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Inaccurate high risk NT scan -any similar experiences?

(49 Posts)
Hovis1980 Thu 28-Mar-13 09:16:39

I recently had the combined test on the NHS and was given a 1 in 40 high risk rate of Downs. My husband and I were devastated. We talked our options through with the specialist mid wife. She explained that we could go for a CVS or amnio, but both procedures had a risk of miscarriage. We asked if we could be re-scanned by a Consultant (our sonographer had struggled to get a measurement) and we were told this wasn't an option.

In the end we decided to pay for the combined test to be re-done at the Fetal Medicine Centre in London by the Prof who pioneered the test originally & was recommended to us as the leading UK expert (cost of £180). We are so thankful we did this. Our nuchal measurement was checked and rechecked multiple times (our NHS sonographer took only 1 measurement after struggling to get a measurement at all) and the most they got was 2.2 compared to the NHS 2.9. They also looked at multiple soft markers including the nasal bone, flow of the heart, flow of the liver etc... and lowered our risk to 1 in 9072!

Both my husband and I are now feeling quite cross that the NHS would have proceeded with CVS or amnio without re-checking the nuchal.. We recognise that nuchal measurements can flux but 2.9 to 2.2 strongly points to a human error. If we hadn't gone to the Fetal Medicine Unit then we could have proceeded with an unnecessary invasive procedure putting our pregnancy at risk.

We're thinking about challenging our hospital's decision not to offer a re-scan as we'd hate other parents to go through an unnecessary CVS/amnio. We know the NHS can't offer the more sophisticated soft marker assessment but we do think they should offer to re-check the nuchal measurement. Before we raise our concerns I just wanted to check if anyone has had a similar experience or has any comment?

That must gave been so hard. It's strange that the consultant keeps speaking about downs syndrome because all the stories I've found with high fluid levels like ours have turned out to be Turner's.

DinoSnores Thu 04-Apr-13 22:02:54

Sorry to confuse you, mother, had a namechange since posting yesterday, but wanted to answer your question.

DinoSnores Thu 04-Apr-13 22:01:05

I'm afraid I don't have a positive story either. From the second scan, when we saw the fetal medicine consultant, it was clear that DD had developed hydrops and was going to die. We declined invasive testing and termination and I carried her until she died in utero at 18 weeks. I then had an induction of labour. While the outcome was sad, I can also say that in some senses it was a lovely experience as well, as much you can describe it as lovely! We were so, so well cared for by the fetal medicine team and then the midwives on delivery unit. At post-mortem, they discovered she had mosaic Turner's syndrome. Since then, we've had another daughter and been again very well looked after by fetal medicine.

I'm not feeling too bad claudius.I'm thinking more and more that I want to continue with the pregnancy.
Bartlet What was the outcome for you with that my measurement? I haven't been able to find any positive stories online with a measurement as high as mine.

iclaudius Wed 03-Apr-13 16:52:24

I spoke to ARC and Barts lab both were great

BartletForTeamGB Wed 03-Apr-13 16:31:12

mother, I am sorry to read that. I hope everything works out okay. With my DD1, her NT was 11.4mm so I can imagine some of what is going through your head right now.

Hovis1980 Wed 03-Apr-13 15:58:28

Worley - our MuM score for the inital nuchal was 1.95 (nearly double the average) where as our scores for the bloods were lower. I still plan to have the Anomaly scan & then if concerns were raised I'd again seek a 2nd opinion from the Fetal Medicine Centre before having an invasive test. It isn't about liking or not liking the result. For me it's about being as informed as possible before taking a decision to have an invasive test. As IClaudius shared all of this is such a personal decision. Different people find re-assurance of their decisions in different ways. I'm just really grateful for the mums on mumsnet who gave me the space to work through the feelings I had after my tests were over without judgement.

nellyjelly Wed 03-Apr-13 15:00:36

Phone ARC. Antenatal results and choices. They are brilliant. Also post on the the antenatal tests board on MN.

iclaudius Wed 03-Apr-13 12:33:31

I might be tempted to have the cvs sooner mother but that is PURELY personal - I am a pessimist and loud worrier so tend to need to know KNOW

When WE were worried dp was very very calm and just said 'we'll cope whatever' which was good for me ( we already have children too like you) dp didn't want any testing .

I had an NHS scan after the private one which was MUCH better and clearer and a consultant or two advising - I found that really helpful but she still advised me CVS that day

How are you feeling this morning xxxx

iclaudius I have another scan next week so I don't know if I should gave the CVS then instead if waiting for the amnio. I 'm in complete turmoil and don't know what to do for the best.
10mm of fluid is a lot compared to all the stories I have read so I'm beginning to lose hope.

iclaudius Tue 02-Apr-13 23:30:53

worley - i dont think harmony test says 2% on it? i'm pretty sure mush less

Mother of Nations - keep talking to us - ask anything. I hope you are managing to rest and look after yourslef during this stressful time

worley Tue 02-Apr-13 18:14:56

NHS shouldn't be noting down soft markers. especially not nasal bones. not every type of person has a nasal bone. so wether there's one present or not is not a sign of downs which is why is been removed from assessment.
I'm glad bartlet talked sense earlier on with regard to the margin of error. and that the results changed with the blood levels; the nuchal measuring was within normal range both times so why did you think it was sonography error and not pathology labs? and because you didn't like the result. will you be having your anomaly scan? as the results may not be to your liking then either?
retinal screening, breast screening, cervical screening, combined screening, anomaly scans, all these tests the NHS provide for free. nothing is 100% but is it better to have the test than not all?
even the harmony test has a 2% chance of error. 2 in 100 results will be wrong.

