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Not doing invasive testing.. what will the NHS offer me instead?

(31 Posts)
Sparklies Mon 22-Nov-10 14:45:56

I'm currently 15w6d, and after my NT scan (great!) and bloodwork (horrific!) 1 in 34 for T21. For a variety of reasons, we won't be getting any invasive testing done before 30 weeks.

Does anyone know what the NHS might offer or I might be able to ask for given I've declined their offers of amnios/CVS and I'm quite clearly screen positive? I'm thinking of:

16 week quad screen bloodwork
A more in-depth anomaly scan (maybe at Kings - I'm currently at Queen Elizabeth in Woolwich)
A cardiac scan (Kings again)
An amnio at 30 weeks, i.e. post viability, just so we know for sure

Now I'm guessing they probably won't go for any of that, I had my chance for an amnio and I said no. But has anyone had any luck getting these things after declining invasive tests?

I realise I can probably get all of these privately at the Fetal Medicine Centre (we went there for a second NT scan, no soft markers found thankfully) but we're not made of money sad and justifying it to DH, the main wage earner, is not easy.

whostolemyname Mon 22-Nov-10 16:11:17

They should offer you an anomaly scan with a fetal medicine consultant and a cardiac scan at 23/24 weeks on the NHS. I dont think they will give you a quad test as it could confuse the issue (i.e. which do you believe if they are different) and the nuchal is more accurate anyhow. Im not sure about eh amnio at 30 weeks sorry. Sorry you are having the stress of this and i hope it all works out well for you.

Sparklies Mon 22-Nov-10 16:40:41

That sounds promising! If we were sent anywhere outside of QEH, it would be Kings as that was where I would have gone for the CVS they offered. I'm more than happy with Kings as they have amazing stuff there (I had my antenatal care there with DD2) and do so much research.

Yeah, I wasn't too sure about the quad screen either. By all accounts they only take the worst risk no matter what else shows up in bloods so it would be redundant. I think for my own interest I'd like to see the results (I firmly believe my high bHCG is natural for me, and if it was 1.0 MoM instead of 1.91 MoM my risk would be 1 in thousands) and if they fall on a more normal level. Of course, law of sod, there'd be something else worrying in there so perhaps it's best I don't do it!

Thanks a lot :-) I'm hopeful it's all okay but not knowing for sure and for so long is rather draining, to put it mildly!

spaceal Mon 22-Nov-10 17:51:31

Hi Sparklies,

As you know from my previous thread, I'm in much the same position as you, though currently 24+5.

Since we had the dodgy results and refused the amnio, we have scans every four weeks with our fetal medicine consultant (not privately, in our normal NHS hospital), so far at 17 and 21 weeks with another one booked for 25 weeks (a week today). These seem to have been to reassure us rather than out of 'necessity', since none of the scans have picked up any soft markers.

Our consultant did also originally offer us a specialist fetal cardio scan at 23-24 weeks but has now decided that's not necessary as she got such a good look at our little one's heart and all seems OK. She's also said that we can still have an amnio (on the NHS) at 28-32 weeks.

So basically all that you're suggesting we've got on the NHS without having to ask, let alone push.

I did ask about a quad screen and our consultant didn't seem to think it made sense, mostly for the reasons whostolemyname suggested- more bloods might just confuse things.

Hope this helps.

squeezytoy Mon 22-Nov-10 21:05:59

Hi Sparklies, the worry is so draining, I'm sorry you're having to go through it, I hope you are getting a chance to enjoy the pregnancy as well.

I'm sure there are people on here who know more than me but my experience is as follows, some you know from prev threads:
I had a dodgy risk for T21 (1:7) mostly due to bloods & age, which CVS has excluded, and my NT was 2.5mm. The consultant said I will get a standard anomaly scan at 20wks.

BUT, if the NT had been higher, there would have been anomaly (heart?) scan at 16wks - 4 wks earlier than the standard 20wks. We asked about echocardiography and they said we didn't need it (because our NT under 3+ or maybe 3.5+, I can't remember the cut off level) but it's worth asking them - I think some places do it from 13wks (been reading article from Toronto) but not sure what they do in London... As you say King's is a centre of excellence and if I were in London would be happy to go there.

