your total risk factor. Some areas don't do the NT scan but might still do the blood tests, it wouldn't be classed as the quad screening though

Thanks for your response *supertabby* but according to my NHS Screening booklet that's not right. There's the Combined Test which is the NT scan plus a blood test, done between 11 weeks and 13 weeks 6 days. Then the Quad Test is a blood test only, done later in pregnancy. This is what the booklet says:
_"If it has not been possible to have the combined test in early pregnancy, you will be offered a blood test between 15 weeks and 0 days to 20 weeks of pregnancy. This test looks at different substances to those measured in early pregnancy. Like the combined test, a computer program uses the results and the mother's details to work out a risk figure. This test is known as the quad (or quadruple) test."​_
I assume most of you don't have to worry about the Quad Test because you've been offered the Combined Test - hence the issue about the age risk factor never arises.

Just to clarify, the midwife didn't say I shouldn't have the Combined Test, it's just our area doesn't offer it. It was just the Quad Test she said I shouldn't have.

*Junebug*, I'd be interested in your professional opinion on the differences between the early Combined Test and the later Quad Test.

Anyway, I'm booked privately for the Combined Test now so hopefully I don't need to worry about the Quad Test anyway.

Thanks everyone for all your help.


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## Sunshine12

Hi. Ive been told I will get an NT scan done on the NHS but does the blood test automatically get done with the NT scan? Also, is there another scan that tests for different things but you have to pay for? The whole quad/NT thing is confusing me. :blush:


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## April2012

well, because of your age you will automatically be higher risk then if you were 25 and all the blood work came out the same because age does factor in. However, other aspects of the screen and blood work add to the high risk diagnosis. that is why so many women 36, 41, etc...come back as low risk. I came back as low risk (DS 1 in 6000 or something like that), but I am still getting an amnio done.


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## LancyLass

Sunshine12 said:


> Hi. Ive been told I will get an NT scan done on the NHS but does the blood test automatically get done with the NT scan? Also, is there another scan that tests for different things but you have to pay for? The whole quad/NT thing is confusing me. :blush:

Most likely the blood test would be done with the NT scan, most of the NHS areas that offer the NT scan offer the blood test with it, but you can check what your local area does here: https://fetalanomaly.screening.nhs.uk/localscreening. (The key is on the right hand side of the map if you hover your cursor over it) But you should call your midwife and ask if there's anything you're not sure of.

No, there's no other scan. It's just my NHS area doesn't offer the NT scan so I've got to pay for it.

Did your midwife give you the NHS booklet about all the Screening processes? It explains it all.

There's two early tests (done between 11 wks and 13 wks 6 days):
- NT scan
- Blood test
If these two are done together, which they usually are, it is called the Combined Test.

If you can't have the early Combined Test for some reason then you'll be offered the Quad test between 15 and 20 weeks. This is just a blood test, but it's a different blood test to the early one.

Well that's my understanding from the NHS booklet. This might also help answer your questions: https://fetalanomaly.screening.nhs.uk/faq




April2012 said:


> well, because of your age you will automatically be higher risk then if you were 25 and all the blood work came out the same because age does factor in. However, other aspects of the screen and blood work add to the high risk diagnosis. that is why so many women 36, 41, etc...come back as low risk. I came back as low risk (DS 1 in 6000 or something like that), but I am still getting an amnio done.

Blimey, you're braver than me! I've decided I'll only have an amnio if my risk factor comes back at less than 1 in 100. I.e. only if the risk is greater than the possible risk of miscarriage from having the amnio.


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## April2012

LancyLass said:


> April2012 said:
> 
> 
> well, because of your age you will automatically be higher risk then if you were 25 and all the blood work came out the same because age does factor in. However, other aspects of the screen and blood work add to the high risk diagnosis. that is why so many women 36, 41, etc...come back as low risk. I came back as low risk (DS 1 in 6000 or something like that), but I am still getting an amnio done.
> 
> Blimey, you're braver than me! I've decided I'll only have an amnio if my risk factor comes back at less than 1 in 100. I.e. only if the risk is greater than the possible risk of miscarriage from having the amnio.Click to expand...

I know, but for me I feel I need to know the possible genetic and developmental defects (that I can know via the amnio) before giving birth--even though there is a miscarriage risk. it wasn't an easy decision, and I still go back and forth on it.


