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Original poster

Higher reading for Nuchal translucency scan - feeling panicked!

226 replies

linspins · 09/02/2009 18:52

Hi all, Just been for our 12 week scan today and had the nuchal scan to test for Downs. The reading was 2.8mm. They said this was high, but not high enough to be classed as high risk without doing a blood test. I had a blood test afterwards, but the results won't be in til Friday. I am just really worried now that there is something wrong with the baby. I'm 36, so no spring chicken, and had a heartbreaking time with my first pg, after severe abnormalities were diagnosed at the 20 wk scan and we had a termination. I have since had a healthy lovely little girl, but I'm scared again. Has anyone else had high nuchal reading, was it ok?

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mogwai · 09/02/2009 19:08

Hi Linspins

Like you, I'm 36. This is my second pregnancy and I have a healthy daughter aged 3.5.

My nuchal fold reading was 2.7mm which is at the higher end of normal. My bloods, however, increased my risk to 1:168 for Downs Syndrome.

I'd already had the bllods taken so got the reading and the risk straight after the NT test. We had an amnio at the end of December. The baby is fine and I'm now 22 weeks.

Hope this is the sort of answer you need to hear - I totally understand what you are feeling but perhaps the bloods will put your mind at rest.

Original poster
linspins · 09/02/2009 19:37

Thanks for your message Mogwai... it's all such a horrid wait. And then if the bloods show an increased risk, what to do then. Were you advised to have the amnio? Would you have had it if the risk was, say, 1:180? or 1:200? I don't know where to draw the line...
SO glad your baby is fine. May it all go smoothly for you now!

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angel1976 · 09/02/2009 20:04

Hi linspins,

I just wanted to share my happy story as well. My baby's NT reading varied from 2.6-3.0mm and my risk was 1:63 as my NT scan was done fairly early on (11+ weeks) so the baby was little in comparison. I had a CVS and it came back normal. I now have a very healthy and cheeky DS who is turning 1 in 2 weeks!

If your risk is high (under 1:250), they are likely to offer you a CVS or amnio. We chose the CVS as we could not wait that long for an amnio (a CVS is performed usually between weeks 11-13+6 and it takes cells from the chronic villis of the placenta) but it does have high risk of miscarriage compared to the amnio. Good luck to you!

Ax

angel1976 · 09/02/2009 20:10

I mean higher risk of miscarriage than the amnio though some think it's because it's done earlier than an amnio so some women would have miscarried naturally anyway. It's a horrible time, try not to worry till you get your blood test results.

PigeonPair · 09/02/2009 21:11

No experience of this personally but just wanted to wish you luck with the results. It mmust seem like a very long wait.

littleM · 12/02/2009 13:16

Hi

Hope all goes well with your blood test. I too am 36 and my nuchal fold measurement gave me odds of 1:10 for Downs - had CVS and it came back normal. Good Luch

Original poster
linspins · 12/02/2009 18:13

Update: got the results back today...bad news, high risk for downs. 1:80 risk.
We've now got a CVS booked for tuesday up at Kings in London.
Can't believe we have to go there again, that;s where we went in 2004 when we lost our first little girl.
I know the odds are still 79 chances that it might be ok, but I am terrified it won't and I've got such a bad gut feeling about this.
:.-(

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ladyhelen2 · 12/02/2009 20:25

We had a 2.9mm nuchal measurement in October which gave us odds of 1:29 for downs. This was 2 days before my 38th birthday. We opted for CVS and it came back all clear for downs within 24 hours of the test and all clear for everything else later on. It was a horrible few days.
Good luck. Just remember that your risk translates into a really good percentage that all will be fine. My maths is pretty shocking but it must be in the high 90% range! Get someone to work it out for you and it will seem better than 1 in 80.

babyblue3 · 12/02/2009 23:37

Hi Ladies... just lurking and looking for some positive reassurances. I am 36 and just received bloods back from my testing, and they came up with 1:36 chance for Downs. I am a mess! See the doc tomorrow for results from nuchal, and to discuss options.

Original poster
linspins · 13/02/2009 08:12

Hi Babyblue3, I know exactly what you are going through. If your blood test and nuchal haven't been combined to give your odds yet then they may change?
And as others have tried to reassure me, the odds are only numbers, you still have two thirds chance all will be well.
But then I know that no amount of reassurance helps too!
Do you think you'll have the CVS?
Good luck.
I'm so NOT looking forward to mine.

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Nekabu · 13/02/2009 10:29

babyblue3, are you anywhere near London? The Fetal Medical (or Medicine, can't remember which) Centre in Harley St has been very highly recommended by MNers who have had scary results from their NHS docs. They do a lot more extensive testing and the odds can be altered quite dramatically and if they don't, they are very experienced with CVS.

Original poster
linspins · 13/02/2009 12:02

Nekabu, have you heard anything about the 'Harris Birthright Centre" at Kings Hosp?
Going there tues for CVS.....

