Nuchal fold/MSS dilemma

[lazyeye]

Hi all

Sorry if there has been a similar thread as I think there has been lately, but just had some additional questions.

I'm 35 (be 36 when I deliver) and have 2 other children. Got a really good nuchal fold result at 12ish weeks - 1 in 1600, but my MSS has come back 1 in 132. I felt a bit rushed as an appt was made the day after I heard the news to discuss with consultant with view to poss amnio. I've had 2 m/cs in the past. Rang RVI where I had nuchal and they said if I was under their care (am under local hossie) they would have me back now I'm almost 19 weeks and look for other markers. On that basis I didn't attend the appt with the consultant. Has anyone else gone down this route? How reliable will a second scan be at this stage?
Which is more reliable - N fold or MSS - m/wifes say I shouldn't have had both, but I thought they needed it for other things.

Help.....have had worrying weekend.

[Quackers]

Hi lazyeye, do they not join the 2 results? Sorry you're having a bad time with this. Your nuchal result was fab and I though that this was the most reliable method other than a diagnostic test (amnio). If it were me I would weigh up the risk of a 1 in 100 (or thereabouts) risk of m/c against your results of the nuchal and MSS. Given your history of m/c too, would the amnio be something you could go through, with such a good nuchal result? I have foregone all tests for Downs as I couldn't face being in the position of deciding if I want it and going through termination etc.. after all the last years heartache. I know this way I'm leaving it in someone elses hands. But of course this is just my decision. HTH you chuck. best of luck. xxxxx

[dinosaur]

Sorry to hear you have all this to worry about lazyeye. I'm afraid I'm going to be no help as I don't know a thing about the MSS. I do know from previous experience with DS2 that if you go for a second scan they will look very carefully for "soft markers" for Downs (and indeed for other chromosomal disorders). The difficulty is that they might well find one or more soft markers (I think they're not that unusual) but these absolutely do not mean there is definitely a problem - it just makes the dilemma about whether to have amnniocentesis all the more acute. DS2 had two "soft markers" for Edwards Syndrome and I ended up having amnio because I was too scared of the idea of going through the rest of the pregnancy, labour and delivery knowing that if he had Edwards he would probably die within a few hours of being born. But he was absolutely fine, so of course I put myself at a greatly increased risk of miscarriage for nothing. This time around, I have decided that I would be too devastated if I had amnio, had a miscarriage and it turned out that the baby was fine - I have decided that I am not having any more tests and will just accept that whatever comes, comes. But it is so much a personal decision and really hard to make.

Anyway, sorry that has turned into rather a long ramble and is probably not very helpful. I suppose the key question is - what will you do if you have further tests and they show up a potential problem? AS I said, my answer to that question has I think changed from the last pregnancy to this one , probably because I'm 38 now and I kind of feel that it's now or never.

[aloha]

With your nuchal result I would feel totally reassured. At the age of 37 I had a much 'worse' nuchal result than you (1 in 600 or something) an no other tests and my scanner said she strongly advised that I didn't have an amnio etc as the risk of miscarriage was so much higher than the 'risk' of my son having a chromosomal defect. I think your result is amazingly good. I don't even know what an MSS is as Kings only offered the Nuchal.

[lazyeye]

Thanks Aloha - Mss is the triple test - blood screening to pick up serum levels for spina bifida and Downs. In retropspect I wouldn't have had it either - but nobody told me & now I just have the worry......I probably won't have the amnio unless the second scan shows up something very bad...I just wondered how accurate this second scan is likely to be.

[dinosaur]

If the sonographer sees anything of concern on the second scan he/she will refer you to the fetal medicine unit at your hospital who can carry out a more detailed scan. The problem as I said is that these scans pick up all kinds of things which in themselves are nothing serious but can be "soft markers" of chromosomal abnormalities. For example, DS2 had talipes (clubfeet) nothing in itself to worry about - and a choroid plexus cyst - a little cyst on the brain, absolutely harmless and disappears by itself - but these are both "soft markers" for Edwards Syndrome, hence on their calculations of the odds my supposed risk of both Edwards and Downs became much higher. However as I said, just because they find a soft marker does not mean that there is a problem - and the only way to know for certain is to have amnio centesis . So these scans are very "accurate" - but they will not give you a specific answer.

