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'Reverse Flow in Ductus Venosus' - 12 week scan at FMC

(152 Posts)
Toppy Mon 09-Mar-09 21:24:31

I am posting this in the hope that someone may have been in a similar position and can help me understand the implications of my 12 week scan - apologies for the long post.

I have just been for a 12 week scan at the Foetal Medicine Centre where one of the markers they check is the Ductus Venosus flow. My baby's flow is reverse flow. This can be an indicator of Downs. We were told that 80% of Downs babies have this condition bu that 3% of 'chromosomally normal' babies also have reverse flow. Once combined with my age, blood results or other markers (nuchal fold, nasal bone) we were given a very low risk of Downs, Edwards and Patau.

DH is very happy with these results but I can't stop worrying about what this reverse flow means outside of the context of the Nuchal scan. The sonographer said we could do nothing more than wait for the 20 week scan and focused on my low chromosomal defect risk.

Now I am home I am worried about what might await us at the 20 week scan as reverse flow can be indicative of heart defects. This has just caused the most ENORMOUS row between me and DH. He can only see the facts: in the context of the 12 week scan this anomaly has been cancelled out to by other good indicators to give an overall low risk whereas I, worrier that I am, can only think about why the anomaly is there at all.

I know there is nothing I can do but wait for the 20 week scan and google (bad bad idea) but I was hoping someone else further on down the line might have had this experience that they could share.

angel1976 Mon 09-Mar-09 21:53:05

Hi Toppy,

Just wanted to say I'm sorry to hear about your news... What risk did they give you in the end? I can't say not to worry as I know you will worry anyway! Just sorry that you are going through this.

I have just booked a 12-week scan at the FMC hoping to avoid what I went through with my first pregnancy. Basically I was given a 1:63 risk just based on the scan alone at my local hospital. They didn't look at the nasal bone (which they saw at the detailed scan they did before I had the CVS done at Harris Birthright Centre at King's College) or heart... My DS was born completely healthy if that comforts you. I guess they saw a nasal bone for you? Apparently 75% of babies with Down's syndrome don't have the nasal bone so I guess seeing one is an extremely good sign.

There could be all sorts of reasons for heart problems. My brother has Marfan syndrome (it's a connective tissue disorder) and he has a heart murmur of sorts. It has never affected his quality of life (he's told to avoid strenuous exercise as his heart does not pump blood very effective and his valve is the wrong way round, I think? But he has always played football etc!).

My DH and I just had an argument tonight over me booking a scan at the FMC. He thinks I will just find more things to worry about hmm while I think I will more re-assured if more factors are taken into consideration... Good luck whatever you decide to do! I know that Professor Nicolaides does CVS and amnios at FMC on Wednesday just in case you are considering...

Ax

linspins Mon 09-Mar-09 22:02:42

Hi,
I know the kind of worry this thing can cause and its understandable that you are worried. Our situation was different, - our DV flow was positive, but we had other things wrong (I won't go in to it all now).
But, how about asking to have another scan at 14 or 16 weeks? Saying you have to wait until 20 weeks is a bit rubbish. We had an extremely detailed heart scan at The Harris Birthright Centre at King's, at 14 weeks 4 days. So maybe if you requested one earlier, to put your mind at rest, it would help? Another scan may sway you towards or against a CVS too, where you'll find out for sure.
I've always found all the medical profession so helpful in trying to reassure me, its one of the things they are there for.
Other than that, if the nuchal fold is good, the nasal bone is there, and your risk is low, then I am wishing you the very best of luck and congratulations on your pregnancy! xxx

lizlemon Tue 10-Mar-09 19:39:18

I'm in a similar position to you - I had the scan at Kings and everything was fine and normal aside from there being no nasal bone - the numbers are similar to yours: 75% of Down's babies have no nasal bone at this point, but so do 2% of normal babies. The consultant I finally spoke to there wasn't worried at all, and didn't think there was a need for tests, but like you I've worried about it ever since.

Personally I think that you are the one carrying the baby, and your emotional state is important. I've decided to pay for a second nuchal scan at the FMC at the end of this week. For one, we'll be better prepared to ask the questions we didn't ask last week, and there is always a small chance that the bone will have ossified a bit more.