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## Borboleta

April2012 said:


> LancyLass said:
> 
> 
> 
> 
> 
> April2012 said:
> 
> 
> well, because of your age you will automatically be higher risk then if you were 25 and all the blood work came out the same because age does factor in. However, other aspects of the screen and blood work add to the high risk diagnosis. that is why so many women 36, 41, etc...come back as low risk. I came back as low risk (DS 1 in 6000 or something like that), but I am still getting an amnio done.
> 
> Blimey, you're braver than me! I've decided I'll only have an amnio if my risk factor comes back at less than 1 in 100. I.e. only if the risk is greater than the possible risk of miscarriage from having the amnio.Click to expand...
> 
> I know, but for me I feel I need to know the possible genetic and developmental defects (that I can know via the amnio) before giving birth--even though there is a miscarriage risk. it wasn't an easy decision, and I still
> go back and forth on it.Click to expand...

Hello,
I know exactly how you feel. So after getting my blood test result as 1 out of 94 chances of having a ds baby we decided to do the amnio . It was not bad at all. And we got our results 2 weeks later. Baby is fine:happydance:. It was a long month of being stressed and nervous with the results. 
I know a lady that got a negative test result from the quad screening when she was 28 and she had a down baby. Then she got pregnant 3 other times skipped bloodwork and went right to the amnio and babies were fine. 
Do it if you feel this is the right thing to do. Stressing during the whole pregnancy is not good either for you or for baby.
God bless you and your little one:).


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## LancyLass

Borboleta said:


> Do it if you feel this is the right thing to do. Stressing during the whole pregnancy is not good either for you or for baby.

It's difficult isn't it? I'm as equally scared of miscarrying as I am of something being wrong with the baby. I'm going to stress throughout the pregnancy whatever I do!


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## erikab922

LancyLass, I think it's so weird that you've been told you have to have everything done at the same hospital. I had 5 to choose from (West Yorkshire) and they said I could change my mind at any time and even have different procedures done in different hospitals. 

My PCT offers nuchal scans and blood tests to all expectant mothers and you have to specifically opt out. That's so unfair that you can't get it done, but if I didn't have the option via NHS then I would have had it done privately.

As it turns out I found out today the baby is 1:5 so I'm having amnio on 1 November.


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## bethaturner

I would agree with the rest, you have to demand the test .this i a common assumption for women over 35, but as you can see from the rest of the posts they are at low risk as well.
best of luck honey!!!


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## AngelUK

I still haven't got my results back yet but I am still agonizing about this. April's post about getting the amnio done anyway made me think again too as I feel like her about wanting to know in advance. 
Is it possible to get the amnio done on the NHS even if your numbers come back low risk? My mum really wants me to have the tests done and has found a doctor in Switzerland who has amazing stats for the procedure and mum wants me to come home and have it done there. She thinks the NHS might give me any newbie to do the test! I am sure that cannot be, or can it? I told her I wanted to wait and see my results first but of course they aren't 100%. But since I am having twins I know the risk is higher still so I am seriously starting to have nightmares about this! I am 41.


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## erikab922

AngelUK said:


> She thinks the NHS might give me any newbie to do the test! I am sure that cannot be, or can it? I told her I wanted to wait and see my results first but of course they aren't 100%. But since I am having twins I know the risk is higher still so I am seriously starting to have nightmares about this! I am 41.

I'm having amnio on the NHS and it's the actual OB/GYN consultant who is performing the amnio. If they won't give you amnio on the NHS, there is a very good place in London which will do it privately but of course it's £££

https://www.fetalmedicine.com/fmc/ (click on 'Invasive tests')


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## LancyLass

erikab922 said:


> LancyLass, I think it's so weird that you've been told you have to have everything done at the same hospital. I had 5 to choose from (West Yorkshire) and they said I could change my mind at any time and even have different procedures done in different hospitals.

Maybe it's to do with the hospitals being part of the same hospital trust? I'm just guessing. I know I could probably change to any of the other hospitals within my local hospital trust (there are three) but it wouldn't make any difference in this instance for me because none of them in this trust do the NT scan.



AngelUK said:


> Is it possible to get the amnio done on the NHS even if your numbers come back low risk? My mum really wants me to have the tests done and has found a doctor in Switzerland who has amazing stats for the procedure and mum wants me to come home and have it done there. She thinks the NHS might give me any newbie to do the test!