I know this only contains scraps of info but hoping it helps a little and also wanted to say good luck and take care and we have everything crossed for you.

hobnobsaremyfave Mon 22-Nov-10 21:09:14

Sparklies, when I was expecting DS2 he had an elevated Nuchal measurement at 12 weeks. We declined invasive testing at that stage. The hospital were happy for us to hve regular scans, a detailed anomaly scan at 20 weeks, a detailed cardiac scan and a diagnostic amnio at 32 weeks. In the end we did not have the amnio as all the other scans had been positive. We the had further scans until term and he was checked thorughly by the paed team before discharge from hospital. DC was (and is absoutely fine).

lucy101 Mon 22-Nov-10 21:09:54

I had a friend who was told she could wait until 30 weeks for her amnio - this was at Kings under the NHS too. I am sure you can ask for one after this date... maybe you will need to make a fuss or get transferred to a different consultant (as part of your right to a second opinion?).

Sparklies Mon 22-Nov-10 21:15:16

That's wonderful to hear spaceal - it's nice they don't consider the amnio offer to be the end of it. It's also good to hear there is NHS precedent for it so if my consultant does get arsey about it, I'll feel a lot more confident in asking for those extra scans. I've no idea which way they will go right now!

Thank you for that, it really does help!

Did you also have a regular anomaly scan at your normal hospital or did the one with the fetal medicine consultant override that? I have a regular anomaly scan booked at my local hospital but I am willing to bet I would probably be referred to Kings College for a more in-depth scan.

Sparklies Mon 22-Nov-10 21:21:03

Thank you very much squeezytoy - hmm, my NT was 1.6mm so perhaps they won't be so generous with the cardiac scan! I guess I will have to see. Certainly the doctor I saw at the Fetal Medicine Centre privately recommended I have a more in depth scan but then that's private healthcare, not the NHS wink

hobnobsaremyfave - So glad to hear that everything turned out alright, and it was very nice they offered you the amnio at 32 weeks too. What was your measurement out of interest?

lucy101 - that's good to hear. I am more than happy to demand second opinions from consultants (have learned the hard way to not just sit and nod meekly!) and if needs be I would transfer my care to another hospital entirely if I thought it would help! I did that with DC2 in fact. I know that somebody said to me I could have an amnio at 30-32 weeks but I can't remember if it was the lady on the phone from my local hospital or the private Fetal Medicine Centre.. I'm hoping it was the NHS lady!

The last thing I want on delivery day is to have any doubt about T21 one way or the other.. I want to be meeting baby, not scrutinising his or her eyes and nose. So I think I definitely want to know for sure before then. Just not pre-viability!

Thank you everyone, really useful!

hobnobsaremyfave Mon 22-Nov-10 21:31:01

Sparklies I'm sorry I can't remember it was 9 years ago and I have tried to blank out what was a horrible time! From what I remember I think they thought he had a cystic hygromma initially. At 20 weeks they said his NT measurement was 2mm within normal limits. There were no other markers at all. I really know what you meant about needing to know before the birth but in the end I just couldn't go through with the amnio, I was ready to have the steroids and cancelled 24 hours before my appointment. However I kept checking DS over and over again till he was 6 weeks old.!

Sparklies Mon 22-Nov-10 21:38:30

Ugh to the cystic hygronoma, I can see why you were worried. I don't blame you for forgetting the details either. It is incredibly stressful.

It's quite possible I may change my mind too at 30/32 weeks. I flip-flopped forever about deciding on CVS/amnio at the moment but eventually settled on not doing so. Having a baby in SCBU because I didn't fancy waiting a few more weeks.. I know it's a tiny risk but I do see where you're coming from! Who knows if I will change my mind too.

So many tough choices. No right answers!

hobnobsaremyfave Mon 22-Nov-10 21:44:43

Sparklies it was a really strange time but everytime we were going actually do something e.g CVS or amnio me and DH felt really freaked but whenever we stepped back and accepted that whatever will be will be we just had a sense of "peace", I can't explain why! THe not knowing did drive me nuts though

hobnobsaremyfave Mon 22-Nov-10 21:46:16

DH reckons DC's NT was 1.6

Sparklies Mon 22-Nov-10 22:18:32

Thanks for that - same as my NT then!

