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...????

Hello . I know what you mean. Just as you start to feel ok/reassured, the whole things becomes a scary worry again. I have my appointment next week, and feel like you that as I'm not going to have an amnio the best that can come out of it is added reassurance. They shouldn't pressure you into anything, and if you have someone with you that will help too.
Best of luck for tomorrow - let us know how you get on x

Oh and re: questions, I'd make it clear that you're looking for reassurnace rather than added worry. Why not give ARC a ring before you go, so that you have some knowledge to hand about how harmless these markers are considered to be?

Hoping things went well for you today and that you are feeling reassured

Hi all, this is a really hard post as I've not been on MN since we had our 20 week scan on Monday. Our LO also has a CPC.

We were treated so badly at the hosiptal (I'll spare you the details) that whilst the news was devastating, the situation was made worse if that was possible. Following a hideous 'chat' with what can only be described as a complete git (otherwise known as consultant), we have come home and done our own research and now feel a little better about things. This thread in itself has been reassuring.

We were also told that CPC's don't have anything to do with DS and only ES was discussed with us, but to be honest we don't trust anything that we were told. There were no other soft markers as far as we could tell (if there were, they weren't noted or discussed) baby's hand were wide open and waving, feet look normal, head was normal, size is right for date, legs seem quite long actually, organs OK, so we remain hopeful that baby will be OK.

We are contemplating going for a 3d scan aound the 26 week mark to try and enjoy the baby again but are so nervous that we'll spot something and worry even more.

We're also finding it dfficult to get the excitement of being pregnant (this is our first) back on track and whilst we were contemplating buying things, we're now thinking we should wait quite a bit and only buy the necessities, as ES is such a serious condition. I do hope we get over these feelings, but for now it's a bit hard. My husband has been great and is 100% convinced that the baby is fine, but I hate having this big cloud over us.

Hope everything went well with your consultant, we're going to see midwife on Tuesday to see if she makes any more sense than those we've talked to already.

Thanks for all the great info, and thank goodness for the internet as it seems we probably are worrying about nothing...

Hi

Went to see the consultant yesterday- she had a good look at the baby and the two markers were still there, but she told us she cannot see any other problems. His growth seems fine, his measurements are all correct, and after a good look at his heart she said that his heart is working fine and she cant see any problems. She then when through the implications of the soft markers with us. She explain about the cyst in his brain and the association with Edwards, but she basically told us not to worry about that, as the baby has no other anatomical signs associated with the disorder and she said she would have expected to see other things by now, such as overlapping fingers, club feet, strawberry shaped head, etc etc. Then with the focus on his heart she told us that there is a mild association with Down's and that she can't tell us the baby will be okay, but without an amnio, she wouldn't be able to tell anyone that.

She didnt really tell us anything new, but she was just so much more reassuring than the first woman we saw after the 20 week scan. I was also reassured by the fact I know that they baby has had a good look over, and they can't see any other soft markers/ hard markers etc. That was what I was worried about- going back and coming away with more things to worry about than before I went in.

I couldn't watch while the scan was being done. I started to watch, and then she marked the cyst in his brain. Then she measured his head, and at that point I couldn't watch anymore. I couldn't put myself through watching her mark all these things on my baby, and not knowing what they meant. So I just chose to see what she said at the end of the scan.

Highrise- I know its horrible, and for the first week after having the scan, all I could think about was what had been found at the scan. Everytime I showed anyone his scan picture that was all I could think about. But I feel a lot better now. The consultant said these soft markers are the bain of their lives, as so often they dont mean anything. She also said how flawed the original studies were that showed the connection between these things, and how long ago it was when they were done. She said new studies need to be carried out on a healthy population, and see if the connection is still there. If they found not anatomical problems with your baby and they only saw the cyst(s) in his brain, I would really try not to worry. I know its easier said than done, but the consultant told us that it is very unlikely that a baby would have Edwards, and nothing anatomical get picked up on the scan. So really, try not to worry. We are going to buy our nursery furniture next week, I am starting to enjoy my pregnancy again. It is always going to be there, and it is the first thing I will think about when he is born, but it is not affecting me as much as it did.

Funnily tho- I said to the consultant during the scan that the last sonographer said he is a boy, I appreciated that she couldn't be 100%, but did she think he was a boy too. She laughed, along with the two students with her, and the midwife in the room too, and said 'he is definetly a boy!'. She pointed out his bits, and on cue he started playing with them! Typical boy!

