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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?

lljkk Thu 28-Mar-13 09:31:42

How many dates elapsed between the NHS & private nuchal scans?

I think you'll find the fine print covers the error margins in NHS scans. So you will be on a hiding to nothing.

Hovis1980 Thu 28-Mar-13 11:21:05

Thanks for your post :-) There was 1 week between the NHS test & the Fetal Medicine Centre test. After reading your post I had a look through the small print. They do emphasise this is a screening test not a diagnostic test that gives a risk factor not a diagnosis of Downs. However I couldn't find any info about quality assurance for the risk factor given. In otherwords what gaurantee you have that the component open to human error (the scan measurement) is correct in a high risk case without it being re-checked. Any further thoughts are much appreciated.

HPsauceonbaconbuttiesmmm Thu 28-Mar-13 11:42:11

I've had 2 12 week nuchal scans with dc1&2. Both times (NHS) I've had the nuchal fold measured at least 5 times and the highest measurement taken.

Tbh I think you we're unlucky. I would probably write to the manager of the ultrasound department or PALS and explain what happened and how upset it has made you. I think it would have been reasonable for the sonographer to have asked for a second opinion at the time of scanning as she had such difficulty. Personally I would word this as something to learn from rather than a complaint, as having a week between scans and bloods, you can't really compare the 2, though of course your nuchal should have gone up not down with the increase in gestation.

At the moment you understandably feel angry about the stress you were put under. Try to let it go a bit for the sake of your pregnancy.

photographerlady Thu 28-Mar-13 12:47:06

I also went to Fetal Medicine Centre for an early scan, I can't recommend them enough.

Christelle2207 Thu 28-Mar-13 12:53:21

As far as I was aware your risk is calculated using a combination of scan measurements and blood test. Hence we knew our measurements when we had the scan but had to then go for blood test and wait for the combined result.

Did the Fetal Medicine Centre also check your bloods?

Hovis1980 Thu 28-Mar-13 13:38:12

HPSauce - thanks for your response. You're right... at the moment both me and my husband are feeling quite angry that the NHS put us through so much unnecessary stress. It was really awful having to decide whether or not to have an invasive test that could have caused a healthy baby to mis-carry. What you said is very sensible. It's probably best for us to wait a few days, let the emotion subside and then frame this more as a constructive comment. Hopefully that way there might be more chance of it being taken onboard as feedback :-)

Christelle - thanks for your question. Yes they also took our bloods and the results from both the NHS and also the Fetal Medicine Centre were broadly the same. It was the difference in the Nuchal Scan plus the Fetal Medicine Centre's assessment of soft indiciators that bought the risk down to such a lower figure.

Photographerlady - I couldn't agree with you more. They were fantastic. I wish I was based in London and covered by Kings Hospital so I could access the team through the NHS. They're all incredible and amazingly skilled.

OneLittleToddleTerror Thu 28-Mar-13 13:43:38

I believe they are also one of the few places in the country that can do the harmony test. As fa as I could understand, it is a non invasive diagnostic test that uses genetic sequencing on mothers blood to test for Downs. I have looked into this. And if, touch wood, I got a high risk result from the NHS, I will be getting the harmony test on private, and avoid the CVS and amnio.

OneLittleToddleTerror Thu 28-Mar-13 13:44:36

I'm not London based either, btw. I wish the harmony tests are more available.

Hovis1980 Thu 28-Mar-13 14:13:06

Onelittletoddleterror - I'll be keeping my fingers crossed that you don't get a high risk result. If you do there's a good link that lists all the places that are currently offering it in the UK (you just need to scroll to the bottom)

http://www.innermostsecrets.com/left-menu-items/Pregnancy/Testing-for-Down-Syndrome/harmony_blood_test.aspx

Best of luck!

OneLittleToddleTerror Thu 28-Mar-13 14:15:30

Thank you hovis for the link. London is still closest for me, but I didn't know there are three choices.

BartletForTeamGB Thu 28-Mar-13 14:38:19

You are talking about a difference of less than 1mm.

While I appreciate that you must have been anxious, your first NT measurement was normal and not hugely different from the second.

Margin of error is around 0.4mm, so your first measurement suggests that the actual NT was 2.9+/-0.4mm so 2.5-3.3mm. The second scan was 2.2+/-0.4mm so 1.8-2.6mm. It doesn't suggest human error to me but that your risk has changed because of the slightly smaller measurement and the other soft markers.

Hazbo Thu 28-Mar-13 17:30:16

Similar happened to me. I was measured at 4.6 and given the scary odds. I was booked in for a CVS 2 days later. However, before they performed the procedure, they rescanned and it was only 2.6.
It was put down to human error of the first (senior) sonographer as the Dr said the result couldn't alter so much in 2 days. The first sonographer also hadn't included any photos so they couldn't check what she was measuring.

I thought they always rescanned before an amino or Cvs though?
I also wonder if you had your scan done in the same east London/Essex hospital as me.

Thinkingof4 Thu 28-Mar-13 18:58:08

I agree with Bartlett it's a difference of 1mm or so, taking into account margin for error. The nhs don't check for soft markers, not sure why but I'm guessing this may change in the future as more evidence and research becomes available. Nuchal testing wasn't even offered on nhs for my first 3 pregnancies, just the triple test bloods at 16 weeks. Tests on offer are better now on the nhs than they ever have been before, but will always lag behind private companies who charge huge amounts of money for the more sophisticated tests they offer.

Hovis1980 Thu 28-Mar-13 19:43:43

Bartlet/Thinkingof4 - thanks 4 the info about the margin of error. When we got our 2.9 measurement we were told it had a MoM score of 1.95 (double the average). So when our MoM score dropped significantly with the new NT measurement we assumed that was the main reason for the shift in risk. As you both say it may well be down to the soft markers.

