Due to useless GP and then useless midwide was too far along for my nuchal scan and screening yesterday at 14+1

[anroga]

I went along for my nuchal scan and screening and had been reassured that at 14+1 this was not too late even thought I had my doubts. As I suspected the sonographer said the babies measurements were too big to do the nuchal scan and therefore no use doing the bloods that are linked to that.

I now have a quad blood test on Friday instead which isn't as accurate, am now worried anyone else had this and all has been well? I did read this morning that they do check again for spina bifda and downs features at your 20 week scan?

yes I had the same.

I think they just dont really care, they will offer you the quad test and that is perfectly fine for them, but we anxious moms know it is not as reliable.

I should blame them also because they booked my scan late, to he last possible date 13+6 (by period dates), obviously they must have lots of cases when the dating moves up couple of days either way and they should know that, but I think somehow you just get lost in the system and unavailability of appointments and really you dont have argument as they will tell you you can still have quad test.

I had Harmony test and private nuchal scan done before I went to NHS nuchal so I was not pursuing the issue but otherwise...

I can tell you that the numbers I received from all these tests went in this order from worse to best:
quad test- was worse 1:300- should I have only this one done I would not sleep
private nuchal-1:3400
Harmony 1:10 000

I would suggest you either go to Harmony or similar test or at least book a private scan. If you go to place like FMC they will check baby's organs and spine at 12w scan and check for markers for Down. IMHO waiting to 20 weeks to find out some possible bad news is too late or way worse than finding out at 12w.
Of, course it depends also if the scan results would influence your decisions about keeping the pregnancy or not.

Thanks for your message and advice Zahrah 5 been thinking about looking into the Harmony testing. I think the private clinic I had my ICSI with does it so will get in touch with them.

Can see from your results how much they differ with the different testing.

This happened to me. Due to general cock ups we went for the scan at 13+6 and baby wasn't playing ball and they couldn't due the nt. They would normally bring you back in for a further scan but as it fell on a Friday it would have been too late by the next appointment. I was pissed off. I'd rung to make my booking in appointment at 7 weeks and they couldn't "fit me in" until 10 weeks and this just seemed to cascade into the scan dates.
As they couldn't do the nt they didn't bother with the bloods and I had the quad test at 15 weeks. You get a likelyhood same as the 12 weeks and mine was 1/10 000 so low risk (but not at low as ds who was 1/28 000 so I still had concerns). I was really relieved but it made for a very stressful few weeks.
I was told that it's more likely to give you a higher chance then the 12 week one so could lead to a tough amnio decision. I'd made the decision that if the results came back high risk I'd have the amnio so the accuracy was important to me. Zahrah is right- they mostly couldn't give a shit, my stress could certainly have been avoided with booking the bloody scan with a week to spare. It can't be beyond the wit of man when your dates are reasonable can it?
That said, all is well, 1/10 000 is low risk and her 20 weeks scan looked good. Yes, they check for several Downs features there too so, for me the 20 weeks scan was very reassuring. I've not been much help I realise!!

with Harmony you will get either 1:10000 for each trisomy, what is the all clear result or you get bad result, but nothing in between.

I was 14+1 on my first scan. They lost all my details before so never heard from them until I chased at 10 weeks. Was meant to be 13+3 on the scan but baby measured older. He wouldn't behave either so had to have quad testing which couldn't be done til 14+2 so had to go back the next day! My result was fine and to be honest I haven't worried about it or tested somewhere different incase I got a conflicting result. Do what's best for you.

Yeah similar happened to me. Had the quad test and got a less than 1:10,000 result. 27 weeks now so don't know what will happen obviously but 20 week scan was all fine.

Same here. Was booked in for "12 week" scan at 13+3 and then found out that I was actually 14+3 at the scan and had none of the nuchal fold to measure .

I had the quad test at 16 weeks and that came back with a very low risk, but for someone of my age (between 25 and 29) the accuracy was only 62% - the older you are, the more accurate it becomes.

As we'd heard some bad things about our local hospital (and having experienced a very ropey consultant there), we opted to cancel our 20 week scan with them and have it done privately instead... I'm glad that we did, though it was a fair chunk of money that we could have done with using for baby things.

I'd vote for the Harmony test too. Peace of mind for £400.

Its not right is it Nickyeds I am fuming about it this morning. I had to chase the midwife all the way and all she kept saying is I had plenty of time and now look what has happened. Glad to hear you worked out low risk and that at the 20 week scan they do look for features etc as extra reassurance.

Interesting to read the older you are the more accurate the result MissAnxiety at 38 mine should be pretty accurate!

Artistic can you have the harmony test at any time?

anogra

I am 37.

The way it works you will get risk ratio based just on you age (you can google it). Then this number will be adjusted up or down depending on the result of the test. So with high age you are already bound to have much higher risk(lower number) than someone 10 years younger with same test results (nuchal thickness, blood levels).

