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Pregnancy

Talk about every stage of pregnancy, from early symptoms to preparing for birth.

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

168 replies

Toppy · 09/03/2009 21:24

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.

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bexincornwall · 07/05/2009 12:16

Hi - great pink news Toppy, how exciting! I'm 15+2 today & had convinced myself I only had to make it through to next week to find out what was going on, looks like I'll have to be a bit more patient (challenging).

The reverse flow was the only marker and as you know at the FMC they look at tons of markers, everything else looked fine. I had a nuchal fold measurement of 1.7mm at 12 weeks which was the same a week later at the NHS scan, plus it had grown in line with dates. Still impossible not to worry. Will update once I've got news on the next scan, hopefully soon!

Diege · 07/05/2009 14:38

Glad I could help a bit TOPPY. I know all too well that awful feeling of dread, then panic, as I've never had a scan that hasn't shown up 'soft markers' (all meaning nothing). In fact I'm currently 33 weeks with no.4 ( a boy after 3 dds!!)and felt the same worries as you after 20 week scan (choroid plexus cysts this time) - what if they'd missed another marker, esp as dd3's marker was only spotted at 25 weeks...I think you get to the stage where you feel there's no end to it, and I had to force myself to stop worrying. What helped me was to e-mail ARC and then print out e-mail to read through every time panic hit.
Congrats on the girl too!! They are great!

bexincornwall · 11/05/2009 18:07

Hi, I've heard today that I will have the fetal cardiac scan on the 22nd May, so only 11 days to wait. Fingers crossed, will update whatever the outcome. Bex.

Toppy · 11/05/2009 19:24

That is great news Bex - keep über busy until then.
I saw my midwife last week and mentioned the two markers at the two private scans and she has referred me to one of the Foetal Consultants at C&W on June 1st - a long wait but I am taking up the offer of a chat just in the hope that it will put my mind at rest. Will of course update
Good luck - I'll look out for you

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Lissy2 · 12/05/2009 12:05

Hello, I am new to this site and had my 12 week scan at FMC yesterday and am so thankful that I am not the only one who is completely confused about ductus venosus reverse flow (congratulations to you for who its turned out to be nothing!) I am 36 and having twins via IVF. One twin got a vv low risk (1 in 7000_ and no positive markers for downs and whilst the other also got a low risk (1 in 1471), they identified one positive marker-this reverse flow thing. I was not told anything more than it might suggest an abnormality or it might resolve it, plus I could not understand what the female Bulgarian doctor was saying a lot of the time! Plus on my result there was reference to trisomy 13/18 which showed an even worse result of 1 in 776. My searches on the internet say 80% of babies with reverse flow are Downs so now wondering whether I will be in the other 5% which are supposed to be normal? My other half is calling FMC again today to ask if we can see someone to take us through the implications.I am going to UCH tomorrow for my NHS scan and although initially I thought I did not want the stress of a second nuchal scan in case I got worse results I have decided to do it again and see what they say. I feel very depressend and what was meant to be a great week announcing my pregancy is turning into a terrible week.I do not even know if the type of heart defect which reverse flow causes can be terminal? I just wondered where the 26% of babies being ok figure comes from as I am finding it difficult not to cry all day!

Lissy2 · 12/05/2009 12:08

Sorry meant to say I was told it might resolve itself and I would have to wait until 20 weeks to find out...

bexincornwall · 12/05/2009 13:32

Hi Lissy2, sorry to hear you've got this worry too. I think you may have had the same doctor as us as we found ours very difficult to understand - I did however get two subsequent doctors to speak to on the phone who were very helpful in clarifying stuff for us.

The 26% figure mentioned on this thread is actually a 26% negative outcome in a specific study we found (meaning 74% were ok, has to be a good thing). This was in a medical study which looked at the diagnosis of reverse or absent flow in the ductus venosus in foetuses with a normal nuchal translucency (so only relevant when nuchal translucency is a certain measurement, also as far as I can tell they then didn't include a proportion of the subjects who had reverse flow plus other issues or markers, its hard to tell?). Anyway, there is an abstract of this study which can be found by putting the following quote into google:

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

I found on google ("the web", not just "the UK") the version which is easiest to read is the "Wiley" one which is listed second, not sure if that will always be the case.

