Two soft markers at 20 week scan...

[worriedamy]

Hi

I was hoping for some advice from someone who has been in the same situation we are in at the moment. I am 23 years old and we went for the 20 week scan on Friday. They picked up two soft markers- choroid plexus cysts and echogenic foci. From this they told us that we have a 1 in a 100 chance that the baby will have a chromosomal abnormality- notably Down's Syndrome. We chose not to have the serum screening at 16 weeks because we decided we would not terminate the pregnancy if anything was picked up- so instead of worrying if it came back high risk, we decided not to take the test. Now we have this worry anyway, and I dont know how I am going to cope for the next 20 weeks not knowing what to expect. I dont feel like I can prepare myself if our baby is going to have any of these abnormalities because I dont feel that we have enough information, but I have totally stopped enjoying my pregnancy and just worry all the time. The only option the hospital have given us is an amniocentesis, but both my partner and I are really reluctant to do this knowing the risks.

Its really difficult to find any research on baby's who have two soft markers on the ultrasound... all research says to pretty much dismiss one of the markers, but doesn't really say anything is two are found.

I would be really comforted to hear from people who have been in the same situation as me and have gone on to have healthy babies???? Please help, I cant seem to get any more information from anywhere...????

Hi Worried! I have pretty much been in your situation in all of my previous pregnancies, and have never had a 20 week scan that hasn't revealed 'markers' (all turned out fine). I also had my 19 weeks scan last week with no.4, and choroid plexus cysts were reported. I know what you mean about two markers (stop googling!!!) but the actual two that have been found on your scan are very, very common. Even though I was scanned in England, I'm from Wales and know that the national guidelines for antenatal screening wales (guidelines for ultrasound) no longer (since 2004) report the markers you see, even if seen in together(I think I'm right there). The guidelines can be googled, but I can't do links!!
We also chose not to do screening this time (and I'm 38) as wouldn;t terminate for ds. I know how difficult it is not to worry, but there are 99 out of 100 chances that everything will be fine. Plus if you welsh you would have had a 'normal' scan result! I rang ARC (antenatal results and choices) to talk through my findings, and they were brilliant. Strongly recommend you give them a call. Take care xxx

Did the hospital give you the number for an organisation called Arc (or ark)?

I've not used them myself but heard good things about them. They seem to have like a helpline for soft markers or something.

Our lo has 2 choroid plexus cysts and we were really freaked out at first and got referred for a second scan at university college london hospital where the sonographer was really nice and reassuring.
We're convinced the baby will be fine.
There I was totally reassured that they usually disappear around week 28, sometimes they do not disappear and still do not have an impact on the baby's development.
We refused any invasive tests like amnio because of the risk.

I'm afraid I do not know about the other marker.

I searched for choroid plexus in the mnet "search talk" it should come up with other people's posts about their experience.
I remember reading the stories of several people who had more than 1 soft marker and went on to have healthy babies.

Notably someone who ended up with one in 2 chances of having a baby with an abnormality and still had a healthy baby.

Obviously 1 in 100 is not great but still means 99 chances to have a perfectly healthy bbaby.

I know how worrying this all is, we came to the conclusion that we would have this baby no matter what, there's been much crying and it is really stressful to not know.

I think a lot of the stress was brought on by how the hospital staff handled us (badly.)

I wish my post was more helpful.

Number for ARC (Antenatal results and Choices) is 020 7631 0285 . Please ring, they were a lifeline for me .

Hi

Thanks for the help.

We were a bit disappointed with the hopsital to be honest. They told us this information straight after the scan, gave us a couple of leaflets on the soft markers and amnios and told us to go away and ring them on Monday. We rang them on Monday and the woman told us if we dont want an amnio then there is nothing more they can do and we will just have to see what happens when the baby is born. We were left not knowing what to do or what to think. If I did not have the internet I dont know what I would do because the only reassuring information I have had is from doing more research myself. When we left the hospital initially we were devastated... we had not been told how many babies have these markers and are completely fine, we were told 'these things are associated with Down's, go away and have a think about what you want to do'.

I feel so angry at the hospital the way they have dealt with it. They might say these things all the time, so might not see them as significant, but this is my first baby, I dont know how I am meant to deal with information like this. We weren't given any numbers to ring, or anything reassuring. We weren't offered a follow-up scan and had to persuade the woman to give us an appointment with a consultant. She told us she could arrange the appointment, but no-one will be able to tell us the baby is okay, and she didnt see the point. We understand the risks, but I just feel it would be nice if she could have said, 'look, these markers have increased your risks but there is a good chance they mean nothing etc etc' instead of being so clinical and matter of fact. In a way, I dont think the hopsital should cause so much worry and stress over something which have what all the research says is a small connection with a serious chromosomal abnormality, whether it be Down's or Edwards, and definetly if they have no intention of offering any follow up support.

