Should I have CVS?

[MarEl]

Hey everyone. I had a scan on Friday (11+6), which showed one of my babies has a bit more fluid than is expected (I think on the neck), so I've been advised to have a CVS.

I'm worrying because, obviously, the risk of miscarriage is higher with a twin pregnancy and the thought of them prodding a needle into my belly is making me feel very nervous about it.

The thought of something being wrong and me having to abort one of my babies is also making me nervous and scared. I'm trying to think positively about the pregnancy at the moment, but I've never been advised to have a CVS with my previous pregnancies, but inside I'm a complete nervous wreck.

Can anyone give me any advice, please? x

[Plateofcrumbs]

If that's all the information you've got, then you need to contact your hospital and get them to go through your results in more detail and explain the risks and consequences.

No-one can tell you whether to have a CVS - it is your decision.

I have had a CVS but I genuinely don't know how different it is if you are pregnant with twins, and also what your options are if you receive bad news. You say "abort one of your babies" - is this even possible? Without wanting to be blunt I would have thought it was all or nothing.

You need to better understand what your results mean, what your risks are, what options you have and what you would do if you received bad news.

Good luck and sorry you're going through this - I wouldn't wish the fear and uncertainty on anyone, and I'm sure contending with a twin pregnancy just magnifies the risks and worry further.

[gunwalloe]

Hi sorry you've got this dilemma have you heard of the harmony test? Its non evasive the information is below.
www.fetalmedicine.com/fmc/03-harmony-test/

[Christmascandles]

I'm sure there will be someone along soon who is more knowledgeable than me but in the meantime..... Did you have any other markers? What was the actual risk put at? Was the scan done in conjunction with bloods? I think you need a lot more information before you decide. How much was a bit more...?

Would you necessarily have an abortion if your baby was Down's syndrome? And I'm sorry I don't know how that would work with twins....

Can you talk to your midwife at all

Thinking of you as it must be such a worry

[Plateofcrumbs]

gunwalloe I'm not sure the harmony test would work in the case of a twin pregnancy. Equally I'm not sure normal blood tests work either. But OP needs to confirm this with HCPs, I'm just speculating.

[Plateofcrumbs]

Also to add that I felt totally overwhelmed when we were initially recommended to have a CVS. I went away to think about it and wrote down a list of questions I had then phoned the hospital and went through them all with a midwife, writing notes. It helped me a lot - some of it was just going through what we'd been told initially but had been too shocked to take in.

[MarEl]

I'm not getting the information that I need. The doctor said they will do the CVS with both babies seperately, with an ultrasound whilst they're taking some tissue or something. I don't understand why when the abnormality was just with one baby, apparently. I don't really understand what's going on, so I don't know whether to just have it and go from there, where I might understand more when I get the results.

Another thing is, the doctor said I'm at higher risk of chromosomal disorder, that is Down Syndrome, isn't it?

I'm sorry if you're confused, I'm totally confused too.

I know it's my choice, but I'm not very good with choices. I'm worried I will have a miscarriage as a result, the chances mustn't be high, but it's still a worry to me.

Should I just ask for a second opinion? I'm just entirely confused and stressed out over it all...

[gunwalloe]

Op ive seen many people say fantastic things about Arc perhaps they can help you?
www.arc-uk.org/

[MarEl]

I've don't know how abortion works with twins either, but I presume it's possible. Maybe, it's not... I don't know. I feel awful about even thinking about abortion if there is a problem, it's not something that I feel to be right but I just really couldn't cope with a baby that is hard to look after and I wouldn't be able to provide a life that it deserves. I guess, I'll cross that bridge when I come to it, as it could all be fine

The whole thinking it over thing is just totally stressing me out. I hardly slept last night because I was worrying.

[MarEl]

I'll have a look at ARC, thank you for the link. x

[Booboostoo]

MarEl your doctor sounds awful! He/she should take the time to help you understand what is going on and the options you have! Don't be steamrolled into this, insist on understanding the information before you make a decision.

