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So confused over nuchal and blood test results )-:

19 replies

mosschops30 · 02/05/2009 12:24

I paid to have a private nuchal as NHS dont offer in my area.

The scan was good and fluid measured 2.3mm (so within the 3m limit).
My background risk was calculated as 1:353 due to age (34), my recalculated risk from the scan was adjusted to 1:613 which was great.
have now phoned for blood results this morning and risk is now 1:301 and their borderline for offering amnio is 1:300 so am borderline.

Am trying not to be hysterical but am I right to be worried

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corblimeymadam · 02/05/2009 12:29

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marj1 · 02/05/2009 12:41

My risk after scan and bloods was 1:170, I needed to know for sure so had the amnio. Sadly it came back that my little boy had downs.

I suppose your first decision is if the baby had a problem would you terminate? If you wouldn't I wouldn't have the amnio. Difficult decision though I know from experience.

Good luck, let us know how you get on x

mosschops30 · 02/05/2009 13:05

thank you for replying, am in tears at the moment after speaking with doctor so will come back to thread later

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sarah293 · 02/05/2009 13:14

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lljkk · 02/05/2009 13:15

Sorry to hear this, mosschops. I think we're programmed to worry when pregnant which doesn't actually help to cope -- not that parenthood is much less full of things to worry about, lol.

Honestly I think you shouldn't get into a tizz, the worst risk stat you've got suggested about a 0.3% risk of a serious chromosone problem. Combined (by any sensible method) with the other test results, your real risk is more like 0.25% or lower. Why get upset over 1/301 when ~1/400 was tolerable? Given all the uncertainties that pregnancy and life can throw at us, your blood test result is not too bad.

The real question is whether to go for an amnio to give yourself further choices or just peace of mind, is that dilemna what's most stressing you out?

linspins · 02/05/2009 17:59

Hi Mosschops.
My nuchal was 2.8, and was only just considered on the high end of normal. Yours is well within what's normal. Your results haven't changed that much when the bloods are taken in to consideration. I think that 1:301 is pretty good odds, and I'd like to say if it were me I wouldn't worry. (But I know how stressful pregnancy is..! )My odds were 1:80, so we did go for a CVS. But here, you aren't offered amnio or CVS with odds over 1:250, so you would be considered ok!
As other posters have said, it all depends on what you think you might do if there were problems.
I do hope things go well for you, and that you have managed to have a reasonable day despite the worrying.
Keep us posted about how you are getting on or come back here for more stressing, moaning or questions if you need to!
best wishes, Lins xx

FabulousBakerGirl · 02/05/2009 18:01

Stupid question but what are you worried about?

Having an amnio and losing the baby or having it and finding out the baby has DS?

linspins · 02/05/2009 18:50

FabulousBakergirl, - don't you think it is possible to be worried about both of those things? Having an amnio is a stressful and worrying thing. Equally, it is possible to be worried that the baby has DS, and still be fully supportive of keeping it.
Mosschops, whatever you decide to do their are people who will support you. But I think if you can, -don't worry! xx

FabulousBakerGirl · 02/05/2009 19:09

linspins - I was merely trying to help mosschops30 get things straight in her head.

samandbeansmum · 02/05/2009 19:46

It's hard not to worry in pregnancy so I don't blame you for being concerned but to be honest your odds sound very good. I know there is a risk of m/c with amnio but I was told that a 1% is an out of date statistic and it is not as high as that. If you need to know for peace of mind or to be prepared or to make choices, then you maybe should have have the amnio.
I start at a 1:100 risk before any screening because my first baby had a chromosomal disorder (Trisomy 13), but i like to think that those odds are good as there is a 99% chance things will be fine.
I had CVS done last time after being 1:2 risk but wouldn't have it again if my risk stays at 1:100. My nuchal was 6mm though so we knew things were not right.
Keep us posted with how you get on, I hope things go well for you.

mosschops30 · 02/05/2009 20:53

Thank you all so much, Ive had the worst week in the world, I worried myself to death over HIV testing after having 2 needlestick injuries and an eye splash, thankfully they were ok, then my dad attempted suicide on saturday and now this, this morning I just sat and cried and thought 'what else can happen'
Now later on in the day I feel a bit more like me and a bit 'yeah bring it on then, because whatever it is I can handle it'

I spoke with with the consultant who said the same as linspins that the country is moving towards 1:250 being the marker for high risk rather than 300.
He also said he wouldnt advise an amnio as the risk to the baby was far greater than the risk of anything being wrong.
He did offer a marker scan at about 18 weeks (another £160, is he just trying it on ), he said that babies with DS have other markers which can be identified by scan at that time and would give me a clearer indicator. However he also said that the decision to terminate would be much harder at a later stage.