Thanks once again tho x

Thanks for the number Diege Are you still following the june thread, a really good bunch of people there :D

worriedamy I hope you're not worrying too much, as Diege said in some places the markers are so common they don't refer you anymore.

worriedamy I feel exactly the same and totally agree with you, the hospital made it a million times worse for us.

This is my post from when I got back from the sonographer:

"
Unfortunately the sonographer found 2 cysts in our baby's brain so I've been referred somewhere else for another scan (soon hopefully).

As for the first scan the nhs were a bit of a mess and overall I'm sorry to say it was a really stressfull experience.

The sonographer was rough (pushing quite hard on my belly, trying to make the baby move, not talking us through anything or answering any questions) and at the end, after telling us he'd spotted 2 cysts he went on to say that he wasn't allowed to say anymore than that about it.
He also said he couldn't see the sex, but then said "maybe probably a girl", he seemed so unsure we didn't beleive him.

Then they made us wait for over an hour after the scan without telling us what we were waiting for.
The first person we finally saw said that because there aren't any other "markers" (anomalies) at all then it's very likely that the cysts will just go away by themselves.

Then she said that they'd lost my maternity notes.
Then she noticed they'd forgotten to book me in for the glucose test. (which I'd also asked about when Tee mentionned it to me and told not to worry about).

I went to the birth centre to get registered so I can finally see a midwife and the receptionist there had a go at me for not having a 16 weeks appointment. (The midwife I was assigned to quit over xmas and when I called the birth centre they told me to go today so I don't see how I could have done it any other way.)

She wouldn't register me either because I haven't had a glucose test (which they forgot to book in).

Anyway, someone else turned up and asked what the problem was and booked me in to see the midwife I saw at the booking appointment there and then.
(By then it's 2pm I haven't eaten anything and I'm in floods of tears).

She was reassuring and nice, booked me in with her for my next antenatal check, booked the meet and greet at the birth centre, listened to the heartbeat which was fine, took my blood pressure and urine which were also fine.

Now I'm waiting for the other scan place to call me to make an appointment so we can double check the cysts.
"

I must also say that someone else told me they were told BEFORE their scan not to panic if they found soft markers as it is common and mainly just goes away on its own later in the pregnancy.
This was seconded by the sonographer I saw at the referral scan.

I also think that they are too clinical and just do their jobs without compassion sometimes. They "know" its worrying so they tell you so but they clearly don't understand the worry.

One of my questions to the first sonographer was, "what happens if the soft marker doesn't disappear?" (ie does the baby have an operation or what??)
and he said "i'm not allowed to say anything more about it, you really just need to take it one day at a time". and although i can understand why he would say that there's a part me of me who thinks "What a wanker honestly, instead of reassuring us like everybody else did after."

I was encouraged by a few people from my june thread to complain about the way it was handled. (not done it yet though.)

all in all Im glad i was referred somewhere else, even if nothing else than amnio can be done at this stage they were so much nicer and comforting that we're totally reassured now.

Hi June

I know, I understand that the hospitals now have procedures and things they have to say to cover their own backs because they are so worried that they can get sued if they dont tell you something, but I just wish they would put all the stupid scripts and procedures to one side and actually speak to us like real people and say what they actually think. When we spoke to the woman in fetal services on Monday my partner said 'All the research we have looked at says these markers are likely to mean nothing, I dont think the amount of worry they are causing us justifies us being told about them' and she replied with 'Yes, probably, but we have told you now so we have to get on with it'. I felt like screaming at her, the insensitive bitch!

One thing I am not sure about tho is that when the sonographer was pointing out to us where the soft markers were (because I asked her to show me) she told me the cyst on his brain would probably go by 24 weeks, but when we saw the woman from fetal services after the scan she told us they dont go, they just cant be seen anymore. But everything else I hear from other sources tells me that they do actually go most of the time. I dont know why, but it seems like she would do anything other than offer us another scan.

When I asked her about whether they checked him anatomically to see if there was anything else which might point to an abnormality she replied with 'I dont think so'. How can she not know this?!!? Surely they would have looked for all these things- nasal bone, limb length, his ear location, if his hands were clenched etc etc?? Would they not automatically look at these things if they saw a marker??

I dont really know what I want from day to day... one day I want to know as much information as possible and the next I just want to forget about it, and wish I could turn the clock back a week to when I was still exctied about being pregnant...