That was the reason I decided to go for Harmony right away. Since I had that done plus the detailed scan of anatomy at 12w I was able to relax and ease up and enjoy the pregnancy.

I'm in the unfortunate position of being out of the country for the exact entire suitable period for the nuchal scan. So I'm having the NIFTY non-invasive prenatal test done when I'm 10w+4d, just before I fly out, and an NHS scan at 14w+2d, probably with the quad test. NIPTs are a bit pricey but totally worth it for peace of mind. You can do Harmony or NIFTY from 10 weeks.

Similar to some ladies above, when it became clear for me that my hospital will not book a scan in time, I went privately for Harmony package. Quad test is less sensitive - i.e. misses more trisomies than combined screening at 12 weeks. If you decide to get Harmony, be careful of what is offered in the package - whether the blood test only, or a detailed scan as well. Private clinics vary on that. Harmony can be done at any time after 10 weeks.
Best of luck, and I think it is outrageous that hospitals so carelessly arrange scans at the wrong dates. I self-referred at 5 weeks, and my booking appointment was at 12 weeks, and they refused to book a scan before I had booking appointment! As if seeing midwife would have changed my dates...

Thank Daluze for your advice. I think I will see what the outcome of this quad test is and then decide on the Harmony test, I think my fertility clinic offers them so would definately go back to them for it.

Its so wrong isn't it. I have been messed about with my booking appointment and this nuchal scan and screening.

TheMsShip

depends where you are going but you can look into scans and testing in the particular country.

I went to detailed anatomy scan overseas with the lead doctor in fetal diagnostics field in that particular country and it costed me privately only 50 eur, including 3D scan. I think anywhere else will be cheaper than private scans in UK.

He checked so many things, even FMC did not check that and I receiced one page detailed report with all sorts of little details of each part of the body.

Zahrah5

The country I am going to it would be rather expensive to have an NT scan & bloods privately, probably about half the price of Harmony or NIFTY done here. I'm not sure it would be worth doing both the NT scan and the NIPT, but I'm having a look around for private clinics just in case.

The point I have forgotten to raise (baby brain!) is that I got pregnant through first time ICSI after 4 years of ttc. Any of you also opted for the Harmony test because of getting pregnant through ICSI or IVF?

A similar thing happened to me yesterday, my scan was at 13w2d from my last period however they have dated me as being nearer 14w now and couldn't get a clear shot of the baby to do the nuchal scan. I'm going back next week but have been told that whilst they can do the measurements I'll now need the quad test.

TheMship
NIPT tests only for 3 trisomies (T13, T18 and T21). There maybe other reasons (rarer chromosomal defects, heart problems) that can cause increased NT. Also, changes in hormonal levels may indicate placental issues, warranting latet growth scans. Therefore it is definitely worth having a detailed scan and hormonal blood test as well as NIPT. Actually, when I was at FMC, ghd sonographer was very reluctant to tell Harmony results before the scan, in case the scan indicates any problems. Only when we confirmed that we know the limitations of Harmony, she told it was negative.
However, since you won't need to calculate risk for trisomies, you can probably have you scan a bit later.

That's a good point and something I was wondering about. I'm leaving on 11+1, maybe I can try to get an nt scan appt for the day before, the person making the appointment said it was too early but I thought 11 was the easiest... or try for one in Canada.

Easiest = earliest

Melb2014 I had the measurements done on Tuesday they were able to do that bit and then the quad test tomorrow, does it make it more accurate if they get the measurements aswell?

After speaking to dh last night I am seriously considering just paying for the Harmony test, its more money (as we had to fund ourselves for ICSI) but I am worried about how accurate the NHS testing is especially as I am 38 and have got pregnant through ICSI.

Like all of us I have been worried since day 1 and just think will I always be doubting the result where as I think the harmony test is 99% accurate?

Nope, 11+2 is the earliest. Tried my sweetest talk but no dice. Nifty plus later scan and quad test then.

Please contact the Supervisor of Midwives at your hospital to let them know and ask them to reassure you that the best of your care is going to be up to scratch.

Hi anroga I hope you get something sorted so you feel better! I have two ivf children and didn't do harmony for either.I was lucky to have the combined test though, I'm 35 and current pregnancy still 1:15000 following combined test, so I think age and ivf don't automatically raise your chances to being very high risk. If it were me I'd try the quad test and only go private if that test indicated high risk - having funded multiple ivf attempts myself I know how expensive it will have been to get to this stage.

Carrierpenguin thank you so much for your reassuring message.

I have been thinking just the same to wait for the quad test result which will hopefully come back by the end of next week and then if it comes back high risk I will book a harmony test for peace of mind.

As you know at the end of the day when you get your BFP all the money you have spent pales into insignificance but if spending another £500-00 or so can be avoided it would help towards the new baby.

Glad your result came back low risk and hopefully you are now enjoying your pregnancy.