You could have another scan, or you could call the FMC and see if you could talk over the results with someone again, now that you've had time to digest (and google - googling is very bad isn't it?)

Toppy Wed 11-Mar-09 15:08:41

Thank you very much for your replies. My risks of a chromosomal abnormality carried out by the 12 week scan are 1 in 700 (it would have been a lot higher had the reverse flow not been there) so I am very happy with that risk but the very presence of the reverse flow means there is a likelihood of detecting abnormality at the 20 week scan.
Given that the FMC said I can do nothing but wait for the 20 week scan I guess I want to ask a medical professional what this reverse flow could mean and can it 'go away'. I know 3% of 'healthy' babies have this condition at 12 weeks but because that is such a low figure I can't seem to entertain the idea that we might be in that 3%.

Lizlemon I can see that your situation is similar. Do let me know how the scan goes. The FMC really are excellent. Its an odd position to be in when the overall risk given to you is low yet an obvious marker is not there. Lordy I wish I had not googled. 'Reverse flow in Ductus Venosus' is such a technical term that only very medical pages come up full of hard hitting negative prognoses which don't tally with the apparent lack of concern on the part of our sonographer.

linspins Thu 12-Mar-09 08:09:29

Toppy,
Does your local hospital have a 'screening midwife'? We have one who oversees appts for tests, getting answers for worries and generally being a point of contact through this whole business. She might be able to point you in the direction of a medical professional who can talk you through the implications of reverse flow.
Or maybe try calling ARC (Ante natal Results and Choices)- A great charity who are involved in giving support with the whole ante natal testing stuff. If they don't know the answer to your questions they will find someone who does. You can find them easily on Google.
Good luck. xxx

Toppy Thu 12-Mar-09 10:28:10

Thanks Linspins - I just called ARC. They were so lovely, helpful and very informed and it was nice that someone was telling me it is okay to be worried rather than 'try not to worry'. What a marvellous service. She helped me work out what I wanted to ask and where to go to ask it so I am off to make some more phonecalls now.

linspins Thu 12-Mar-09 10:52:43

Toppy, that's great that you've asked for help.
ARC have been fantastic for me, although my story (ies) have very sad endings. But they are such a life line to those who need them, whatever the outcome.
Wishing you all the best. xxx

loveyou Mon 16-Mar-09 19:24:56

hiya could someone help me my daughter went for a scan today and was told that her baby as ductus-venosus reverse flow but they never told her what it ment i have looked it up and it says that some babys have downs and others will have heart trouble can anyone help me on thid it says on her notes A-wave flow
piv 2.210 please help

Toppy Mon 16-Mar-09 20:07:09

Loveyou - that was sort of the position I was left in.
The DV is a little vein that moves blood flow from the umbilical cord to the heart. Reverse flow is measured at places like the FMC at the 12 week scan purely because it can be a marker for genetic abnormality - 80% of Downs babies have reverse flow. However 3% of chromosonally normal babies also have this.

I was told that if your baby has a reverse flow at twelve weeks but no other Downs markers (high nuchal measurement, absence of nasal bone, a poor bloods result) then your risk of one of the big three they test for (Downs, Edwards and Patau) is low.

The reason I originally posted is because yes overall I was given a low risk and my husband and the sonographer were happy but in my mind the story does not end there - reverse flow can indicate congenital heart defects. These cannot be picked up whilst the baby is so tiny so we were told to just not worry but it would be reviewed at the 20 week scan where the heart is looked at in detail.

Of course I am worried - I am sure you have seen that google throws up all sorts of horrid things. I phoned ARC who talked through all the things I could do to try and get some peace of mind and then ended up phoning Chelsea and Westminster and spoke to a lovely sonographer there who told me that the NHS do not test for the DV as it is notoriously difficult to scan (this was my last marker the FMC lady checked for and it took 40 minutes) and is prone to human error. She also told me that her friend had had the same experience and the baby is 100% fine - it came to nothing. I am clinging onto this story so I do not spend the next 8 weeks worrying.

I still can't find out any answers to all my questions though. Like if my baby is in the 3% does the reverse flow just go away ? What else could it mean.
Whatever the outcome at 20 weeks I will come back and update this thread so it can sit in an archive for anyone else that does a search on reverse flow in venosus ductus.