Well I had another scan today. There is 10mm of fluid around the baby. I think I read that the upper normal level is 3.5 so we've decided to book in for an amniocentesis on the 30th. They would have done the CVS today but the placenta is quite fat back and I wasn't sure I wanted to have the extra risk of miscarriage.
The consultant said if I change my mind and find the wait for the amnio too long just to call and they'll get me in for the CVS.Thankyou to everyone for the support and virtual hugs.

nellyjelly Tue 02-Apr-13 15:17:03

Trouble is there are conditions and complications no test can rule out. In some ways, the more you look the more you find.

I did no testing with DC1 and had private nuchal with 2nd. Due to my age the consultant put me straight in for an amnio. My hospital didn't do nuchals. I got the private one to help me decide if I needed an amnio or not. Got 1 in 250 which was ok with so didn't do the amnio.

It is all very stressful though.

fatandlumpy Tue 02-Apr-13 07:37:47

Mother I just wanted to give you a big hug

iclaudius Tue 02-Apr-13 00:47:36

I thought the NHS may note soft markers but not include them in their calculations iykwim

Our NHS scan definitely noted soft markers, I remember it saying "nasal bone present".

Hovis1980 Mon 01-Apr-13 23:33:54

MotherOfNations - I really feel for you. When we got our first results my husband and I had so many heart renching chats. My husband said if it was Downs he would rather we terminated, but he'd support me if I wanted to keep it. I felt that if it was Downs I couldn't go through with a termination but was worried about the impact of that decision on my husband. Whatever you decide to do with testing and the results of that testing will be the right decision for you. My heart goes out to you having to discuss such difficult questions.

IClaudius - thanks for sharing your experience. Ps good profile name, I loved that series.

NellyJelly - the more I've read up on this the more I've come to the same conclusion. It's amazing what a roller coaster of emotion you go through with these tests/results. I began feeling really upset by the inital result, then relieved after the 2nd results but angry/blaming the NHS for the 1st result & now I feel like I've come out the other side & can reflect a bit more objectively based on what I've learnt since then. All in all it's been a huge learning curve for my first pregnancy... and I'm sure there's a lot more to come!

nellyjelly Mon 01-Apr-13 16:26:37

The NHS just used to give a high risk rating not the percentages. I think the numbers 1 in x etc raise anxiety, especially where stats are not fully understood.

NHS screens look at bloods and nuchal measurement alone. Private tests based on the FMC research take into account all the other soft markers. Hence the risk reductio. The actual measurement wasn't that out. It was the soft markers that probably brought your risk factors down.

iclaudius Mon 01-Apr-13 16:16:43

Hovis I opted for harmony after a dodgy private blood result at nuchal scan - we were offered cvs by NHS but our big teaching hospital published miscarriage figures looked high

Motherofnations what a difficult time for you all x My husband and I had a few weeks of high stress over tests and like you felt we would not terminate for Down syndrome only incompatible with life things. I shed a lot of tears but actually it helped - clarifying that Down syndrome is not the end of the world

We paid and had the harmony pack sent to us on the north

I'm in Glasgow unfortunately but I've heard that the Southern General here has low miscarriage rates. It's just so difficult.
My first reaction was that we could cope with a downs syndrome baby but now we've had time to think we're not sure we could. It seems that everywhere I look this week there are cute little children with downs which isn't helping me think logically.

Hovis1980 Mon 01-Apr-13 12:29:14

MotherOfNations - my thoughts are with you and your partner. I know when we were told our first result we were in total shock. If you decide you want a 2nd opinion (and can access London) then I'd thoroughly recommend the Fetal Medicine Centre whose Prof is the UK's leading expert in this field. They can do further non-invasive testing & have lower than average miscarriage rates for invasive testing. It's such a personal choice, and whatever you and you partner decide to do I wish you all the best.

I'm actually reassured that you had a false positive as I had ny 12 week scan on Thursday and though I'd opted out if downs screening they told me there is a lot of fluid that runs from my baby!s head right down it's spine.
I've been told that in all likelihood my baby has downs or possibly another condition incompatible with life.
I am to have another scan tomorrow but I'm not sure why. What can that tell then when they seemed so certain? We are in complete turmoil. This is my 5th baby but my partners 1st and we were both so excited.

BartletForTeamGB Sat 30-Mar-13 21:51:23

I know. The problems aren't really recognised by women in general. I'd have to think long & hard like your mum before having it as I'm not sure the benefits do outweigh the risks.

brettgirl2 Sat 30-Mar-13 11:31:45

Bartlett there has been quite a lot of discussion about breast screening as well. Totally off topic but that also has arguably harmful net effect from women having unnecessary intervention. My mother thought very long and hard about whether or not to have it.

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