Hi worried, thanks for the update, really pleased it went well for you. Sounds like you had a good consultant who whilst can't guarantee that everything will be OK, at least was able to explain the risks and put them in perspective, which on reading sounds like everything probably will be OK.

I have to say we are feeling better as the week has gone on, we're definitely moving forward with the belief and hope that our baby will also be OK.

I'll post next week after we've been to see GP & MW and let you know if we get any more info.

I do hope the rest of your pregnancy goes well, and we're keeping our fingers crossed for you and evreyone else who has posted.

Thanks again.

Glad you had a better time with the consultant WORRIED, and thanks for update.
Interesting to hear your story too HIGHRISE, and that you had a bad hospital experience. Interestingly, national guidleines have now changed so that next year cpcs won't be reported if seen in isolation, so we would have had 'normal' scan reports Also WORRIED, in Wales since 2004 neither of your markers have been reported, even if seen together (only if seen alongside something 'structural'). It's a strange world!

Diege, that is really interesting, surely some further research has to be done as it causes so much distress to parents, and probably makes a real significant number go through with unecessary amnios.

I feel that I can now talk about our experience without bursting into tears.

Following our scan, the consultant said we could have 5 mins of his time, but if we felt we needed 10 he could stretch to that. He told us this 3 times, that we could have 5 mins.

Once inside the counselling room, he started to tell us a hypothetical story where we had a baby with downs but for example I had a sister who had a baby without downs, he went on discuss the risks of this happening to 2 women same age, same genetic make up etc. He then stopped half way through, walked across the room look at a painting on the wall and said ' oh I thought that was just hanging funny, but it's actually warped'. My husband and I both sat there open mouthed astounded that he completely stopped mid sentence to go do this. He then noticed our astonishment and said 'sorry I'm very easily distracted'

Bearing in mind at this point we had only just been told our baby had a cyst on its brain and nothing else. He didn't finish his story about DS so we'll never know what his point was. He then started a new story about Edwards syndrome, so I stopped him and asked what we were talking about DS or ES? He said in your case it's ES only.

He told us our risk would be 1:350, I explained that we had bloods done which said they were 1:10000 ish he said 'oh well then you're probably 1:5000 but maybe 1;350'
It just didn't make any sense what so ever and the fact he didn't even read our noted before talking to us was so poor.
At one point during his 'counselling session' he said 'don't worry if the baby does have ES, it probably won't make it to term anyway'

The sonographer then pushed some paper under the door which provided details on the hospital protocol which stated that the cut off for divulgin information on CPC's was age 36 (I'm 35) he looked at this then said, 'oh just ignore everything I've said you're OK, we shouldn't have told you anything, I just didn't know the protocol'.

He was completely blase about the whole thing, kept making jokes throughout, and was not able to provide us with any real information at all.

We just simply left and told him we were pleased not have used up any more than 5 mins of his time. How are these people allowed to be in contact in with the general public?!

The biggest problem I now have is that I have no confidence in the hospital what so ever, and if this guy comes any where near us at birth, I'm not sure we'll be able to control my anger. This aspect I'll be discussing with the midwife next week, which is a shame as all the MW's have been so nice to date.

We have taken a lot of heart from this thread, and we sincerely do hope that we all end up with a happy outcome.

Good luck to evreyone.

HIGHRISE, what an appalling consultant experience . I would seriously think about making a formal complaint, if only to make him think twice about his attitude in the future.
You're right about the anxiety it causes - I've published on this and my findings went towards part of antenatal screening wales' policy on not reporting cpcs (anf other things) (whatever age of woman). TBH, think they decided this on basis on cost (not one woman in their sample who had an amnio with isolated cpcs (single, bilateral, or several) actually had an 'affected' baby so they were wasting their money on amnios...) but my research (and others)ticked the 'reduction of maternal anxiety box' . My sonographer actually said I was the 3rd person that day they'd seen cpcs with on the scan, and they see about 50 cases a week, so yes, must cause a lot of anxiety. I was lucky in that I went to see a consultant who was so lovely. She said that if they had found 2 markers I would have had 1 in 100 risk of ES which isn't actually that much more than my age related risk anyway (38) - something like 1 in 140. She said I had a far higher chance of miscarrying with an amnio than having a baby with ES (she too had never seen an 'adverse outcome' with cpcs).
Let's hope we can all try and enjoy our pregnancies now. I'm pretty much there I think, though am seeing a different consultant on Thurs who will scan me for something totally unrelated - I'll make it clear I don't want him looking for things!!!

diege, thanks for that. It's really intertesting that you were the third that day, particularly as most info we've read suggests that only 1-2% of babies are affected, we do wonder about that statistic given the tranient nature of CPC's. For example, we live in Scotland where many hospitals don't even offer a 20 week scan, so there must be a huge amount go undetected (how we now wish we were in a different region!)