The NHS screening leaflet says _"If the screening shows that the risk of your baby having Down's syndrome is lower than the recommended national cut-off, we will not offer you a diagnostic test."_ But whether that means they won't give it to you if you still ask, I don't know. You can but ask! I got the impression from my midwife that you can have the amnio if you want as she said in my booking app't "if you want an amnio I can book that in for you" - but that may be because they only offer the Quad test here and as she said I'd come back high risk on that due to age anyway, I'd automatically qualify for the amnio.

I understand where your mum is coming from. I've been thinking the same thing about my local hospital - if they can't even afford to do NT scans, maybe they can't afford to employ someone decent to do the amnios! If it comes to having to make that decision I'm going to ask for the miscarriage stats for the hospital. It says in the leaflet: _"These figures vary slightly from hospital to hospital. If you would like to know the miscarriage rates after CVS or amniocentesis in your hospial, please ask your doctor or midwife."
_


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## LancyLass

P.S. Since not knowing anything when I started this thread, I now feel like I've become an expert on the entire NHS screening process because I've now read so much about it in trying to find the answers to my questions!


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## AngelUK

You are right LancyLass I should just ask for the stats. I just hope that hospital stats and the stats of the doctor performing it are the same thing! I dunno why I thought it was a midwife doing the amnio, erika's post reassured me on that. I know how competent and truly hard working midwives are in this country but they still do not have a medical degree so I would have felt a bit insecure trusting my beans to one. I always thought I knew that becoming a mum would be a scary time but wow I had no idea really!


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## LancyLass

AngelUK said:


> I just hope that hospital stats and the stats of the doctor performing it are the same thing!

Yeah, I thought the same thing!




AngelUK said:


> I always thought I knew that becoming a mum would be a scary time but wow I had no idea really!

Tell me about it! I'm not sure I could face going through this again.


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## Sunshine12

Thanks for the info. Im not confused now! x

Ive decided Im getting an amnio done no matter what the results are so Im not sure if I will just skip the NT scan or not or if they will still do it. Got my first midwife app a week Tuesday so will hopefully find everything out then. x


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## bethaturner

Let us know how it did go doll!!xxx


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## deafgal

I guess your family history (I'm assuming any disabilities) would increase the odd too. Not fun that your age and family history increase the odds. I wonder if the risk would be lower if it wasn't for age and family history.


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## LancyLass

bethaturner said:


> Let us know how it did go doll!!xxx

On reflection I probably won't report back. I had actually made a decision to leave BnB because I found coming across all the bad news too stressful, but I came back on just to ask this question because I was so concerned about it.

I found it very upsetting to be reading a thread to then find it ended it the original poster saying "sorry to report I miscarried" or "it was a missed miscarriage in the end."

I'd hate to put another reader in that position and as I haven't had my 12 week scan there's still the potential for early bad news. So I'm going to say now that I won't report back, just in case (unless I get more misleading or confusing information of course and need to ask you all for your excellent advice again!) Hope you understand.


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## truly_blessed

I've only read your first post hun but it's a load of bollox :growlmad:

That was what I thought and I was very specifically told that age alone is not necessarily going to make anyone high risk. 

They proved me wrong and themselves right when my risk came back as 1:6300 and I'm 41.


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## Wantapink1

I had my DS2 at 36 and wasn't told that I'd auromatically be high risk - I've found being an older mum they scare monger you a bit x


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## beach9920

m


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## babytoes

Hi... I'm 35, 36 next month. I had my NT scan and my blood tests and I was given a low risk result with a 1:9100 chance.


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## AngelUK

Excellent result babytoes, congrats :D


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## mommylam

I'm 37 ....will be 38 in a couple of months and my test for Down Syndrome came back 1/465 and 1/10,000 for overall chromosome issues which is a higher chance than in my last pregnancy but still considered low risk! I'm not sure why your doctor told you that......I think it was unprofessional and very uncalled for!!!!


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## Wantapink1

I am 38 nearly 39 and had the NT scan and my result never automatically came back high risk - it was 1-3000 x


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## sadie

LancyLass said:


> Hi
> 
> Just had my first appointment with the midwife and she said there's no point having the blood test to screen for DS because as I'm over 36 it'll automatically come back as high risk. It's the first time I'd heard that. Has everyone else been told that too?
> 
> Surely if they're looking at the chemicals in the blood they can still give you a greater or lesser risk within your age category?
> 
> Just wondered what other over-36s experience of the screening process has been?


