anyone had c.v.s test

[inlovewithjose]

hi, ive just had 3 month scan and am in high risk for ds. hospital have suggested c.v.s test but has 1% chance of miscarriage. has anyone had this test. would really appreciate your experience.

[PatsyCline]

Hi,

I had one two and a half years ago as my daughter was diagnosed (when I was 16 weeks) with an exomphalos and this carries the risk of a chromosonal disorder called Edwards Syndrome.

I found the test ok - I had always dreaded having one, but it was over in a few minutes and felt uncomfortable rather than painful. I felt that I wanted to know as much as possible about what the future might hold for my baby.

I'm really sorry that you're having to go through this at a time when you should be able to just enjoy being pregnant.

Anything else you need to ask, please feel free.

Patsy x

[inlovewithjose]

thanx patsy, i know its awful, im really confused and it has ruined my pregnancy. i want to know for sure if baby ok so will probably have c.v.s but think i will kill myself if i miscarry due to test ! will keep u posted. x

[pinkrangerstartstowaddle]

i had this done 5 years ago with with DS as they thought he was DS. I must say that i had my done at Kings College in Denmark Hill and i had the top professor in Neo natal care perform it so i was very reassured about this. The procedure didn't last that long and was a little uncomfortable but felt fine afterwards.
I got the results back in 4 days and they were good.

Hope with whatever you decided it goes well.
Good Luck

[inlovewithjose]

thanx pink, my test will be carried out at st.georges hospital tooting a major teaching hospital, so i feel ok about that, still sick with worry though. x

[PatsyCline]

Oh, I really wish that I could do something to help.

The only way that I coped psychologically with having the test was to refuse to think about the future until I got the results (I know that is terribly hard).

Also, if you feel that it is best to have the test then try to focus on the very good odds against a miscarriage.

I'm sending you lots of love and a big cyber hug.

Patsy x

[buzzybee]

inlovewithjose, I was offered this test or amnio after getting 1:21 risk rating for DS. I really struggled to know what to do but in the end decided the risk of miscarriage was too high for me and refused the tests.

I am now 24 weeks and am reasonably philosophical about what might be. I have come to terms with the possibility of ds and I know that I will love my baby regardless.

A key deciding factor for me was that the 19 week scan showed no other major defects (like heart defects) and I feel I would not terminate for DS alone anyway.

You are not required to have these tests - they are your choice. I understand that many people want to know for sure and that's perfectly rational but in the end I kind of felt I didn't want to know because then I'd really be forced into making a decision IYKWIM. This way, what will be will be (and it is only a 5% risk after all).

I would also say that you should do what feels right for YOU (and your partner if you have one - I don't BTW!) and don't pay too much attention to what other well meaning people say they think you should do (usually put in terms of "if it was me, I'd....") - I don't think anyone can say for sure what they'd do until they actually experience this. If you'd asked me before I was have said I'd have the amnio for sure!

Sorry this is very long and I'm risking turning into one of those other well meaning people I was just dissing

Loads of hugs {{{{{}}}}}

[violeta]

Inlovewithjose: You don't say what your risk factor actually was? Work it out as a percentage rather than the one in such and such figure and that may also help you to see the figures in proportion.

Do you actually have to go for a CVS now or could you wait till the time frame for an amnio? The latter carries a smaller risk of miscarrying as a result as well.

I was taken through the wringer after my blood tests came back as 'borderline high risk' and the hospital have offered me a detailed scan (seemingly an extra and earlier anomaly scan) at 17 weeks. That will pick up on 'markers' that will or won't indicate chromosomal conditions and give us more information before deciding whether or not to go for further tests. But, after reading up on the blood tests and how unreliable they can be (the results would change if you had them done yesterday or tomorrow) and the nasal bone research, I feel reassured. There's lots of information available which is well worth reading up about.

I would suggest also finding out what it was that put you in the high risk category and finding out about what that could mean as well. For example, a high HCG level will skew the results but doesn't necessarily mean anything on its own.