As I've mentioned on here I have now got an NHS referral to a fetal cardiologist for a fetal cardiac scan (or fetal echo cardiogram) which I have heard can be done from 16 weeks or 18 weeks (different info from different places), but it means that I haven't had to wait for the extra time which is great as its been a challenging few weeks.

Lastly as far as I understand the reverse flow itself is just an indication of a possible heart problem not the actual cause of it so it can indicate a wide variety of issues, some a lot less severe than others.

Sorry for going on - but I know I just wanted to find out as much as anyone knew - hope its helpful anyway & good luck with it all.

Toppy · 12/05/2009 14:21

Lissy2 - firstly MASSIVE congrats on your IVF pregnancy. I am sure you have been through enough worry so far so it is upsetting to be faced with yet another unknown.
Secondly, other than the twins you are in exactly the same situation as I was 9 weeks ago. EXACTLY the same, so I feel I can comment with relevance - even down to sometimes not quite being able to clearly understand some of the FMC sonographers. I really feel the Centre is the best place to be and heavy accents are my only criticism.
Like you I was also told not to worry but that all I could do was wait until 20 weeks. I had that 20 week scan last week and the whole question mark over what the reverse flow means seems to have gone away (I do have another very soft marker but apparently it is unrelated and I am just very unlucky to have had one at each scan). Its not that the flow has altered as they do not check it again at 20 weeks - they just do a REALLY detailed heart scan and check for other Downs markers that aren't very visible at 12 weeks and nothing (other than this soft marker) was out of the ordinary

The reverse flow in isolation is considered to be a soft marker. The NHS rarely scan for it as it is extremely difficult to scan and even then get right - it can be very prone to human error.
Your husband is doing the right thing by calling for a chat - for some stupid reason I could not face making the call back to the FMC. I sort of felt unable to talk to the bringers of what I saw as very bad news. I was devastated when we got that marker and wondered how I would cope until the 20 week scan. I did call Chelsea and Westminster and the ARC helpline and they made me feel much better.
Luckily your NHS scan is tomorrow whereas I had already had mine. If you re-read the whole thread Kellan has had the same thing and UCH did scan the DV so you will not only get a second opinion but also a chance to talk through it now you have had a couple of days to absorb the news from FMC

Your risk for Downs is very low. Mine was about the same and my risk for Edwards and Patau was also 1 in 700. These make it not worth the risk of CVS in my opinion. Also Edwards and Patau are much easier to physically see on a scan - the babies tend to not grow at the right rate and are usually positively identified before birth (a close friend who happens to be a doctor was pregnant with a baby with Edwards so I did have little chat to her about it at the time) before birth.

Here is something interesting. I had a 1 in 2000 chance of Downs at FMC. Therefore I assumed that my NHS risk would be a lot lower as they did not pick up the reverse flow. When I finally got it back my NHS risk was exactly the same. This confirms that in isolation it should not give cause for concern from a Downs risk.
Like you the thing I then fretted about was what heart implications there might be. When I went back to the FMC the sonographer told me that reverse flow in the DV on its own rarely implied heart problems - only if in conjunction with other classic heart defect markers which tend to be more obvious. You only had this one marker so hopefully 'it is nothing' though I know it will not feel like nothing to you.

Lordy I have actually written an essay here - mostly because I hope it will help you to try and enjoy the next 8 weeks - all sort of lovely things are going to happen like getting a bump and feeling the first flutters and it really probably is nothing so it would be such a shame if you fretted the weeks away. I felt very low for a couple of weeks after my 12 week scan then just kept myself busy. I also felt unable to break the good news that I was pg without needing to qualify it with the existence of a negative marker. 9 weeks later I am pretty much happy. If anything were badly wrong they would have picked it up and anything that still might be wrong (and this is a possibility for EVERYONE, not just us guys with the odd marker) will be dealable with. Keep us up to date and best of luck tomorrow. try and clarify your thoughts so you get to ask all the questions you want tomorrow. I am sure UCH are going to be brilliant

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Lissy2 · 12/05/2009 14:22

Bex, thank you so so much for such a quick response. I feel better already and have been reading the articles and am pleased that there may be some light at the end of this!! I think was in shock yesterday. We are waiting to a call back from FMC. I hope everything goes well for you at 16 weeks. I am going to ask for an earlier scan with my hospital too on the basis that I am higher risk anyway with twins and see what they say.Good luck with yours too.