I dont think I want to go for a 20 week scan ever again

Hi worried . I think the way you have been treated by the hosptial is appalling, and goes against NICE guidelines following discovery of possible 'markers' following an anomaly scan. You should have seen a consultant preferably after the scan, and not had to make an appointment. Research into maternal anxiety caused by markers (ie, unproven possible slight links that we can't say are linked in any definitive way)was one of the reasons why the antenatal screening Wales guidelines on reporting such markers were changed in 2004 (I don't know much but I do know this as I was one of the researchers), and for that reason (along with no clinical link) they are no longer reported unless seen in conjunction with 'structural' markers (ie. hard markers) (for eg. 2/3 weeks behind growth, clenched fists, enlarged cerebral ventricles) - even then, more chance than not of things being fine.
A few other points while I remember. CPCs from the latest research aren't actually associated with ds (latest research). In isoloation they mean nothing, but the syndrome they have been linked with (Edwards)is a condition that almost always is pretty obvious to sonographers at the 20 week scan (behaviour of foetus (convulsions), small-for dates (more than 2 weeks behind), mishaped feet). As the woman at ARC said to me, Edwards is a syndrome that is far easier to spot on a scan than ds, that frequently displays no obvious markers.
I would really, really recommend you ring the lovely people at ARC. They are so reassuring about such markers, and you can ring back again and again and they are there for you xxx
JUNE!! Must pop in and say hello again on June thread - I have been lurking and everyone seems lovely

Thanks for all your help

I think it is really disappointing and worrying that mums who have been told the same as me, who dont have the internet, wont have access to any reassurance like this, because of the lack of reassurance offered by the hospital.

Might email ARC, dont think I want to speak to someone about it over the phone just yet, it upsets me still when I speak about it to people. Thats why I haven't really told anyone about it... I dont want to have to explain, and then answer questions... and I certainly dont want people looking at my baby when he is born to work out if there is something wrong with him If it turns out that he does have an abnormality I will tell people when I know for sure...

I just want to meet him now! Can believe got to wait so long for him to arrive!!

That's understandable. I know what you mean about telling people - I've started just saying that my 20 week scan was 'fine' (which it was, but still...)as don't want to have to think about it all again. I am also having a boy (after 3 dds) so that becomes a talking point!
By the way the people at ARC are used to tears...I had a few sobs when on to them as they were so kind. I tried the e-mail option myself but couldn't be delivered for some reason?
Let us know how you get on, and try not to worry. I was a nervous wreck after scan with dd1 (2 soft markers, then 2 more when rescanned later on). She was absolutely fine, but I did grieve I think for the pregnancy experience I felt I had lost. In part I think that's why we had dd2 so soon after (15 months apart). Try to enjoy your pregnancy, and please don't wish it away like I did.

Hi WorriedAmy and June 2009 (me too!)

At my 12 week scan I was given a 1/15 chance of DS based mainly on my bloods. I was also left sitting outside the room - alone - for 1hr, then given aspirin!

We were given date for 16 week 'soft marker scan'However, Wben partner and I turned up for appt sonographer had NO IDEA why we had been booked in as it was 'too early for soft marker scan. I was NOT pleased. Really expected to come away with a definitive answer either way ( refuse Amnio as wouldn't terminate). Felt like screaming - but who to???

We have been booked in for 21 week scan. I spend most days on net looking at all possibilities and confusing myself.

Have accepted that my child may have some abnomality and that is OK. but, I really want information. Who can I ask about my specific circumstances? Who can look at my nots and reassure or inform me???

I am appalled at the treatment I have received but who do I complain to?

I have begun to enjoy my pregnanacy again and I am back shopping and thinking about the development, and counctig down the days to the anomoly scan

Thinkingof you both. Keep us posteed on your progress.

Diege, we didn't tell anyone about the scan either, too complicated, too emotional.
I hate the way people gossip as a way to just make conversation and how what they say just gets further and further from the truth with every person.

I coudn't even tell my GP when I had to see him to get antibiotics the same week.

People who haven't been through it won't know what to say and probably either be clumsy in whatever they say or avoid the subject completely.

I also feared someone would come up with "it's in God's hands" or "what's meant to be is meant to be" type of thing.

I would really encourage you to call Arc if your hospital is not helpful or offering you counselling. Did you speak to your midwife or GP and tell them how worried you are? they migth be able to offer you something.

Hi June

I know what you mean, I was really worried about posting something on here just in case someone said something that I didnt want to hear! They might say something with the best intentions and may even by right in what they say, but it might not be what I want to hear. All the good stuff I read seems to be pushed right out of my head by the one thing I might read which is not what I want to hear.

But I do feel better now after speaking to people who have been in similar situations...

I know what you mean WORRIED. I am avoiding all googling as for some reason even when I read something encouraging I carry on searching almost until I can tormenty myself with something else. Feel much better for not googling now I must say!

JUNE, agree, I had the 'well, whatever happens it's still your baby' with dd1, which of course is true but doesn't exactly leave you with a sense of reassurance!