If your daughter is given any more info would you mind updating this thread ? I can usually find answers to my questions with enough digging but this one has been left hanging.

lizlemon Tue 17-Mar-09 08:52:45

Just thought I'd post an update about my follow up scan. I did go to the FMC and happily the nasal bone was there - the updated risk was 1 in 6166. This was only 6 days after the first scan (I was 12+6) so I hope this gives some comfort to those who might have found this in a search.

The sonographer at FMC was surprised to find someone from Kings in his room, since it's exactly the same scan, so perhaps they don't always grasp the impact that their final numbers can have on the woman. He said that up to 5% of normal babies have a nasal bone that is slow to calcify, which is different to the number we were given by the consultant, and that in most places they don't even check the nasal bone - no wonder we are confused! The trouble is that once they have checked the nasal bone or DV flow, then you have the result and you can't pretend it's not there or dismiss it as irrelevant.

I also must add that I talked the results of the first scan through with my midwife and she was fantastic. She was very confused that they had suggested cvs when my risk was 1 in 1025, and reassured me that an absent nasal bone isn't that uncommon. I still went for the second scan and I'm so pleased I did, but knowing she was there for me made a huge difference.

Toppy, I hope that everything works out all right for you - I'll be looking out for your update.

Toppy Tue 17-Mar-09 10:09:43

Lizlemon - that is fantastic news and a really good result. Probably the best money you have spent.

I have my first MW appointment this Wednesday (a novelty - it was all GP led with DS1 who I had at Q Charlottes - have switched to C&W this time as so much closer) and I am going to talk through it with her.

bexincornwall Wed 15-Apr-09 17:49:29

Hello, I just wanted to say I am in the same position and would be very interested in any information you have found about this. We had the 12 week scan at the FMC yesterday and I came away utterly confused having been told that we had a reverse flow a-wave. My experience there wasn't at all what I expected as the Dr we had was almost incomprehensible (not sure what nationality) and really did not explain things at all well. All we're left with is a huge worry and no idea of the implications. I will not continue this pregnancy if there is a problem as I genuinely couldn't handle it and the impact on my existing family would be too great (sorry if that sounds harsh but it is true and was the entire reason I went up to London and paid for this scan) but they have left us hanging with no information and no idea what to do. I have also called them several times today asking for another doctor to call us about this but to no avail (and as they shut in 10 minutes I'm not holding out much hope!). Apologies for ranting on anyway! Bex

June2009 Wed 15-Apr-09 18:07:29

Just thought I'd add that a friend of mine had a high risk downs (1:95), baby had no nasal bone and reverse flow, she had a csv and that came back fine, baby is perfectly ok. Specifically about the reverse flow she was told that "it's probably nothing."

kellann Thu 30-Apr-09 08:08:07

Hi Toppy!
I am so glad you posted this as i have been told exactly the same thing and can not find any 'normal' info on it.
I see you post at the start of March, therfore you would be due your 20week scan round about now. I would love to know how it went and if the problem rectified itself?
My sonographer told me in 95% of cases the problem rectifies itself. Of course I keep thinking about the 5%! I have been given 1:29000 chance of my baby having downs syndrome, but i know this problem presents itself in heart disease. And i am sure you can relate to what feels like irrational worry!
I really hope you come back to this post as i would love further info.
good luck with the scan! hope it all goes well.

Toppy Thu 30-Apr-09 10:43:24

Kellann - guess what, I just got back from my NHS 20 weeks scan half an hour ago and thought I would update my thread and was surprised to see it so high up on the list.
The reverse flow was picked up at a private scan so I told the sonographer about it and she had a really good look at the heart. There seems to be nothing wrong. The scan was normal. I had loads of questions like 'wehere did the reverse flow go' 'is it still there' (NHS do not check) 'if not what happened to it' but did not feel I could ask as she may have thought I was a fusser (doubling up on the scans was a pretty good giveaway). I have a second scan at the FMC on Tuesday where I will ask all of these questions and their testing will be a little more extensive so I will report back in full then.
I have to say that the past 8 weeks have been rubbish and I was whipped up into a right state by this morning. I got really worried about what this marker meant outside of the context of the 12 week scan and was expecting heart issues but there seem to be none there. The relief made me have a little bit of a cry on the table which must have added to the signs of a fusser!