Lissy2 · 12/05/2009 14:46

Toppy (did not see your response until a minute ago) and Bex I could give you both massive hugs. I can not tell you what a lift this has given me such that I am going to get chocolate imeediately to celebrate that my baby may not die/be disabled. I have had a dreadful night and spent most of it shouting at DH for the difficulty of going through IVF then this! You are right about the babies. i have disengaged a bit from them because of yesterday and have not looked at my photos from the scan. Will let you know what I find out!!

Toppy · 13/05/2009 20:40

Hi Lissy2 - been thinking about you today. Were UCH helpful? I really hope so and hope you are feeling brighter

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WW2009 · 21/05/2009 14:28

Hello everyone,
I am new to this thread. Thank you all for you messages, they have been reassuring. I am now in the same boat as you all, all markers being normal bar the DV.

I had my 12 week scan at the Chelsea & Westminster(C&W) on Tuesday. According to them, they could only do the Nuchal Test (NT) without the blood test because I had a failed twin pregnancy at week 6/7. This failed twin pregnancy they were did not detect when I went into A&E as I was bleeding in week 6. They scanned me and did a horrible internal examination and found nothing wrong. I then went privately (The Portman Consulting Rooms) and there, a consultant Obstetrician discovered the empty leaking sack, below the healthy sack which had a baby.
So, with the NT alone, my risk was 1:2645, which is very good. Nonetheless, because I do not trust the sonographer at the C&W (who did not see that I had lost a baby in the first instance - she was in a hurry to see other patients, had a look around, found a baby, all is good, you can go now!) I decided to go to FMC by referal from my lovely consultant at the Portman.

So, after a 4 hour wait for my scan, my risk for Down's Syndrome is 1:9245 which is very good. I am not worried about Down's Syndrome anymore. However, being told that the Ductus Venosus is in reverse flow and that it could mean a heart defect but that I shouldn't worry, was rather disconcerting! How can a heart defect be ok and nothing to worry about? I insisted for a further explanation when Prof Nicolaides made his whirlwind visit and all he said was: If you are rational rather than emotional parents I would get out of here, your baby is fine (or something in that vein). So, I was left with what the Bulgarian sonographer (who was very nice and chatty) had said, that it was nothing to worry about and that I should SIMPLY make sure that at week 20 I ask for the heart to be properly examined... How was that meant to give me closure???

Like most of you, I got home and searched the net. Most of it was Chinese to me and for medical eyes only. My DH, who has now nicknamed me WW (Worrying Wife!), fell asleep on the sofa while I was searching the net and panicking!

This morning I called ARC and they told me that the FMC are the best around and that if they thought it was very serious, they would have said something and suggested an eco-cardiogram. She then said she was not a doctor and it would be best I call the FMC back to speak with a doctor there.

So here I am now, having called the FMC and waiting for them to call me back. When that will be is another question.

My DH is still calling me WW and thinks that I am being over the top and that our baby will be perfect.

I will update you when I hear back.
In the meatime, I wish you all well and lets try and stop worrying, its not good for the baby after all!

WW2009 · 21/05/2009 16:00

Hello again,

As promised, I would let you know once I spoke to FMC again. I just got a call back from one of the doctors there.

I have been massively reassured. I was told that with just one marker, the ductus venosus reverse flow, I should not worry. The problem arises when the foetus has 3 markers which together indicate a high chance of a heart defect. They are as follows:

  • If the heart was leaking
and
  • If the NT was large
and
  • Ductus Venosus - reverse flow

With just this final marker, the chances are very slim for a heart defect. Although the doctor could not give me 100% assurance that my baby will have a perfectly normal heart, she told me that I should stop worrying and begin to enjoy my pregnancy.