[Quackers]

On another thread I think someone pointed out that the triple test was not as reliable as a nuchal and the 2 should not be done together. I should also point out that your risk could be 1 in 6000 and you could be the one. Your risk could be i in 10 and you might not be affected at all. It's really tough and that's why as I said before I just couldn't be facing these what if's and ratios. Inly an amnio will tell you and the risk of that against your low nuchal result jsut doesn't weigh up. Good luck with this and whatever you decide. xxxxx

[aloha]

I am sure the nuchal is more accurate. I really wouldn't worry if I were you, esp after having to m/c. Have hte second scan and it will show the spine in detail putting your mind at rest. It will also show the heart and brain and all sorts. I'm sure your baby is fine.

[madgirl]

lazyeye, lots of love and support from me. ((( ))))) i can only reiterate a couple of things that others have said here- the nuchal is said to be the most reliable risk indicator these days but it is exactly that - a risk indicator. what would you do if found out it was downs? if it is very very important for you to find out for certain, then you have a good reason for it, so why not have the amnio? i in fact decided against it, a combination of my rethinking the numbers and realising that i would not be able to terminate (psychologically that is) at such a late stage, also because I realised late in the day that a downs baby is a different baby but MY baby and i could never ever imagine not wanting him/her because of that. however, that is a very personal thing, and no one would judge you for thinking differntly. sorry if this post is a bit all over the shop....there are all sorts of threads that say the blood tests are now regarded as highly inferior and reliable as downs indicators but then ther eare also so so many babies which are "high risk" and normal, and vice versa. hthx

[Quackers]

Madgirl that is a very wise way of putting it. For me anyway, you have confirmed my decision not to even have the AFP test at 16 weeks. It may be a downs baby but it's my baby and has been given to me. TQxx

[lazyeye]

Thanks for all your msgs. I think I will just have to take it a step a time, but I feel like I won't be able to go through with an amnio, for fear of getting a positive result....and then what....... but I might change my mind on the basis of what the scan says.

[SpringChicken]

Never been through it Lazyeye so can't say i know how your feeling but i would suggest you have the 2nd scan done and just wait to see what happens from that! You never know, everything could be absolutely fine and then all this worrying would've been for nothing.

Wait until you have the 2nd scan, they will know what they are looking for and will be able to talk to you more indepth - then and only then, if things don't necessarily turn out for the best you will need to decided what to do next. Take one hurdle at a time!

Good Luck x

[juelgaz]

Hi Lazyeye,
Not sure if this message will help you or not, but just want to tell you of my experiences, and also to let you know that I am feeling for you, it is so difficult making these decisions isn't it?
Last year I lost a pregnancy due to my baby having Downes Syndrome.
When I found out that I was pregnant again I was delighted but I also knew that I would have alot of difficult decisions ahead.
I also went to the RVI, with the intention of having a CVS. When I got there we were persauded to have a nuchel scan before CVS. Before the nuchel scan my risk was 1:54, and after a good scan result was adjusted to 1:439,I am 37 years old.
We then decided to go for an amnio at 16 weeks, rather than a CVS, which carried more risk of a miscarriage.
When 16 weeks came we were so unsure about risking baby, and after long discussions with the midwives at the RVI, we came up with the conclussion that we were at more risk of having a miscarriage than of having a baby with Downs. The staff at the RVI were brilliant, and I have since has two scans, including my anomaly scan, at the RVI, where they did indeeed look for soft markers or any signs of abnormailty. I am pleased to say that every thing looked fine on scan. If they had of picked up anything I could still have had an amnio even at that late stage to give me a definate result. As my midwife said, nuchel scans are 85% accurate, and your result was brilliant, and I think that you should find that reassuring. I didn't have a MSS, so I am afraid I can't comment on that. Sorry long drawn out message. I know that it is easier said than done, but try not to worry too much, and do let us know what you decide to do.
Take care,
Juelgaz

[Blu]

Lazyeye, so sorry you are having to juggle all this, it's an emotional rollercoaster, isn't it? I agree with Aloha. Your nuchal result is so good, and the MSS result is still less than 0.1%. if the second scan DOES show other markers, you still have the option of amnio, if you want it, but it might be an idea to ask what mc rate that particular unit/scanner has. The chances are hugely in favour of there being no problem whatsoever, but whatever the outcome, it will focus your mind on what you want to do. Good luck, and I do know that this waiting period is horrid cos we went through it too. Hugs.

[lazyeye]

Well, now my consultant has more or less said there is no point in refering me for a scan looking for Downs markers when I got such a good nuchal result. I suppose I have to be content with this, but how come they would have let me have an amnio but won't give me a scan? Odd.

I can't decide to let it go or push for the scan via some other route.