I really hope that my experience will help you switch off until from worrying about it until your 20 week scan as your anomaly risk is teeny tiny which is just great. I'm glad my thread was here for you to read as I was so desperate at 12 weeks to find someone else who had been in this position.

kellann Thu 30-Apr-09 11:18:15

Hey Toppy, thank you so much for updating!
So glad to here your in the clear! You must be very relieved. It will be nice to have the second scan so you can be doubly reasured.
You have mentioned that the NHS dont do this check, but I am under NHS care. I am at UCH in london and I must say they are a great hospital, so maybe they do the check because they are so thorough. It took the sonographer ages to get the result and even when he did I dont think it was 100% accurate.
My 20 week is at the FMC at UCH where the sonographer ordered an extra heart check so thats good.
It has definately helped hearing your babe is ok.
Enjoy seeing your little one on Tues again! Let us know how you get on.
Take care & thank you!

bexincornwall Thu 30-Apr-09 17:48:51

Thanks for updating, its so reassuring to know that you had a normal scan, it must be such a relief, I'm very glad for you. I'm finding it very hard to be positive about this pregnancy at the moment and am feeling I have to switch off from it (whilst still looking after myself) but its very difficult to look forward when you think it might not work out.

I have done lots of research in to this (and roped in a doctor friend of the family too - poor man!) - the only study I can find which is relevant to this specific problem (a reverse or absent flow in the ductus venosus with a normal nuchal translucency) is here: http://www3.interscience.wiley.com/journal/114268635/abstract?CRETRY=1&SRETRY=0

This study gives a negative outcome in 26% of cases (which isn't as reassuring as the 95% of positive outcome cases kellann mentions here - sorry!). I just thought this might help as it took me days to find and was also useful when I asked my NHS consultant (who had never heard of this issue) for a referral for a fetal echo cardiogram (or fetal cardiac scan) which can apparently potentially be done from 16 weeks and will involve a specialist fetal cardiologist looking at the heart for potential issues. Waiting to hear if I have successfully got the referral at the moment (I'm 14+2), although given that he said "someone" will ring me "at some point" to let me know (bit of a time issue here, or is it just me!?) I don't have much faith, guess its the old NHS lottery (wish I could go to the UCH, they sound great!).

Good luck with the rest of your pregnancy and thanks again for updating.

Toppy Fri 01-May-09 00:12:28

Hi Bexincornwall - I am so so sorry. When I logged on this morning I was so surprised to find my thread high up on the page that I only read Kellan's post. I completely missed your post from almost 2 weeks ago which is awful because its horrid to feel 'unread'. Thanks for the link. I am going to read it now.

Just for your info my NHS scan this morning was at Chelsea and Westminster and certainly does not sound as thorough as Kellan's at UCH but they were very unconcerned at the FMC reverse flow finding. I will definitely ask as many questions as I can on Tuesday.
The ridiculous thing is I have loads of medic friends and one who is even a consultant cardiologist but because I have been a ball of anxiety about this pregnancy I have only told my family and three close friends that I am pregnant even though I am 20 weeks. I just have not been able to commit myself to it and sort of detached myself after the 12 week scan

Toppy Fri 01-May-09 00:15:47

Boo - it would not let me in. I searched under the root and found the article which I was then asked to pay for. If you have a tick could you check the link as I am intrigued. I did DAYS of research on the net and still felt ignorant

kellann Fri 01-May-09 18:31:11

Hi Toppy & Bexincornwall.
I cant read the link either! Nevermind. Listen ladies you need to stay positive, just think if there is nothing wrong you will have put yourself & your wee one (more importantly)through a lot of worry. I completely sympathise because i too am worried, however i would not let myself get detached from the babe as he/she really needs me to be strong even more so if there is a problem. Just think of that little life relying on you!
I have been given the fetal echo cardiogram at my 20 weeks scan.
Dont get me wrong, i am worried as is OH, but I just have a feeling it is going to be ok - instinct is a tremendous thing - even if it just gets me through the next 8 weeks!
I hope you are all ok, keep us all posted, it is so nice to feel you aren't alone.
xxxx

bexincornwall Sat 02-May-09 18:06:08

Hi, sorry about that link - never my strong point getting things like that to work! I have just tried using the following words as a google search (choosing search 'the web' rather than just the UK), they are the actual title of the study so should bring up the site. The "Wiley" one seems to give the most information - although it is just a summary of their findings (I have a feeling that the full report might be a bit baffling - even with my new vocabulary of strange medical words!). Here they are:

Abnormal first-trimester ductus venosus blood flow: a risk factor for adverse outcome in fetuses with normal nuchal translucency

Also I think I may of spoken out of turn about the NHS Consultant. He rang me back the next day, was totally on the case and has written a request for the referral for the fetal echo cardiogram which is very reassuring, I must have more faith!

Toppy - I'm the same with not telling many people & its getting very hard even just on a purely practical level as piling on weight and am getting a proper bump already (although thats probably more cake than baby at the moment, it still feels like a total giveaway!). I think I'm going to have to start telling a few more people but we are avoiding telling our 5 year old son for now so that he doesn't have the heartache if it doesn't work out and I don't want him to hear it from someone else. All very complicated!

Do keep us posted & you are so right Kellann its nice to feel you aren't alone!

Take Care
xx

Toppy Tue 05-May-09 17:55:42

Hi - Am reporting back after my 20 week scan at FMC this morning. The sonographer spent ages on the heart given the reverse flow in DV at 12 weeks and also pointed out further Downs markers they look for at 20 weeks (head shape, pockets in the stomach, missing middle little finger bone, clawed hands etc etc) and all the way through she said everything was fine. Then at the very end when I had sat up she said she had something she had to show me - it was a white spot or echogenic focus in the left ventricle which was a soft marker for Downs. Given the lack of any other anomalies she said not to worry at all and that is was nothing but she had to tell me because it was there. I said what about the reverse flow at 12 weeks - she said I was just really unlucky to have both of these and that they were unrelated.
DH trotted off to work fine. I went home sobbing despite all the reassurance. I called my Consultant Cardiologist friend who did manage to calm me down. She said they find these echogenic foci all the time on scans and they can disappear or not even be calcium deposits but pockets of obscurity caused by ribs being in the way etc.
So not the outcome I had hoped for (just really really wanted a 100% prefect scan so I could relax for the next 20 weeks) but then again not too much cause for everyone else's) worry
Am probably going to have to post a thread about Hypoechogenic Foci now - grrrrr

bexincornwall Wed 06-May-09 18:28:18

Hi Toppy - how frustrating that must be, fantastic news on everything else being fine but I can completely understand your anxiety on being given another confusing diagnosis after all the stress from the ductus venosus one. Are you having any more scans now, can you get a more detailed NHS one on the basis of the FMC diagnosis? Its very hard being given information that you have no idea what to do with. I did find the FMC were good when I rang back (twice!) to ask more questions but I was still baffled to be honest.

I spoke to the secretary of the Dr I have been referred to for the fetal cardiac scan. I have found out about seeing the same doctor privately (as a back up plan) and was told today that he doesn't see anyone for this scan until 18 weeks with the NHS, privately I understand it is 16. I really want to find out if they can tell me what I need to know at 16 (presumably they can otherwise why would it be offered) and if thats the case why I can't see the same man at the same stage of pregnancy for the same test with a referral that I already have (a little frustrated - can you tell!!?).

Oh well, will be on the case tomorrow, at least its keeping me busy!

Good luck with finding out about the Hypoechogenic Foci, keep us posted.

Bex

Diege Wed 06-May-09 19:05:06

Hi TOPPY. I've not posted on this thread before but just wanted to reassure you about the echogenic foci. It's seen as an extremely weak soft marker, and has generally been regarded in recent years as of little clinical significance. So much so that it's no longer reported when seen in isolation at 20 weeks scan in wales, and some Trusts in England ( and as you were told, it has no significance when combined with your earlier 12 weeks finding). I had this (and other markers) with dd3, but all was fine. Sonographer said it's one of the most common markers they see, and often see it in adults where it doesn't warrant a mention. Please don't panic about this. I did and it spoiled the pregnancy. Good luck - maybe ring ARC? They are brillaint with the advice they give and know a lot about the echogenic foci. Take care xxx

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