I did ask her if I could have an echo-cardiogram if I asked for one and she said that they do have an amazing Cardiac doctor there who works on Wednesdays after 17:30 and that I could do this at 16 weeks. However, they would stil have to recheck at 20 weeks as the heart is still quite small at 16 weeks. She said that if I had more than one marker, she would have referred me straight away.

So girls... lets try not to worry hey?
Its easy to say since I have been crying all night and all morning but I feel better now.

I will update this site with any furhter developments and when I have had my 20 week scan.

LOL

Toppy · 21/05/2009 22:20

Hello WW2009 - thank you so much for sharing your experience on this thread which must be now surely be the most comprehensive case study of reverse flow in DV anywhere on the internet. I think all of our combined googling will back that up!
You had exactly the same experience as me at 12 weeks and I just WISH I had called FMC back after speaking to ARC and C&W as I did spend the next 8 weeks terribly worried and in slight denial about the pregnancy. Prof N is a god in my book (did you just see him on C4 doing foetal surgery !) but I understand from my sister in law that his bedside manner is a little abrupt. I can forgive him that for being the expert of experts.
Your feedback will the give rest of the posters and future readers of this thread lots of reassurance which is something we should all be able to get from our sonographers at the time of scan. I really hope you can settle back into your pregnancy and enjoy it.

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Lissy2 · 22/05/2009 10:34

Hello again and sorry for being incommunicado, and thank you for thinking of me! Was feeling exhausted and emotional after second set of tests at UCH last week and was banned from the internet at home by DH for one week-but now I am secretly on at work! UCH were fab. I confessed to having a private scan at FMC and they laughed and said that would only cause chaos as my results would be different at UCH because they had a different lab etc etc and I would worry more but they would test me anyway. The mid-wife hugged me and said potential mum's are lunatics which made me feel better. I explained to them I had reverse flow in one twin and the sonographer shrugged his shoulders and said that was nothing to worry about at the moment.

They then did the scan and spotted the reverse flow too but said in 95% of cases it resolves itself. I asked how soon it was possible to determine whether there was a problem. They are going to give me an echogram (spelling dreadful) at 16 weeks but said it might not have resolved itself by then and it could take until 20 weeks. They also confirmed the 95% figure in writing when they wrote to me to confirm my results (results were more or less the same as FMC). For some reason having it in writing made me feel better! UCH even rang me the next day to ask if I was feeling better-amazing!

Interestingly many of the sonographers who work at FMC work at UCH so if I had known that I would have just stuck with UCH, but never mind. We actually passed the Bulgarian lady who scanned me at FMC in the corridor at UCH. The guy who scanned me at UCH said FMC were excellent and that she in particular was fantastic and very senior. He said that when looking at scan results consultants do not read the small print, they just look at the overall risk and then see who did the scan and that tells them more than anything. They said that if all other markers were absent reverse flow was not such a problem in itself that they needed to do anything now-they said if it were a problem they would not be sending people away telling them to come back in 16/20 weeks.

The next day my DH got a call back from FMC about our results and got through to the Bulgarian doctor. She was very reassuring and said it is more likely than not to b ok and to relax.

What a rollercoaster!

Lissy2 · 22/05/2009 10:44

I forgot to add that we asked UCH and FMC why we were given risk figures on our FMC results for trisomy 13/18 which were not great but no mention of it was made in the FMC summary. UCH said that FMC do those calculations as a matter of course, because it's a tack on to their down's test-ie they use the same software to calculate 13/18 risk but it is not as definitive as the down's test and not to worry. FMC also confirmed that and said that 13/18 was often visible on the scan at 12 weeks whereas downs was not. The conclusion is, I think, that the scan is more trustworthy than the scores you get on your FMC results for 13/18 and if there is nothing showing 13/18 on the scan at 12 weeks then it's probably ok.

