# Nuchal Tests, quadruple Tests and only 1 twin!!



## Dobby (Oct 23, 2005)

Hi Jan and EmilyCatlin

Can I just quickly pick your brains please?  I am confused by some horribly conflicting advice I have been given and it is totally out of my out-of-date midwifery experience, as the hospital I worked at just did Nuchal Translucency scanning for every one, which the unit I am booked at does not offer.

I have been told the quadruple test will not provide a valid response for twins, or in pregnancies like mine, which were originally twins but where one fetus has not progressed beyond 9 weeks.  Apparently it is likely that as Twin 1 (which didn't survive) is still visible on scan at nearly 12 weeks and isn't making any attempt to be reabsorbed (apparently it is still growing which is a bit bizzare), it will still be having an effect on the hormone levels at 16 weeks which will affect the results of a quad. test and make them meaningless.

However, the hospital I am booked at who only do nuchal scans if it is twins, have cancelled my nuchal scan as they say they only offer it for twins, and not for a twin pregnancy where one is no longer viable.

Given that I am over 40 years old, that effectively means that they are offering me NO antenatal screening tests what so ever.

Is this right?  It seems a little odd to me, but I just wanted to check with you both as you are firstly much more up to date than my not-registered-anymore self, and secondly, the unit I worked at didn't do quadruple tests (or double or triple) anyhow but just routinely gave everyone a First Trimester Visit that included a nuchal scan, so I really don't know masses about them.

Just to add to the picture, the unit I am at do not do anomaly scans until 23 weeks... so although the midwife who booked me assured me that they can pick up even mild cases of downs on this scan (which I don't believe is true, but maybe things have become much more advanced since I was a midwife) if there is a problem I will be 23+4 before they find it.... which seems really, really dreadfully late.

Any ideas?

Thanks ever so for your help
Deborah


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## emilycaitlin (Mar 7, 2006)

Hmm, I can see your problem!!

I'm going to have to do a bit of asking round before I can give you any solid answers to your queries, unless Jan knows any more.

I think though, that I would be inclined to either insist on, or have a private nuchal fold scan just or you own peace of mind, but that's only a personal opinion.

I'm working a 12 hour shift tomorrow, and if it's a bit quieter than it has been, I will try and pin down a doctor and ask them.  I'll get back to you tomorrow night which ever way.

emilycaitlin xx


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## jan27 (Aug 19, 2005)

Hi Dobby

Congrtaulations!!

I think you need to get an early consultant appointment to discuss screening asap.  I think it is appalling that nothing is being offered due the circumstances you have explained.  

You are right that anomoly scans dont always pick up Downs and it is a bit late to find out at 23 weeks by the time you do amnio for confirmation it will be more like 26 weeks.

Looking at the resource cards, there is 6.2% false positive detection rate for quadruple test and 20% for nuchal alone.  Therefore the quad may be more help generally.

Have you thought about using the link for  antenatal screening as they may be able to offer more advice?

Hope that helps

Jan x

ps, another post has been posted whilst writing!!  hope we both help!


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## Dobby (Oct 23, 2005)

Thanks both ever so much for your advice.

I have never known so much conflicting advice - the unit I am booked at is supposed to be really good (it isn't my local one, as that is NOT supposed to be really good) but EVERYONE seems to have a different opinion on things there, and it is so nice being able to pick your brains as to what you think.....

I have to say I was fairly unimpressed when the news about Twin 1 no longer being viable was confirmed, and the ultrasonographer's immediate comment was that I no longer qualified for the scan at 10 weeks or the nuchal so to make sure I cancelled these on the way out!  But I didn't expect to then fall through the cracks and end up with not being offered any antenatal testing at all.... apparently the criteria for them doing nuchal scans is previous family history of downs, twins or diabetics only.

The quadruple test I have been told various things from 'it is a waste of time because it will only tell you if you have a problem but then we won't know which twin it is with and will have to do further tests to find out' to 'unfortunately, since the pregnancy was a twin one to start with this will mean we do not have reference ranges for the results, so we don't offer you the test'.

I sound like a real moaner, but if I am finding this hard (and I know I am out of date in midwifery terms but that doesn't mean I have forgotten everything I ever learnt by a long way) then how is the average first time mother supposed to cope?

I was also told by one midwife that as I am no longer considered high risk, it now being a singleton pregnancy that I now wouldn't need to see anyone until 24 weeks (so no appointments at all in the next 12 weeks then?) and 5 minutes later by another midwife that as the twin that had died was still growing (still trying to get my head around that) things were still high risk and I would need to be scanned and seen again in 2 weeks time!