Right now I feel like I dont want anymore tests and what will be will be. Even if it came back high risk Im not sure I could terminate, for dh however its a done deal, if its not perfect then you dont keep it. I know thats a shitty POV but its just how he is. I am more open to thinking that with all the testing in the world you can still end up with problems, indeed the children we have could end up being drug taking, wife battering, old lading beating hell raisers and give us a life of misery (dh's words for having a baby with an abnormality).

Does anyone know what they test for in the blood sampling and why my scan was so good and took my risk down to 1:600 and then up to 1:300 from the blood?

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izyboy · 02/05/2009 21:00

That sound like a sensible POV Moss. Did the consultant say why the bloods might have made the difference? Are they less reliable?

mosschops30 · 02/05/2009 21:16

No i dont think I asked. He was so positive after the scan joking with dh and saying 'so your wife is really like a woman of 30 ha ha ha'
I just dont understand the change from the bloods.
I will have to phone him again this week and discuss the marker scan, although dh seems to have come round to the idea that i dont want the scan or any other bloody test now, it just seems to create more problems

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izyboy · 02/05/2009 22:01

its very difficult Moss. I really feel for you.

linspins · 02/05/2009 22:10

Mosschops,
god what an awful week you've had.
Just a thought, but could you not have another scan at 18 weeks on the NHS? Now that you have had a private scan, and with the odds you've been given (pretty good) if you really need an earlier scan I would have thought you could get one free? Might be worth asking your GP or midwife.
But if you feel enough is enough, then I hope your DH respects that.
A decision to terminate is an awful, heartbreaking and life changing decision at any stage, 12 weeks or 20 weeks. But I guess what the consultant might have meant is that you will have bonded with the baby even more by then.

sarah293 · 03/05/2009 08:57

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mosschops30 · 03/05/2009 18:16

thanks for the replies, dh seems to think today that the odds are good and there is no need to talk any further about it.
I think I just need to cry about everything really at the moment, and maybe I am over reacting.

The scan they would offer me at the local NHS hospital is apparently not as detailed as the private one (I guess he knows, he is the consultant in fetal medicine for both the NHS hosp and private one).

I will speak to him again this week and try and get him to explain about the blood tests and why the results were so different, and also the helpline that belgianbun recommended which looks really good, may also be able to offer me some help

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linspins · 03/05/2009 22:43

Mosschops, I really recommend ARC that belgianbun wrote about. They are great at explaining stuff and giving you a place to air your feelings and thoughts (and letting you have a good cry if you need it.) They are supportive of whatever decisions you end up making. ARC has been a real lifeline for me in the past.
Make your consultant tell you everything you want to know (after all, you are paying for it!)
Hope you have a better week. Keep us posted.
xx

elkiedee · 04/05/2009 21:54

Mosschops, sorry you've had such a vile week.

I had a worrying result from the combined test with this pregnancy - a lot of it was age related but according to the consultant who did the CVS test I decided to opt for, it was the bloods that bumped up the risk. The test looks at levels of two hormones in the blood.

The CVS came back clear. I honestly don't know what I would have done in the end if the result had been positive. I think my mum's opinion would have been very hard to deal with, as she would be far more definite against continuing than dp and I felt when discussing it. Of course he/she would have been our baby not hers, but I would have found that a very difficult argument to be having at such a time, as I would be so angry at having someone else tell me what I should do. I was surprised and shocked by how upset that alone made me. At the same time, I honestly don't know what decision we might have made (dp and I, that is).

1:300 wouldn't be considered high risk by my hospital - they contact anyone with 1:250 or worse - mine was 1:120 and I was shocked that it had changed so much in less than 2 years.

I hope you can get the detailed information/advice you need to help you decide whether or not to go for screening etc.

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