There's also an organisation called ARC that advises women about antenatal tests. They could be worth contacting and would give you independent advice.

Wishing you all the best.

[magnolia1]

I am not sure if this is going to help but my sister in law had a c.v.s test last year and sadly miscarried the baby the results came back negative which was a double blow for her. She is now expecting again and due in Dec.
From her point of view she now says she would not have it again unless she was sure she would terminate if the results came back positive.

[inlovewithjose]

thank uou all so much for your support. my risk of ds is 1 in 87, and risk of mc is about 1 in 100. please dont judge me but i really dont think i could cope with a ds baby, im just not a strong enough person. i really appreciate your advice and i am getting alot of strenght from it, sorry for being such an idiot, never faced a decision like this before. lol x x

[violeta]

Inlovewithjose: Oh, it is all so difficult isn't it? I know what you're going through.

Despite your figure, still consider that you have a 99% chance give or take a few decimal places that your baby is completely healthy. I do wish hospitals would give the results in this way rather than the 1 in figure as it does seem to affect how we see things.

Do you know whether your actual hormone levels were high or low?

I would generally find out as much as you can about your situation before you go ahead with one decision or another. Can you get a meeting with your consultant to talk it over, perhaps, if you haven't already?

[inlovewithjose]

hi violeta, have had nothing but the 12 week scan. when i was given the results i was told i had to be seen by another midwife who then explained the ony way i would know for sure if baby ok was an invasive test. cvs is performed earlier than amnio so i thing thats its "selling point" if you like. i dont think i could wait until 20 weeks and then find out something wrong, by then baby kicking and everything. just so bloody confused! cant bond with baby or anything.

[neuroticlady]

inlovewithjose, sorry to hear you're faced with this dilemma. It's horrible and it really does take the joy out of your pregnancy, doesn't it? I had a 1 in 52 risk of Downs a few weeks ago and like you, right or wrong, we knew we couldn't face the prospect of a Downs baby. So we knew we had to go ahead and have the test to get it absolutely ruled out.

My advice to you if you go ahead is to make sure you're getting a top notch doc to carry out the procedure, at a place with a great record statistically for it, as that can make a real difference to the outcome. They told me that they wouldn't proceed on the day if the baby was lying awkwardly or anything.

What happened was this: They used ultrasound as a guide and put a local anaesthetic gel on my tummy before inserting a long needle in - and I really didn't feel anything, although I was incredibly nervous about it and expected it to be awful. I wasn't so much worried about the pain for me, more worried about it causing me pain that would make me jump while they were trying to guide the needle. But I really didn't feel a thing. And I just concentrated on taking deep breaths. They drew a tube of fluid out and then it was all done in about a minute and they let me lie there and take it easy for a few minutes, then I went home and rested up for a couple of days. We paid extra to get the results 'fast tracked' to us within 48 hours as the standard wait is about 11-14 days which would be excruciating. Those initial results rule out 90% of all chromosomal abnormalities they look for so if you can afford it I do think it's worth paying the extra, just for the peace of mind. Our results came back normal, thank goodness, so of course I think it was worthwhile and I'm glad I did it. Had the outcome to the pregnancy been different I would obviously not feel this way.

Good luck with it and just ask away if there's anything else I can help you with.

[inlovewithjose]

oh neuroticlady thank you so much, i think you have given me more info on proceedure than my hospital!. so glad it all went well for you. do you know if you were to mc how long after test this would be, as getting conflicting advice on this, anything from within 48 hours to 2 weeks!

[Anchovy]

I had a cvs with my DD. The results came back as higher risk than even a "standard" 39 year old.

I had mine donw by the head of obstetrics from UCM. He was great. He had been doing it for 8 years and had never had a miscarriage.

The procedure itself is not painful, although I found it emotionally draining. I was told to spend a couple of days in bed afterwards and to expect some spotting. I was fine, no spotting and the baby was fine. She is now a delightful 3 year old with wild curls and a lot of opinions!

Good luck!