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crumpet · 13/02/2009 12:25

The Harris trust at Kings is I think the best in the country - we had Prof Nikolaides (you can google hiM) do both my CVS tests - one at the Harris, whihc he set up (think my risk was 1 in 82) and for my second pregnancy at his private clinic (Fetal medical Centre) (risk then was 1 in 560).

Doctors come from all over the world to have training at the Harris - it is a real centre of excellence. We were asked if we minded havign trainees in the room with us - it is not a problem to refuse, but we were happy to have them in as the training is so important. There were quite a lot of people in the room and he gave one poor chap a really hard time - made him choose where he'd do my CVS and spent a long time teachign how to find the right spot - but the actual CVS was done by Nikolaides. Rather tearfully I asked him afterwards when I'd know about the risk of miscarriage and he just said "is no problem. Was good" .

Good luck, it is a worrying time. Oh, and both times my results came back clear.

crumpet · 13/02/2009 12:26

sorry - second time my risk was one in 60, not 560

Sweetie34 · 13/02/2009 15:07

Hi Linspin and Babyblue3,

My risk based upon bloods and Nuchal Scan (1.7mm) came back as 1:15. Extremely high odds and very shocking. We have decided against any furtehr testing. We have an anomoly scan booked for next week so will know more then.

We were number with shock when we found out 8 weeks ago so I know how you feel.

Anything that puts your mind at rest or gives you further information should be pursued. It's a worrying time and I wish you both lots and lots of luck.

Sweetie34 · 13/02/2009 15:08

Meant to be numb with shock.

I am 37 now and I was still expected better odds!

WomanInAnAttic · 13/02/2009 15:16

With DS3 my odds came back as 1:7. It was not my nuchal fold measurement but my PAPP-A measurement in my blood that gave us such tricky odds.

Everything was fine.

sleepwhenidie · 13/02/2009 15:30

The Fetal Medicine Centre on Harley St is fantastic, it is Prof Nicolaides', mentioned by Crumpet, clinic. He is probably the most respected doctor in fetal medicine in the UK and devised the nuchal test. But you should have the same standard at King's as that is where he is based for most of his work (NHS, the clinic charges for private treatment but is a charity).

I went through this whole thing with both my DC's, had CVS with second one, both turned out to be fine but my thoughts are with you, its a horrible time...but try and focus on the fact the odds are hugely in your favour. Good luck, let us know how you get on.

babyblue3 · 13/02/2009 17:03

Well... I went to see my doc this morning, and the 1 in 35 odds came mostly from the bloodwork. My nuchal measurement was fine at 2.4mm (according to my doc... I am not sure what 'normal' is). Everything in my blood came back very low. So now we have been referred to a genetics counsellor and will need to do an amnio. We were not offered the CVS... is that done earlier on? I am 17 weeks. Has anyone had an amnio done? What is it like? I am still very worried, but you ladies have given me a lot of hope... thank you!

babyblue3 · 13/02/2009 17:05

Oh... and I am from Canada... but was reassured that the hospital I will be going to is very competatant, etc..

Original poster
linspins · 13/02/2009 18:04

Babyblue, I had an amnio the first time round, and it's a relatively quick procedure. It is scary, but you just have to not look, and think nice things for a bit. Amnio's are offered after about 16 weeks, and the odds of a miscarriage are quoted as lower than for a CVS, although the odds are skewed because more people would naturally miscarry at say 10-12 weeks, and its rarer at 17 weeks.
We are having a CVS because I am only 12 wks and because I just can't wait 4 weeks more to know for sure.
Fingers crossed for both of us. xxxxx
Lins xx

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Original poster
linspins · 13/02/2009 18:05

Sweetie 34, good luck with your anomaly scan. I really hope they can tell you all you need to know to give you an all clear. xxxx

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mogwai · 13/02/2009 19:32

Hi Lins

If it makes you feel any better, I also had a "bad feeling" about the pregnancy from the beginning.

I became pregnant ridiculously easily after taking a year to conceive my first child.

I was also so shocked about the pregnancy that I cried for a week, which seemed ungrateful in retrospect.

It was all in my mind, of course.

Original poster
linspins · 18/02/2009 20:16

Update:
We went for the CVS yesterday at Kings hosp, and it was just as horrid as I had imagined (and hurt more too!). They did a detailed heart scan before the CVS and told us the baby's heart has possible problems. I was so distraught, and still am. I think the sonographer said that the heart problems didn't look like the type associated with Downs etc, but in the state I was in I might be imagining that. So goodness knows what's going on. Obviously at 13 weeks the baby is only 7 cm so the heart is weeny - we'll have to wait til at least 16 weeks for a detailed cardio scan. We've got to wait 4 days now for the initial results and I'm just so tired. I have been feeling really ill from the start of this pregnancy and I'm feeling very low. I just can't believe this is happening again to us, we've already said goodbye to one baby, back in 2004. My 2 yr old toddler is the only thing keeping me going.

Lins xx

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miffin · 18/02/2009 20:33

Oh Lins, what a horrible time for you. Try not to feel to distraught - it's still early days and lots of chance that things will turn out well. Sending lots of good wishes for a positive outcome your way ....