[juelgaz]

Hi Lazyeye,
I would be reasssured by the fact that your consultant doesn't see the need to refer you for a scan, but can understand your concerns still. I personally would push for a further scan, just to give you peace of mind. I know that you are now under your local hospital, but why not phone the RVI and chat to someone there about your concerns, other than that I would push for a scan with your midwife. Thinking of you, keep in touch, Juelgaz

[lazyeye]

Sorry to re-raise this one, but feel like I'm getting pushed in direction of amnio.

Went to see consultant last week & it certainly isn't the case that he refused to refer me because he was sufficiently re-assured by the nuchal. He very firmly said that the nuchal is no more reliable that the bloods, just that each camp had its own protaganist.And that he really didn't refer me because they follow the NICE guidlelines & if I choose to do something else, then so be it.

He more or less said that if I want to know if the baby I'm carrying has Downs I have to have the amnio. I'm very confused now & more unsettled than when I went to see him.

I'm having my normal anomoly scan on Thursday and he said they would look for markers there but that still an amnio was the only sure way. I know he is telling the truth, but I'm so confused. Why did I get one good result and one bad? What the hell am I supposed to do?

[Quackers]

Lazyeye, I'm so sorry you're not getting a straightforward answer here. I think what it boils down to initially and my consultant reaffirmed this for me last week is the risk of m/c during amnio against the risk assessment you have been given. The risk of amnio is 1 in 100 or thereabouts. ALSO - the decision you would take in the evnt of the amnio being positive. Would you terminate at 22 weeks? This is something really personal and only you and your DH/P can decide that. I could not terminate personally so late, but that's me and not important to you. Do you know/feel what you would do??

[zebra]

I can't find it quickly but I know I have seen a chart showing the ability of the triple blood test to detect chromosone problems compared to maternal age; the triple is better at detecting chromosone defects with increasing maternal age, so it might approach the general accuracy of the nuchal fold test after age 35 or so. Still I wonder if it's a tall claim; in general, the nuchal fold is a much more sensitive test.

I seriously wonder if you shouldn't go for a private amnio at King's College (London) where they reckon they can get the risk of miscarriage down to about 1:300 (the general NHS hospital quote is a risk of 1:100). You're going to go nuts in the meantime if you don't. Plenty of Down's babies don't have detectable problems ("soft markers" ) on the ultrasound (and what's worse, plenty of non-chromosone defect babies do have soft markers!). I just get the impression you want & need certainty, now, Lazyeye.

[lazyeye]

Yeah, I don't know what my decision would be if the amnio came back positive. I feel I've had so much half information I feel a bit battered, but certainly nudged a bit more in dir of amnio. My bloods came back 1:134 for Downs the risk of m/c with amnio would be 1:200 - not much in it, so maybe I would be interested in Kings. How would I get referred though? My consultant doesn't seem to see the need.......

I'm not sure I could terminate either Quacks. But I think I need to be a bit prepared if it is a Downs baby. I have 2 children under 4....its going to shatter my life and have a big impact on theirs if I have a handicapped child.

[Quackers]

I agree lazyeye, it's such a difficult thing. Howvever if I wanted to know I would pot for Kings as their rate is so low. My consultant is 1 in 150, which is still good but you just want your risk minimised. I think if you call you can get a private one done, but it might be worth talking to your Doc/consultant about being referred. That way you've done everything you can and minimised the risk as much as you can. That's all anyone could ask of you. Good luck.xxxx

[zebra]

Just phone up Kings College yourself, Lazyeye, and ask to book it privately. Don't know what it would cost but shouldn't be extortionate (?£200?). ASk them what the M/C rate is, and how soon they can see you.

[twiglett]

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[Pigwig]

At the risk of sounding stupid, can I ask about the Nuchal scan. I got my 12 week scan which I just assumed was a dating scan, nothing was said about a Nuchal scan at that point. Is the Nuchal scan seperate from the dating scan or is it the same thing??

[zebra]

The nuchal fold is only offered at some hospitals, and even then, sometimes only to women over a certain age. I think the plan is to roll it out as a service for all pregnant women, eventually.

[lazyeye]

Rang Harris Birthright but without referral an amnio would be in the region of £400. Money isn't really an issue but travel to London/childcare is on top of it all.

I'm starting to feel very down about all this and am now thinking about arranging an amnio in any case for next week (regardless of scan result) but maybe asking for it at a slightly bigger hospital - our RVI in Newcastle which has a fetal med unit. I'm frightened my consultant will be pissed off with me for not having it done locally.

This really is a worrying time for us.