[neuroticlady]

Really glad if you feel this has helped you, inlovewithjose. You just want details of what to expect, don't you? Yet that often seems really hard to extract from medical people!

The leaflet they gave me to take home afterwards said to watch out for strong cramping within 48 hours of procedure. Dull ache was normal; strong cramps not. I had very mild cramping on and off for 24 hours or so but nothing to alarm me. If you're really worried why not see if you can go to your midwife maybe three or so days after for doppler heartbeat...? Though you really should be just fine and no cramping should mean good news so don't expect the worst. Just take it easy and look after yourself.

[kelmcd]

re misc - if you are going to misc because of the cvs it is usually within the first 48hrs following procedure however if anything happened up to two weeks they would attribute it to the cvs. no-one knows if you would have had a misc anyway with or without cvs. IYKWIM Hope that helps alittle

[Brangelina]

I had a cvs at 12 weeks, like you I couldn't cope with the idea of a ds baby. I had mine done at the best teaching hospital in Milan and the professor there said that although risks were 1% he had not lost a baby in more than two thousand operations.

The procedure itself was exactly as Neurotic described (like her I didn't dare breathe in case I moved!) and I took the following day off work as well to rest just in case. I had no spotting nor any problems whatsoever, just a slight "pulling" sensation immediately afterwards.

I would personally recommend a CVS as opposed to an amnio as if (God forbid) there should be anything wrong, you can have a therapeutic abortion so much earlier and thus avoid the angst of having a later induced abortion. What did it for me was that here the amnio is done at 18/20 weeks and you don't get your results before 22wks, by which time you might have felt the baby kick....

[inlovewithjose]

thank you so much everyone, i will have cvs and just hope for the best. i know its 1 in 100 chance of mc but that also means ive got 99% chance of being ok, so will take the risk. will let you know how i get on next week, appt booked for monday! thank you all so much. x x

[neuroticlady]

Keep those odds in mind, inlovewithjose, they're stacked in your favour. Good luck.

[legalalien]

Yes, best of luck.

I was scheduled to have a CVS as I have a severe genetic condition with a 50/50 risk: they discovered when I turned up for it that the dating was wrong, and I was three weeks more pregnant than I thought - so I decided to wait another week and have an amnio (lower risk). Due to problems with the amnio sample I didn't get my results until 24 weeks. With the benefit of hindsight, I'd definitely go with the CVS. The amnio feels very late in the piece and it's quite soul destroying waiting so long - and also difficult if you are hoping to keep your pregnancy "under wraps" until you have the results of the test.

One other thing I'd say, is think about what you are going to do immediately after the test - I was on my own for the amnio and pretty much went into shock afterward - spent two hours in the clinic waiting room basically shaking (very kind nurse taking time to make me very sugary cups of tea) - although the procedure doesn't involve pain it is a very emotional one.

[PatsyCline]

I'll be thinking about you on Monday.

Patsy x

[blueshoes]

Another one who had hers done at Kings College. I was told the risk of miscarriage was 1%. Procedure was carried out by a doctor who was doing it for the first time (!) but overseen by the Professor. After the procedure, there was much clapping, erm for the doctor. And he told me there and then it was successful and no risk of miscarriage - I don't know how he knew.

Well, I was fine. Baby is fine too, now dd 4 years.

[inlovewithjose]

oh wow ! thanx blueshoes, the good news stories just keep getting better. you dont know what this means to me, feel so much happier than i did this morning. anyway off to pick up ds from school, one day i'll get carried away on here and forget to pick him up!

[designerbaby]

HI inlovewithjose,

I might have missed the boat on this one (just got back from my forst antenatal class - so you know mine has a good outcome so far!) but I thought I'd add my two-penn'th...

We has a very scary 12 week scan - similar to Patsy they diagnosed an exompahlos (wrongly, as it happened) and significant nucal thickening which they said gave us a 50% chance of a baby with Edwards (which has a 'not compatible with life' prognosis) and offered us a termination on the spot.