I do wonder if all my scans looked great if I'd do the same as you and back out of the amnio at 30 weeks. It's a tough call. I know the odds are so slight of anything happening, but half the time you're only in this situation because you're already that 1 in something silly so it's not difficult to make the leap that it might happen again.

I feel instinctively this baby is okay too.. I just wish I could rely on that instinct!

spaceal Mon 22-Nov-10 22:37:26

Sparklies - yes, our detailed scan in fetal medicine overrode our normal anomaly scans - we didn't have a normal 20 week scan, just the ones at 17 and 21 weeks.

She checked way more than would have been checked at the anomaly scan - all possible soft markers, including the joints in our little one's little fingers! And all organs etc. She checked everything at both scans, and I expect will again on Monday (25 weeks).

We're currently coping OK with the not-knowing, much better than I thought we/I would. As hobnobs said, we've also felt at much more peace after each decision, even though each decision has been hideous. Like you, I still worry about how we'll feel at the birth and if we'll focus way too much on the Downs question, rather than anything else. For that reason, we are still considering the late amnio option.

hobnobs - did they give you the steroids as preparation for amnio-induced early labour? Is that standard practice, do you know?

Our little one is doing a lot of moving now, which feels good and makes me feel that all is well, even though I know we still have a 1 in 40 chance, or something.

It is all very difficult - fingers crossed we will both be OK, Sparklies.

Sparklies Mon 22-Nov-10 22:56:15

I'm seeing my consultant at QEH a week tomorrow so I think I will ask them for a more detailed scan. She said she was giving me until then to decide on the amnio so I guess we haven't ruled out getting the better scan!

I think getting more and more good news helps. Goodness only knows how I'll feel if a soft marker pops up. There's a chance a false one might as all my children have short femurs because all the women in my family do! Seriously, trying to find short-legged maternity trousers is impossible!! We'll cross that bridge when we come to it though - no point agonising over the potential of a future agonising decision after all.

I want an amnio a week before my scheduled c-section - that would be perfect! Alas I am pretty sure I won't make whatever date they schedule for my c-section as I have a tendency to PTL, but it's a nice thought. If I do make it, chances are good it'll be on Wills and Kate's wedding anyway at I'll be just past 38 weeks when they're predicting it (28th April apparently!)

Keeping everything crossed for you too spaceal - it's a long hard slog. I have to admit to being secretly envious of those who braved the amnio, got the good results and the pregnancy was fine!!

Bubandbump Tue 23-Nov-10 19:47:29

Sparklies how did it go? I know we've talked on another thread but I was also QEH before being referred to kings and the cardiac scan we had last week was there with the cardiologist. We also now have the 20 week anomaly scan at kings and another ECG and as we are Nhs I would struggle to see why you wouldn't be offered the same treatment. They also gave us the in depth scan at kings prior to having the cvs and it really is much more in depth - ours took about an hour to get all the measurements. Btw you are due around the same time as me so I might see you in the maternity ward in QEH if everything goes ok!

hobnobsaremyfave Tue 23-Nov-10 19:55:46

I had all the steroids ready to have pre the amnio but in the end we didn't have the amnio. The fetal medicine team at the University Hospital of Wales were more than happy to perform an amnio at 32 weeks just for a final definite diagnosis.

Sparklies Tue 23-Nov-10 21:10:55

Bubandbump - Thank you very much for that information! Unfortunately the appointment is not until next Tuesday although I have a cervical length check there (due to the other reason I'm high risk, joy!) on Friday. I'll be 17 weeks next Tuesday, hopefully not too late for a referral to Kings for decent scans. There is a huge difference, you are right. I'd never be reassured with a bog standard NHS scan. Those detailed ones go on so long I actually start getting bored with it, which is amazing as I thought I'd never get bored of seeing my baby!!

That's very reassuring indeed that QEH would refer you. So if my consultant, or should I say the registrar I get on the day, gets funny about it (you never know with these people!) I'll just tell them they have a recent precedent!