We are considering submitting a complaint as this guy just shouldn't be allowed out in public. We were so shocked, we can't remember his name, but I'm going to try to obtain that through the MW or GP.

With regard to our pregnancy, I think we are getting there, we started looking at baby things again and I do think we'll get there soon, the baby kicking all the time is a real help, as it is a wonderful reminder that we have a new little life inside, irrespective of the possible outcome.

Best of luck!

Good luck to you too! I'm also starting to get excited about baby too . It's a boy (have 3dds) so feels like having my first all over again! Think our due dates must be pretty close? (21st June)
Movement is a very good sign. I also have a very active bean despite having an anterior placenta which apparently cushions movement. I'm glad for the cushion at 3am in the morning!

Oh and we were quoted 5% as figure for cpc in population. I suppose if a unit scans 200 a day like ours does, and sees 50 a week that would sort of work out!

I'm glad we are all starting to enjoy our pregnancies again I'm so glad that I have been able to have this discussion on here... without it, I dont think I would be at the stage I am now... thank you everyone xx

LeninGrad - I had a very low PAPP-A reading with both my last 2 pregnancies but very good nuchal fold measurements, nasal bones etc. In the end everything was fine. I have heard something about low PAPP-A being nature's way of limiting the size of the baby for the benefit of the mother. My partner and I were both 9lb at birth and I wonder if this has anything to do with the low PAPP-A being a factor. Low PAPP-A was not a factor in my previous 2 pregnancies (but exH was about 6.5lb at birth) and my first two children weighed 9lb 9oz at birth. Both my low PAPP-A babies were 8lb and absolutely fine. Perhaps worth finding out what weight you were as a baby and what weight the father of the baby was. If you and the father were larger than average as babies yourselves then perhaps your genes l predestine your child to be huuuuuge and PAPP-A is a way of controlling that?

LeninGradthis might be of interest

Highrise - that consultant sounds like a complete arse. However, if he is talking about ES only then I think on balance that is good news - It really is highly unlikely that a baby would have ES and look otherwise OK on a 20 week scan. Perhaps his flippantness was actually because he is pretty well 100% convinced that there is nothing to worry about. If it was me and I was worried I would pay for a detailed scan with a consultant.

Diege, We are very close in dates, I'm due 29th June! Congrats on having a son, that's great news, and having 3 older sisters to fuss over him, what a lucky boy!

I might return to over the moon in June thread in the next couple of weeks.

WorriedAmy couldn't agree more about this thread. I was sceptical about MN at first, but it has proven to be a wonderful resource for us.

brett he was an arse, I think that was the biggest contributing factor to his attitude, but hopefully you're right. We are going to go for another scan around 25 weeks, might even go for a 3d.

Thanks again for all the support.

Just a quick message in case anyone searches for reassurance going though the same thing we went through after our 20-week scan...

Caelan was born last Friday (3rd July) a healthy 8lb 6oz baby . After a thorough check over by the doctor after he was born, it was confirmed that he was a very healthy little boy, with no sign of any of the chromosomal disorders suggested by his scan.

xxx

Ah! Just read the whole thread, what a wonderful ending!

Congratulations!

We had CPCs picked up with our first child 4 years ago and a high risk for DS with our second child this year so I feel for what you went through and I sense your relief.

I also have a new baby (the one we had an amnio for). We are incredibly fortunate there's no problems here either.

Now you can go and enjoy him!

Congratulations worriedamy, thats lovely news. Ive been for my 20 week scan today and CPC,s were picked up, sonographer tried to reassure me and said she couldnt see anymore soft markers, but im still very worried.Im 39 now, so more 'at risk' so to speak, of chromosomal problems.

Hey i thought I'd update this thread since amy reminded me of it ;)
We had a little girl in June as well and she is also absolutely fine.

diege still around? we're still on the june thread