We asked for a second opinion and/or further tests and were refered to another hospital with a specialist fetal medicine unit, (the Homerton in Hackney, who I can't praise highly enough for they way the handed the whole situation).

They firstly did a further scan, and while they couldn't see the exomphalos (although they said they couldn't be 100% that it WASN"T there) the nucal fold reading was significantly higher than average and gave us a 1:50 chance of a baby with Edwards, Downs or other chromosomal problems.

The consultant then offered us a CVS. He said that it did carry a risk of miscarriage and that the official figure was 1:100, but that in his opinion it was likley to be much lower - and that babies who did miscarry following the procedure, he felt, were more likley to have had a problem which would ahve resulted in miscarriage anyway. He stressed that this wasn't the 'official line' but his opinion as a fetal medicine consultant of 20 years experience.

He said we needed to consider both what we would do with a positive result for a chromosomal disorder, but also whether we felt we could relax and enjoy the rest of the pregnancy not knowing for sure whether there was a problem.

We had, by this point, had 3 days of living hell, thinking that our baby was probably not going to live and I, personally, couldn't imagine going another 6 months not knowing - so for us it was a no-brainer: frankly I was in bits and needed to know one way or the other.

It was a slightly easier decision, maybe, because we had been looking at Edwards, and that was our primary concern and we knew that such a baby couldn't survive for long in any case. I don't know if it had "just" (I know one can't say 'just' but I hope you understand what i'm trying to say) been downs whether that would have made a difference.

We decided to go for it - and the procedure itself was absolutley fine. The most pain I felt was when the local anaesthetic needle hit my perineum and I jumped a mile (conultant just very calmly and poiltely asked if I could TRY not to move) but after that I felt nothing at all. The CVS needle is very long and scary-looking - so I chose to look the other way - just seeing DH's face as it went in was enough to convince me I didn't want to see! The whole procedure took a matter of minutes.

I was told I should take it easy for the rest of the day - but more because of the emotional strain I'd been through, rather than anything else, and otherwise to carry on as usual- and not to take bedrest as this would acually be counter-productive. I had no cramping or any other side effects at all.

We were told to expect the first results (for the 3 'main' trisomies - Down's, Edward's & Patau's) within a week and the rest after a coupe of weeks (they have to culture the sample and wait for it to 'grow' before being able to test for some things.

In actual fact we got the first all clear after 3 days (without paying a penny, BTW) and the rest after 2 weeks. It WAS the longest 3 days of my life, mind you, but very quick in the scheme of things.

You do have to think through the consequences, but also take into account how you're feeling, and how you'd be likley to handle the uncertainty for another 6 months if you chose not to go ahead with the test.

I wouldn't recommend waiting for an amnio, as the risks are similar, and I don't see the point in waiting until you're 20 weeks pregnant, by which time you're already feeling movements and also possibly LOOK quite pregnant. You have to make the same decisions, but I think they would be a lot harder to make at this point, and the ramifications more extreme.

I would recommend you speak at length with the consultant before having the test - get him/her to do a further detailed scan first and give you their opinion - and then take it from there. Bear in mind that just because you have the appointment, doesn't mean you HAVE to have the test... you CAN change your mind at any point.

I'm now 33 weeks with an apparently healthy baby girl who kicks the hell out of me all day and keeps me awake most of the night - and, (sleep deprivation aside) couldn't be happier. The odds are very much in your favour that you'll be similarly fine - so keep that in mind too. Pointless to say not to worry - but try of you can to look at the odds you have, and the fact that you'd probably stake hard cash on them quite happilky if they were offered at the grand national...

Sorry this is such a long post - I just know how desperate I was for any information when I was in your position, so I hope this helps.

Let us know how you get on?

Big hug,
DB
xx

p.s. Bonus is you get to know for definite what favour of baby - pink or blue - you're going to have... if you want to know, that is!

[inlovewithjose]

db, thank you so much for taking the time to share your experience of cvs with us, the more info i get the better i feel, i really cant thank you all enough. x