Nice to see that their advice is consistent!

If you do manage to find out any more information on wether the quadruple test is valid for someone in my position of twin pregnancy with one non-viable fetus, I would be really appreciative.

In the mean time I guess I will book a nuchal scan privately.

Please ignore my ranting at my local unit... it is just kind of adding insult to injury if you know what I mean... I seem to be falling between the not quite a twin pregnancy and not quite a singleton pregnancy criteria.

Thanks so much for your help, can't tell you how much I appreciate it....

Dobby


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## emilycaitlin (Mar 7, 2006)

Hi,

I've had a chat with a screening midwife.  She say's that , as your unit have told you, the quadruple test wouldn't really tell you anything at all.

However, it would be worth having a nuchal fold scan, and perhaps something to have a long think about and dicuss with your midwife/dr is to have an amnio if you are very concerned.  Make an appointment to see your consultant (keep on at the ante natal clinic to get one) and see what they say.

Sorry I've not been of more help,

emilycaitlin xx


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## Dobby (Oct 23, 2005)

Hi emilycaitlin 

Thanks for this - this confirms what I thought, but I do think it is quite bad that if the quadruple test doesn't tell me anything, then by cancelling the NHS nuchal scan they effectively mean that they are not offering me any screening test what so ever, even though I am above 40 years of age!

I have now booked a private nuchal scan, and in the general scheme of things given that we have spent a fair few thousand on 2 IUIs and 2 ICSIs, the extra £200 or so seems a mere drop in the ocean - but we are very lucky to be in that position.  Many people in a similar circumstance perhaps wouldn't be so fortunate and would just be left without any tests available to them.  Rather against NICE guidance don't you think?

The Consultant who is going to carry out the private nuchal scan is actually the consultant who has a special interest in Antenatal Screening at the unit where I am booked - I think if it comes up in discussion during the appointment I may well point out that the situation I am in is a gap in their protocol and that perhaps an allowance should be made to ensure that people who are in the same position where a pregnancy was initially twin but one fetus hasn't progressed, should be offered a nuchal scan on the NHS, if the quadruple test is uninterpretable in such cases.  Obviously I would make it clear that this was a constructive suggestion rather than a complaint, but it may help the next person who is in the same situation.

Do you think this would be a sensible thing to suggest?

Thanks for your help

Dobby


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## jan27 (Aug 19, 2005)

Hi Dobby,

I do think you should put this in writing, as with anything in the NHS, if they dont know about it officially they wont do anything about it. Perhaps send them the copy of the bill too!!

Defiitely talk to the consultant and you never know you may get your money back.  Down here consultants have been twisted to do occasional nuchals on high risk women even though not done on the NHS at all here. 

Good luck

Jan x


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## Dobby (Oct 23, 2005)

Hello

Just thought I'd let you know what happened!

My community m/w gave me the name of the antenatal screening co-ordinator, and I rang her yesterday and explained the situation.  She was most sympathetic, and said that rather than anyone just cancelling my nuchal and extra scans etc once they found out about Twin 1, the case should have been referred to her.  She then said she would discuss with the Consultant who carries out the screening, who is by chance the same consultant who I had booked to see privately tomorrow.

The screening coordinator rang me back to say the Consultant agreed that my Nuchal should not have been cancelled, as the quadruple test is (as we thought) not clinically appropriate because the fact that my pregnancy still qualifies as a twin pregnancy even though one twin is no longer viable, then they have to offer some form of screening, and I WOULD therefore qualify for a NHS nuchal.  The screening coordinator explained to the consultant that I had already booked a private appointment, at which point the consultant arranged for this to be transferred to the NHS, but will include the blood test I have already have had as well - and is going to see me tomorrow!

The screening coordinator is also going to make sure that the protocol for screening of twins and offering nuchal/quadruple tests clearly states that if the pregnancy started off as twins (or more) then a nuchal should still be offered, even if only one fetus remains viable at the time of the nuchal test.... so hopefully noone else should have this palaver to go through!

And in addition, the Consultant who is going to scan me tomorrow is also going to take a look at Twin 1 (the non viable one) and try to work out why on earth it is still continuing to grow, which is a bit of a concern for me at the moment - and will probably arrange more scans to continue to monitor this.


So a bit of a result all round really, the screening coordinator could not possibly have been nicer..... 

Thanks ever so much for your help with this, very much appreciated.

Dobby


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## jan27 (Aug 19, 2005)

What a result!  Well done...

Good luck for scan tomorrow, keep us informed

Jan


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## emilycaitlin (Mar 7, 2006)

Good, I'm really glad you got it sorted.!!!


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