I'm still undecided if I'll actually deliver at QEH as I had a bad experience with delivery of DC1, but it is by far the most convenient hospital (10 minutes away if you ignore the needing an extra 15 minutes to park issues..!) However my consultant is very nice (Mr. Patwardhan) who I saw privately for a loss and follow-up dramas in 2007.

hobnobs - Thank you, that's good to know. And interesting that they offer the steroids too.. just goes to show that there isn't exactly the confidence in amnios that you'd hope for!!

eidsvold Wed 24-Nov-10 08:05:45

I was given a fetal cardiac scan after my daughter's complete avsd was detected at 20 weeks old. We declined an amnio despite being told that if she was born without down syndrome it would be very very rare.

We were given another fetal cardiac scan around 24 - 26 weeks as well as another detailed anomaly scan where they took a lot of measurements and looked at all sorts of things - at the harris birthright trust in Kings hospital. I was also transferred to consultant care rather than midwife care at 22 weeks.

Then at our local hospital from 30 weeks scanned every fortnight to monitor dd1's continuous growth and development - scans then became weekly at 36 weeks.

spaceal Wed 24-Nov-10 10:19:14

Sparklies, yes, I too feel a bit of envy of those women who just went ahead with the CVS or amnio, got through it, and know all is OK. I do wish I could have done that, but when it came down to it, I just couldn't. Maybe that makes me a wimp but...

Sparklies Wed 24-Nov-10 23:43:35

Thanks eidsvold - sounds like you were well looked after! I guess I am a bit worried because every medical person I have seen has looked at me a bit funny for declining invasive testing (it's not their baby, is it.. grrr) and I was worried I'd be thrown on the scrapheap for not giving them the chance to know for sure!

spaceal - I'll join you in the wimp club! Aside from the obvious practicalities (I need classical c-sections for losses post 12 weeks, oh yay) plus the fact we wouldn't terminate for T21, I just don't know if I could ever live with myself if I lost a baby to something like that and it's that bit that makes me chicken! All that avoiding blue cheese then I get someone to go stick a needle in the sac ;-) I'm reminded a million times the risks are minute and quite a few people elsewhere (not mumsnet) have been quite judgey about it angry but I keep being the 1 in whatever stupidly high number with my pregnancies and I don't like playing that game unless I absolutely have to and the benefits outweigh the risks! For me aside from peace of mind there is no actual benefit, so..

I read that there will be a maternal blood test available from 7 weeks in about 5 years time that will be as conclusive as CVS/amnios are. Roll on that day! Too late for my childbearing years though I suspect!

eidsvold Thu 25-Nov-10 05:43:54

sparklies - I went on to have two other children and each time was offered invasive testing as a matter of course along with all sorts of appointments and I just refused saying we knew about dd1 before she was born or I would ask them why they felt I needed it - which often made the squirm - cause they wanted to say so you could terminate the pregnancy more often than not.

you could always point them to this article

BaggedandTagged Thu 25-Nov-10 06:14:04

i dont get that article- if you work through the maths, doesnt that imply a risk of miscarriage of less than the cited 1/100.

i.e amniocentesis offered to anyone with a risk of more than 1 in 300, so say the average risk of an amnio scan is 1 in 150. To identify 3 downs babies you therefore need to do 450 scans. If you only lose 2 healthy babies in those 450 scans (I'm assuming that the 3 DS losses were terminations)then the chance of miscarriage is only 1 in 225.

Am I missing something? Not that this takes away from the OP's concerns, which are a completely personal choice. I just think the article is misleading.

spaceal Thu 25-Nov-10 09:35:19

Our friends and family were very good, and few actually came out and said what they thought until after we'd made our decision. And I think most actually thought we shouldn't do the test, given we had no intention to 'terminate'.

I always think it's strange that people compare the odds of amnio-related miscarriage with the odds of having a baby with Downs since our concern was that we'd miscarry any baby not just one without Downs. And clearly the odds aren't related either - you have a one in whatever chance of miscarrying regardless of what your Downs odds are.

I think, as well as the really strong primal fear of losing my baby who I was feeling a lot by the point that we would have had the amnio (21 weeks), I was also scared sh*tless by the idea of waiting around for 4 weeks afterwards, anticipating a miscarriage. It felt like another month of the pregnancy would have been lost to extreme anxiety, on top of the weeks of worrying about the odds/possibility of Downs in the first place.

Sadly I think the 5 year wait for a non-invasive test will be too late for me too - I'm 38 now... All this has certainly made me think harder about having screenings with any second pregnancy.

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