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choroid plexus cysts picked up at 19 wk scan - anyone had experience?

18 replies

sylvester · 03/08/2003 21:23

Hi. I went to 19 wk scan on Friday. Everything went ok I thought until the midwife said that a choroid plexus cyst had been noted on scan. She tried to reassure me that these are not uncommon and often disappear by 26 wks with no harm to baby. But sometimes they can be a 'soft marker' for links to conditions such as downs syndrome. I have been referred for another scan with a consultant who will investigate further and maybe advise on amniocenticis. I am very worried and thinking the worst. Got to wait until next Thursday for scan so if anyone out there has experience of this I would be very grateful to hear from them.

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MBB · 04/08/2003 13:12

No experience of this myself but think this is what my friend was told after her 20wk scan. She was also v worried and found it difficult to find info either in books or online. The only thing she found in the end was a v technical (medical textbook sort of thing) American website that wasn't much help anyway. Her midwife reassured her that it was not uncommon but didn't really have anything more constructive to say. Anyway, my friend also had a 26wk scan and by then the cysts had gone completely. She has now had a healthy 8lb baby who is thriving. hope this helps. Think calming thoughts!

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elliott · 04/08/2003 13:39

As with MMB, a similar experience happened to a friend of mine. She had a further scan but turned down amnio. Babe was fine and now a healthy 9 year old boy, but her pregnancy was made unnecessarily stressful.
Personally it makes me very angry when units start screening for these 'soft markers' without giving adequate information or counselling. When you go for your next scan make sure you write down all the questions you have - the consultant should be able to give you proper information about the probability that there is a problem - it is usually much lower than you imagine.

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alison222 · 04/08/2003 14:16

Yes - one was picked up on DS scan at 20 weeks. Had to go back to see the consultant who said that all these markers would disappear so there is no point in doing a leter scan. based on the size of the cyst they reappraised my chance of having a baby with downs to be up form something like one in 550 to one in 350 or something like that. from what I understood (did lots of web searches too) If there is another genetic problem then there would be other problems which would be seen on the scan and then they could say that it was indicative of something else. I was offered amniocenticis but since the risk of having a miscarriage was higher than the risk of having something wrong with my baby I declined.
DS is now a very healthy 2 1/2 year old. I think that if they had seen any other problems you would have been told of them at the same time so try not to worry too much until you have heard what the consultant says.
I know its impossible not to worry but i hope that my experience might reassure you a bit before you go back on Thursday - do let us know what happens won't you?

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sylvester · 04/08/2003 17:20

Thanks to everyone for their reassuring messages. I feel much better for reading them and am likewise sure that the scan would have picked up if there had been any major problems. I have done some research on the internet and found a few websites with info on cpcs. Apparently cpcs can be associated with a genetic disorder called Edwards syndrome but apparently this is very rare and usually other major problems would also show up on the scan. I feel sure that like yours and your friends experiences that these probably will disappear and do not mean anything sinister. I will wait to see what the consultant has to say on Thursday and be positive that I have a thoroughly healthy baby growing inside me. Fingers crossed. I'll let you know.

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pumper · 23/01/2008 20:01

Has anyone recently had a 20 week scan wher ethey told them about a choroid plexus cyst, with no other markers? what did you do?

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pumper · 23/01/2008 20:01

Has anyone recently had a 20 week scan wher ethey told them about a choroid plexus cyst, with no other markers? what did you do?

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cezmay · 01/02/2008 10:11

I had 20 week scan yesterday (31/01/08)
and was advised that my baby has one choroid plexus cyst. I had my blood screening a month ago and no amnormalities where found. Everything else was fine with the baby, no other problems at all. But when he told me that i should think about having further investigations ie: amniocenticis, i got very upset, and felt very alone. But now i have looked on the net and checked up on things, my mind is a little more at ease. Because i live in spain, and my spanish is not great, it is harder to find out more from the doctors. I have another scan on monday (04/02/08) with my doctor and we will go thought things, but i dont think i will go for further tests, im not going to change my mind in having the baby so what is the point of putting me and my baby through more stress, when there could be nothing wrong. But thats not to say that im still very worried in the back of my mind. I will let you know how i get on on monday! Try not to worry, i know its very hard to say.