Are you referring to the test that goes withh the NT scan??? I was told the sam thing today by my doctor! Meanwhile my NT measurement was great. He suggested I not bother with the 2nd stage of bloods and go straight to an amnio in 4 weeks..... Im investigating the MaterniT21 blood test....


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## sadie

Junebug_CJ said:


> Hun I do prenatal diagnosis and counseling for a living and this is absolutely ludicrous! You bloods and NT will be used to readjust your age-related risk (either decrease it, increase it or have it stay the same). If it is increased you can then opt for additional testing such as amniocentesis to get a definite answer. I'm so sorry you're dealing with a doc who obviously has a very biased view and is trying to impose his/her feelings on the matter onto their patients! :hugs: I would insist on having it done if it is something you want, or request a second opinion!


Hi junebug! I was hoping to find you on here for an opinion.

My doctor today (1st visit) told me that my NT measurement and bloods at my age (42) arent really worth anything because I am automatically high risk and he suggested I go straight to amnio in 4 weeks....
Wouldnt the 2nd stage of bloods, plus my calculations tell me enough? And then the continuous U/S that monitor development??

Also, are you familiar with that new blood test we have here, MaterniT21 ?

I just dont feel good about the amnio, but then again I worry about everything!

How are you doing? Bump getting a little bigger? :)


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## Helenita

sadie said:


> Junebug_CJ said:
> 
> 
> Hun I do prenatal diagnosis and counseling for a living and this is absolutely ludicrous! You bloods and NT will be used to readjust your age-related risk (either decrease it, increase it or have it stay the same). If it is increased you can then opt for additional testing such as amniocentesis to get a definite answer. I'm so sorry you're dealing with a doc who obviously has a very biased view and is trying to impose his/her feelings on the matter onto their patients! :hugs: I would insist on having it done if it is something you want, or request a second opinion!
> 
> 
> Hi junebug! I was hoping to find you on here for an opinion.
> 
> My doctor today (1st visit) told me that my NT measurement and bloods at my age (42) arent really worth anything because I am automatically high risk and he suggested I go straight to amnio in 4 weeks....
> Wouldnt the 2nd stage of bloods, plus my calculations tell me enough? And then the continuous U/S that monitor development??
> 
> Also, are you familiar with that new blood test we have here, MaterniT21 ?
> 
> I just dont feel good about the amnio, but then again I worry about everything!
> 
> How are you doing? Bump getting a little bigger? :)Click to expand...

I just replied to you on the other thread regarding MaterniT21, but if you read my posts in the "Screen Positive for Down" thread, you will see that your doctor might be right, because I was in a similar situation (I am 41, 42 at delivery) and doing the testing caused me a lot of worry untill I got the results back from MaterniT21. You start with the low risk to begin with, around 1:34, so even if your bloods are OK, your risk will improve 4-fold, but it will only get to as high as 1:136 or so, which will keep you wondering still. I did not realize it at the time, so I went for the combined screening only to be disappointed since it went down 4-fold to 1:9, just because the blood markers were slightly off in the wrong direction. In the end I am glad I did it, because I would have not found out about MaterniT21 otherwise. Plus I had a chance to see the U/S findings that kept me reassured while waiting for the results, because the U/S is more reliable than the combined screening, which I also address in my other post. In your case, if you want to avoid the amnio, go straight for MaterniT21, if you can afford it, - it is as reliable as the amnio, or even more so, can be done as early as 10 weeks and is non-invasive.


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## sadie

Hi Helenita...
Where in the usa are you? It isnt yet offered in NY, and I am going to see if it is available in NJ or even CT and if insurance will cover it. i can handle the $200, but not $2,000....

Thanks!


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## Helenita

sadie said:


> Hi Helenita...
> Where in the usa are you? It isnt yet offered in NY, and I am going to see if it is available in NJ or even CT and if insurance will cover it. i can handle the $200, but not $2,000....
> 
> Thanks!

Hi Sadie, 
I am currently in Tucson, AZ, but had to go to Phoenix, AZ, to do the test. I was told it is only available in 40 labs around the US, but they did not tell me which ones. :-( If I find out, I will let you know. I am surprised that they don't have it in NY, unless you mean the state and not the NYC. It may be available in NYC and the cities of that size. (i.e. Phoenix, LA, etc.)


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## sadie

NYS has not yet approved it tho the company has applied for it to be in NY.... I wonder if insurance would pay for it, if I go to another state....