I really feel for you. I also had CPC's at my 20 week scan, I also have two close friends who have had two soft markers and had healthy babies, and one who had more than that and had to go to another hospital for screening, and also had a healthy baby. Googling things is one of the worst things to do - but it really is almost impossible not to when you feel you have been left adrift with no information. For what it is worth, myself and my two friends all had our 20 week scans at the same hospital, and the follow up in each situation was hugely different, and analysing this can be worrying - for example, I knew one person who had CPC's and then had to see a consultant immediately afterwards to talk about what they were, etc - and i didn't, which left me wondering why they had treated us differently and if it "meant" something. I also felt the attitude of health professionals throughout my pregnancy - not just related to the CPC thing - was that all pregnant women are out to get as many scans as they can, and they jealousy guard their ultrasound machines at all costs!
Sorry this is long, but it is a subject I feel strongly about - as I think there are many expectant mums who are left in the situation you are in now without adequate support. Hope all goes well, and you are able to enjoy your pregnancy

Hi amy,

my third pregnancy showed soft markers for Downs too. CP cysts, slow growth (my other 2 babies had been huge) and my age (38). We decided against further tests for the same reasons as you. We did have another scan a week later and the cysts had reduced but not gone. I worried through the rest of my pregnancy and it was the first thing I asked about after DS#2 was born.

All was well. The cysts would normally close up at about 20 weeks and it might be that you are not as far on as you think. Are the going to scan you again?

Try googling for CPCs - there is a forum for support and advice.

Ha, I did go about google crazy on Friday after the scan and over the weekend, I was printing off journal articles, analysing studies, in the end my head was just so full of stuff that I didnt really know what to think any more. I definetly over-analyse things, and think the more I know the more I will understand, but with this all I kept finding was 'dont worry if you have one marker' so I would breathe a sigh of relief, until the next line would say 'however, if there are two or more markers or anything else noted... etc etc' so I would be back to panicking! I was sat looking at his scan picture trying to work out if his ears were in the right place, if his head was the right shape and then feel dead guilt for looking at him in that way, and then get upset. I think I have now exhausted most information sources on google, and think I'll be best leaving it alone! After all, I should be working right now, and haven't really done any constructive work since Friday afternoon- not that anyone would be able to tell the difference!

Hi there -- just wanted to say they picked up two soft markers at my 20wk scan: dilated rental pelvis and e.f. It was a terrible shock and all I could think about was the worst. It was a horrible time and my heart goes out for you and your partner.

We did opt for the amnio: we wanted to know, rather than struggling with what ifs, and we also knew we would have terminated in certain circs. A consultant did the amnio, and very sympathetic and sensitive she was too.

The results were a huge relief -- and DS was four a few weeks ago and is as healthy as anything.

HTH.

Hi Worried . How are you feeling? Did you get an appointment with the consultant? Hopefully you can get some reassurance, from here or elsewhere, and enjoy the rest of your pregnancy. When are you due?

Hi

Yes I am feeling a lot more reassured after speaking to people on here, so much so that I am a bit worried about seeing the consultant now in case he/she tells me something I dont want to hear, and I am back to worrying even more!! My mum is a childrens nurse and she spoke to one of the paediatric people and they said they see them all the time, and to only worry if there were anatomical signs as well as the soft markers, so it all helps. Still doesn't take the worry away totally, but I suppose thats what the rest of my life will be like now... one big worry!! We go and see the Consultant next Thurs- the same day as I see my midwife for 22 week appointment, so should be an interesting day!!

Due Father's Day btw- 21st June!!!

Just popping in before bed. Glad you're feeling reassured. I'm also in a similar situation in that I see my consultant in a fortnight about something unrelated (possible but very unlikely cervical problem) but which means he will scan me. I am either (a) going to cancel as they measured my cervix during 19 wk scan and fine, or (most probable)go but state very clearly that he's just to look at my cervix and not go on a soft marker hunt! If he disagrees, I'll just walk out...so is the plan
That's nice and reassuring abouut the paed nurses. My sonographer with dd2 said they see the echogenic foci in heart all the time in adults and children, and don't even record it, as it's considered normal...
Oh and snap, my due date is also 21st June . Would be good to keep in touch, so if this thread runs its course and you fancy a chat my e-mail is [email protected]

worry do you know abou thejune thread?

There's a good friendly bunch of us in there,

Thanks everyone!

I know we will prob go to the consultant on Thurs, but I am at the stage now where I dont really know what to ask anymore?? Will be nervous as hell before we go...

Hi

We go to see the consultant tomorrow... are there any questions I should ask?? I know it is down to us really, but I am not sure what to ask because the only route they have offered is an amnio... not really sure what else we will gain from seeing the consultant...?