Hazbo - thanks for sharing your experience. The midwife from the hospital called today to ask about the private results. She also thought it seemed quite a shift. I double checked about the policy on re-scanning. She explained that if they re-scanned it'd mean you could have 2 results & be non the wiser about which one to trust. Hopefully if we'd gone doen the CVS or Amnio route they would have re-checkef just before? FYI -my NHS scan was at the John Radcliffe in Oxford. I hope things turned out alright for you after the re-scan.

WipsGlitter Thu 28-Mar-13 19:46:04

Did you have the harmony test done?

Hovis1980 Thu 28-Mar-13 20:59:38

In the end we decided not too as the odds were so much lower after the more detailed scan. However if we'd got another high risk then we would have done. My husband and I had both decided that if we had a Downs baby we'd keep it. But my husband wanted to know in advance so he could mentally prepare himself. Having become a google fiend these past few days the Harmony Test keeps coming up as a fantastic non-invasive option.

Bodicea Thu 28-Mar-13 21:36:06

I think you are being unreasonably unfair on the nhs. First of all the nt measurement alters over time and with baby's growth. . Just because the second measurement was lower does not mean it was more accurate. I actually think it is irresponsible to remeasure. You basically got answer you didn't want and wanted a second test to give you A More preferable answer. Don't have the test if you don't want a difficult answer.

AuntPepita Thu 28-Mar-13 22:03:05

Mine went from 4.6 to 2.85 6 days later. It can go down if the fluid reduces, so maybe it just went down..? They cold both have been accurate measurements a that point in time. My consultant was equally happy that the fluid could have and had reduced to that extent in the timeframe.

The only thing I would be annoyed about is no rescan, but when I had an amino they scanned me first anyway, they could have measured then and you could have refused the needle.

skinnie Thu 28-Mar-13 23:43:20

I had the CVS the other day and my test came back clear ..phew....but I have to say although it was stressful it was not bad. Everyone has a 1 in 100 chance of miscarriage anyway. I'm not saying do it but I i believe I was treated well and the risks when taken in to context are not any higher than usual. I hope no one has to do the test but don't be scared if you do. The NHS give you the worst case scenario for everything to cover their backs and it is all good advice but on careful thought it is not that higher risk. I do hope however the new test comes in soon with just blood test and not a 7 inch needle!! LOL

fatandlumpy Fri 29-Mar-13 07:47:17

I agree with Bodicea (up to a point). Even though you've had a horrific scare I do think you're being a bit harsh on the sonographer. These specialists undergo rigourous training, but they are HUMAN and sometimes mistakes can happen. Also - the NHS is FREE (as in we don't pay upfront) and we (ask for and) get a lot for our taxes. Everytime I've gone for a scan there's a huge backlog, massive overrunning times and a long wait. I will not blame the staff as they do a tremendous job under arduous circumstances and even thought the sonographer seeing me is working under pressure, aware of the queues etc they've always tried their best to a) scan my baby as efficiently and accurately as possible and b) reassure me and let me know what's going on.

I'm sorry you had a tough time, but please don't take it out on the staff...

brettgirl2 Fri 29-Mar-13 20:09:30

It just goes to show what a load of bollocks the combined test is. At no other point would anyone accept a test with a 1 in 20 false positive and failure to pick up what it is meant to 25% of the time. It amazes me that people have it tbh.

Hovis1980 Sat 30-Mar-13 10:22:11

Thanks to everyone for their reflections. I've learnt so much from these posts about the Combined Test which i didn't previously know. In the end we've decided not to raise a complaint, but we are planning to share some general feedback. I agree the NHS offer a fantastic service for free & the staff work tirelessly often for limited pay. I hope our feedback will be seen as constructive not critical:

1.) As was previously said there is always going to be an element of human error. That's just life. But I wonder if it'd help if a minimum number of pictures (e.g. 3) had to be taken of the NTT for the test to be valid?

2.) When we were discussing our options we felt like there were only 2 on the table. Have an invasive test or wait to know the outcome when the baby's born. Reading sites like Mums Net I learnt about the Harmony Test and the more detailed soft marker scan. I'm conscious the NHS can't offer these services, but I wonder if they could mention them when going through the options?

3.) When I signed up for the combined test I knew it was a screening test. But I had no idea about the high false positive rate. If I'd known that we probably wouldn't have gone for the test. It would be really helpful if the NHS could include thess stats in the booklet they give out to help inform the choices people make.

Thanks again to everyone for their comments :-) The whole experience has been quite an eye opener!

BartletForTeamGB Sat 30-Mar-13 10:59:52

The NHS booklet is really clear that these tests are screening tests and can not pick up every baby with problems or guarantee a normal result for your baby.

Part of the problem is that people (going for a sweeping generalisation here) don't understand statistics so false positives or negatives or sensitivity/specificity of tests would mean very little to people. You see here on MN all the time people rubbishing studies because it isn't true for them ("That study is nonsense. My son was BF and has eczema so it can't possibly be protective.") or misunderstanding the risks of things like the NT ("I've been given a risk of Down's of 1:100. Has anyone had a similar one and had a good result?"

brettgirl said, "It just goes to show what a load of bollocks the combined test is. At no other point would anyone accept a test with a 1 in 20 false positive and failure to pick up what it is meant to 25% of the time. It amazes me that people have it tbh."

Her statement isn't true at all! How many of us would decline breast screening? It has a false positive rate of 80% if you look at the statistics of what the outcome is of women who are called back for further testing!

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.

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.

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.

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 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.

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

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.

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!

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

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

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

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

Mother I just wanted to give you a big hug

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.

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.

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.

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

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 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

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.

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.

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.

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

I spoke to ARC and Barts lab both were great

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.

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.

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.

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.

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