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Diege · 01/02/2008 13:02

Just to say that our local health authority no longer reports these if seen in isolation (same with renal dilation) because they rarely signify anything 'sinister'when no other soft markers present (and even then, usually of no significance). I'm actually doing an NHS-funded research project on screening and perceptions of risk, and the mose recent research I've found suggests no longer adjusting the risk stat for these cysts for DS chance, as there's no clinical evidence to do so...In fact, they tend to be linked (ONLY WHEN SEEN WITH OTHER MARKERSD) to Edwards' syndrome more than DS. Consultant I interviewed recently told me they're now starting to be treated as part of normal foetal development. Hope this helps a little

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blueshoes · 01/02/2008 13:16

Sylvester, my dd had 2 CPCs detected at the 13 week scan. Because she was also small for dates, I was advised to have a CVS - it was clear for Downs, Edwards and other major chromosomal abnormalities.

It transpired from subsequent scans that dd had lots more soft markers for god knows what - but it was certain she had a heart condition. Her CPCs were all but forgotton.

I think they were still present at birth, but the hospital was not interested to follow up, in the light of her other conditions.

The short answer is I don't think CPCs in isolation are significant. It is a normal part of brain development. My dd was IMO slowish to hit certain developmental milestones like talking, but at 4.6, this is not an issue at all. Don't know if there is a link but she is now bright as a button, a real diva.

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NAB3wishesfor2008 · 01/02/2008 13:28

I had this as well as cysts so 2 markers that may have meant Edward's synddrome. I refused all tests and agreed to extra scans. He was fine in the end (had other probs but nothing to do with the choroid and cysts)

Do you know if the baby is a boy or girl?

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StripeyKnickersSpottySocks · 01/02/2008 14:18

When I was pg the 20w scan showed choroid plexus cysts but no other soft markers. As no other markers there was no follow up or repeat scan. Everything was fine. They are quite common.

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mumofk · 01/02/2008 14:50

Hi, just to second what Diege said about CP cysts- we count CP cysts as normal development if seen in isolation, but also wanted to add that the earlier you are- i.e. 18/19 weeks they are also much more common. Even 2 weeks later they may not be visible (but if somewhere is bothering to rescan to check specifically for them, rather than looking at all of baby again in more detail, it would make more sense to leave it longer to give them chance to dissapear).
Hope all works out well for you.

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cezmay · 01/02/2008 16:43

Thanx for all your messages, they are very comforting. But i did leave one thing out, i did not say that my sister was born with downs syndrome, do you think my chances are alot higher! My blood tests for testing downs came back fine, but now when i think about it more, i start to worry again. Ive looked at a few websites and some say that there is a low percentage of people who can carry the same gene as there sister/mother. My sister was born 11 years after me, so there is a big gap, i think my mum was about 35 or 36 when she had her, but she was not offered tests, like there are now. Do you think im worring to much or should i just go for the amnio test!

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Diege · 01/02/2008 16:50

CEZMAY, I'm not an expert, but I think DS is a random occurence, and that people don't carry a 'gene' or are more pre-disposed from having relatives with DS? My friend's brother (who gave me driving lessons!) has DS, and she was told she wasn't at any higher risk. I think you are very slightly if you've had a child with DS before (though not sure why if it's random), but I think you might be worrying unnecessarily

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cezmay · 01/02/2008 16:54

Thanx, it so hard, when you live in a different country, all you can rely on is internet and words of kindness from friends, but and this site is really helping me. Thanx

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Bella2 · 01/02/2008 19:40

Hello,

Just wanted to say that I have been for my 19 week scan today and was told that there was a CPC visible - I'd never heard of these before and, although the Dr told us not to worry, we are worried. They were no other markers present, but we have been advised to have a further scan next week. It was been a big help reading that other people have experienced this too and that, in isolation, it may mean nothing. I guess it's comforting to know that we're not alone!

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cezmay · 04/02/2008 17:03

Hi,
Had a follow up scan today with my doctor and he told me that there is no need to worry and that i will not need an amnio test.
I will be having another scan in 3weeks time. He also said that the cyst will disapear within time and no need to worry. I spent all weekend worrying about nothing, but im glad a done some research on internet, it helped alot.

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DonutMum · 16/03/2008 21:32

Hiya. Also had CPC show up on our 20 week scan but sonographer v careful checking everything else and nothing showed up - perfect hands, feet, heart, face (apart from DH's nose!) and it was a 3D pic we got so he looks just fine. Am seeing the consultant week after next in the hope that we'll get a 32 week scan on the NHS (the others have been at the FMC in Harley Street which is fab but I'm skint now). I think it's all fine really and have read up lots on Edwards syndrome, which apparently affects girls more that boys. My NT tests and bloods also gave very small risk and I've even done a calculation on the ratio of the head measurements to see if his head is flat at the back (it isn't). Diage's post has also made me feel much happier. Thanks!

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