Was your scan between 11 and 13 weeks plus 6 days? Did you have blood tests done? This is part of the test irrespective of whether you are carrying a singleton or twins. You are then given a statistical probability of an abnormality. A number of 1:150 or greater is concidered a 'positive result' for which CVS or amnio is recommended. The nuchal test is a screening test, it doesn't give you a diagnosis, it gives you a probability. The CVS or amnio are diagnostic tests they will give you a definitive answer.

If the twins share a placenta they will be equally affected. If they do not, one twin could have a positive result while the other does not. It is possible to terminate one twin but not the other, although the procedure carries more risks of miscarrying the second twin.

THe tests refer to three chromosomal abnormalities:

• the posibility of Downs syndrome (Trisomy 21), which is a diverse condition and you won't know how severly the baby may be affected by it from these tests.
  
• Trisomy 18, Edwards Syndrome, and Trisomy 13, Patau syndrome
  

are both very severe conditions, which cause multiple problems and babies are likely to be MC or die within a few days of birth.

The last things to keep in mind is that the NT scan has a 5% false positive possibility, the new Harmony test has a lower false positive chance at 3%. A CVS or amnio has a 1% possibility of causing a MC. There is little reason to consider a CVS/amnio if termination is not an option for the parents - all you get is information, not treatment or prevention, although with a twin pregnancy if one foetus is affected it may be more likely to MC and affect the viability of the other foetus.

[LuckyAugust]

Sorry to hear you're going through this. Have you looked on the 'Antenatal tests/choices' section. I know before mine last month I read some threads within this topic that may be useful to you. I'm not so sure about the % risk if expecting twins but I know after mine the Genetics Consultant said it was actually much much lower than the quoted 1-2% in single pregnancies. Wishing you lots of luck x

[toddlewaddleflipflop]

I can really recommend ARC too. I rang them in a complete panic and they helped me work out what was important to me, gave v useful and up to date info and I felt much better after the phone call. Still a tough decision to be made, but they reassured me that eventually I would come to a decision I was happy with, and they were right.

[willtheyeverusethepotty]

Hi Op. I had twins - the blood tests don't work for twin pregnancies, and I'm not sure about harmony either, you will need to ask (FMC?) to double check.

Om my following pregnancy I did a CVS and there was a problem, so I'm glad I had that confirmed. But what makes they think you have a high chance for any chromosomal problems?

For someone who asked if you could abort one baby, yes you can, it's called "fetal reduction" but it's also done by an injection on baby's heart (sorry tmi). Naturally, the type of twins you are carry is important in this case, so ask about that too.

Good luck with whatever you decide to do.

[Plateofcrumbs]

Sounds like it might be a good idea for you to speak to ARC first, get a better understanding and then recontact your hospital/consultant to talk through your own results in more detail when you better understand the context.

If they're talking about fluid on the neck that sounds like a Downs Syndrome marker - they take a measurement and higher measurements are associated with greater risk of Downs but it's not conclusive in itself. You're generally given an indicator of risk (1 in X) which tells you, based on your results, how likely it is the baby has Downs. Our hospital automatically suggests a CVS for anyone with a greater than 1 in 100 risk - so in that case still 99 in 100 chance the baby does not have Downs. But its possible to get results as high as 1 in 2 or 1 in 3. So it's really important that your consultant gives you some indication of the risk, because 1 in 100 is really very different to 1 in 2.

The 12 week scan can also pick up markers for other chromosomal abnormalities in addition to T21, T18 and T13 that have already been mentioned (we were flagged as a risk for a rare disorder based on the configuration of the major arteries round the heart). A CVS will include screening for a range of other abnormalities so you do get that reassurance of having had the 'full MOT' as it were, but it comes at the cost of the risk of miscarriage.

The main reason for saying it is your decision is that you have to live with the risk of miscarrying, and you have to live with whatever outcome you get. Although some people would consider testing 'just to know' even if they wouldn't consider termination, I think most people who would not consider termination would not get the test. In part it depends on your risk factor (what are the odds of a chromosomal abnormality vs. the odds of miscarriage?) and in part it depends on how you would handle the 'worst case scenario'.