In any case, do you know what your NT measurement was? Mine was 1.80 mm which was great njust waiting on the bloods, but doc made it seem useless to even look at the data.


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## Helenita

sadie said:


> NYS has not yet approved it tho the company has applied for it to be in NY.... I wonder if insurance would pay for it, if I go to another state....
> 
> In any case, do you know what your NT measurement was? Mine was 1.80 mm which was great njust waiting on the bloods, but doc made it seem useless to even look at the data.

*Like I said before, your doctor might be right. I have come to this conclusion after finding some information on the net that I posted on another thread and I am quoting it again here to clarify what I mean.*

As I was researching the Internet on the subject of the 1st trimester screening, I have come across the forum discussing the same issue and read the answer of a pregnant woman who was also a *Statistician*. I am posting part of her answer (most relevant) below. She was replying to another lady who was worried about getting the high risk for the Down syndrome (1:47) based on her combined NT/blood testing. I found her explanation interesting and perhaps it will also help any of you understand things about prenatal screening. 

"...I'm answering you as both, as a statistician and as a mother. Statistician's voice: The way the ''nuchal test'' is typically conducted in medical practices in the US these days is an unfortunate marriage between a relatively reliable and a very unprecise indicator. I can not see how these two very different things can, even half-resonably, be combined into one likelyhood: 
(A) The measurement of the nucal fold taken during an ultrasound. If the measurement is above a certain threshold (2.5 if I remember well), this is a semi-quantitative (but relatively reliable) indicator for Down syndrome. 

(B) A measurement of the concentration of a hormones released in pregnancy, and some other data. It has been observed that the concentrations of this hormon develop slightly differently when the fetus has Down syndrome (or other chromosomal problems, or spina bifida). A deviation from the typical curve can, but does not have to, be caused by Down syndrome or one of the other diseases. Unfortunately, the evaluation of the results is extremly sensitive to the estimated time of conception. The latter is estimated by the date of last period, or by ultrasound. Both methods are not precise enough to ensure the interpretation is even half reasonable. 

I would encourage doctors to report their findings separately. Every woman who chooses to do this test should be reported the measurement from (A). She could then choose by herself if she wants to put any confidence in part (B) or not. In particular, if she already has reasons to belief that the date of conception (the doctors will talk about ''due date'' for the birth, actually) was well estimated. For example, if her cycle lengths are not the ''normal'' 28 days, if she's not sure about her date of last period, or if the dates based on the day of last period and the date based on ultrasound differ. I actually talked to the statistician in charge of the Californian program for screening for genetical diseases. He said that something like three days off the correct date of conception can completely falsify the results. Doctors and their assistents usually do not even know this, and go ahead to do a useless computation. The results they report to the women are probabilities of a precision that is misleading. I would like to see the standard errors for their computations. It would not be surprising to see: ''the probability your fetus has Down syndrome is, most likely, some number between 1/10 and 1/300''. What are you making out of this information?..."

*And just to prove the point above and to answer your question, my NT measurements were 2.3 and 1.8 at 12w and 13w6d respectively, my combined risk came back as 1:9, but the baby is normal, as confirmed by MaterniT21. So, as you can see the U/S is a better predictor of the reality, but for those who need to know for sure, the diagnostic test of some sort will still be necessary.*


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## Helenita

I also found this site that does a good job explaining how they calculate the risk of Down syndrome: 

https://www.wolfson.qmul.ac.uk/epm/screening/calcrisk.html

However, yet again, by looking at the graphs there, you can see that the values of the *blood markers* for a healthy baby and a baby with Down syndrome *overlap so much *that even a "bad" MoM value can still fall within a normal range, making it a very unreliable indicator.


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## sadie

Thanks for the info.

I am going to try t o find where the blood test is offered and if insurance will cover me if i go out of state for it.


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## Helenita

I don't think it matters where you do the test, because the billing is done through the headquarters in San Diego and since they only offer it in limited places,I would imagine people often will need to travel out of state to do the test. Also, with or without insurance you will only pay $235 from what I understand, but I may be wrong, or maybe if insurance denies the payment, you will still only pay $235, so if you have insurance that is a PPO plan, you should not worry.


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## sadie

It is offered in Nj and the only way to have it done is for a NJ doctor to prescribe it, so I am in the process of searching for doc in NJ that will offer me a consult so that they can provide me with the blood test order..... So ridiculous that a NY doc cant order it for me.


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