Toppy · 22/05/2009 17:37

Hey lissy2 - that all sounds very reassuring. In fact it seems you could not have asked for more. Can't believe UCH called you to check you were okay - how lovely of them. Lol at you being banned from the internet. Your DH is probably right. Enjoy the next few weeks

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bexincornwall · 23/05/2009 09:01

Hi everyone - just wanted to update following our fetal cardiac scan at 17+3. Apparently everything is fine with the babys heart! Five weeks of stress, anxiety and worry plus hiding the pregnancy from everyone (am sure my behaviour has been baffling everyone, plus they are probably wondering who should tell me I've clearly been eating too many pasties!), thankfully has come to nothing.

We went to Bristol (so spent 7 hours driving yesterday), had a brief but thorough scan with the fetal heart specialist and he in all honesty was quite dismissive of the reverse flow diagnosis in isolation. Although he does recognise that it can be an indicator of potential issues he said that he wouldn't look for it during yesterdays scan. I'm presuming from that that it could still be there but without anything else it wouldn't concern him.

Now I'm going to have to organise my 20 week NHS scan to check everything else but for now am going to try and finally start enjoying this pregnancy. Good luck with all of your pregnancies and I'll update again at the 20 week.

Toppy · 24/05/2009 19:14

Hurrah - brilliant news Bex and you really don't have long to wait until your 20 week scan. I can't believe the worry we have all been going through with the existence of this marker and how it can completely cast a shadow over what should be the most joyous of situations. Enjoy it from hereon in

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rosieinchile · 09/06/2009 03:27

Hello Ladies,
I haven't posted here before, but have been following this thread since the beginning and am writing in hopes of helping to relieve someones anxiety. I am from the US and am living in Santiago, Chile, pregnant with DD #2. The doctors I see here are excellent, having been trained in London and the US. Top quality.

At my 12 week scan the sonographer told me about the reverse flow DV, and I just had a 16 week scan today, and everything is fine. He said the same thing that others have said here--at 12 weeks it means nothing on its own. He checked again today and it's fine, it fixed itself.

The analogy we came up with is this: newborn babies have trouble getting their eyes to work together sometimes--new hearts have trouble getting all their parts to work together sometimes.

Good luck to all of you.

Toppy · 09/06/2009 14:16

Hi Rosie - thanks for adding your experience. I can't believe you are reading MN from Chile! I am really glad you have had a good 16 week scan. It just confirms that an isolated marker like reverse flow should not give too much cause for concern.
A little update from me - I went to see the lovely Keith Duncan at Chelsea and Westminster last week to have a chat about my two isolated markers at the 12 and 20 week scan as I still could not get my head round the fact that they are apparently unrelated. He said the medical profession got terrribly excited about reverse flow as a marker 7 years ago but that it is so subject to human error and also if there does tend to sort itself out so not to worry about that at all.
As for my echogenic foci at the 20 week scan (should anybody ever do a search on this and end up at this thread) he said the technology is so sensitive these days that he gets all sorts of bounce backs of the waves and is getting white patches all over his scans. He said it can be caused by your physiology and almost certainly is not a calcium deposit in the heart which the FMC sonographer did raise as a possibility. So I do feel reassured now.

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rosieinchile · 18/06/2009 23:15

Toppy--this is the only place I could find anything that wasn't very technical. This post has nothing to do with reverse flow, but perhaps someone reading it can find a bit of solace.

As for the medical profession, technology has changed quite rapidly in the last few years and so many things show up on scans that the doctors and technologists, even the best ones, see things that they haven't seen before and for which there aren't many (or any) studies.

My mom had breast cancer several years ago and they have found, after a series of unrelated tests, that she has a sort of lump on her heart and so had to do a whole other series of tests--result: she has a sort of lump on her heart that has probably always been there and means nothing.

My first daughter was born with a neuroblastoma (a cancer), discovered at 32 weeks gestation, and after months of emotional agony and a surgery at 3 mos, the biopsy showed it would have disappeared on its own. It's a very dangerous cancer for some children, but in most children under one year old it disappears. The oncologist told us that with all the modern technology, the mortality rate is the same as before the scans existed, but that the intervention (surgery, chemotherapy) rates have skyrocketed.

My point is that all of these scans are good to an extent--they save many lives and allow for preventative surgery, but they are also unnecessarily frightening in many cases due to lack of information/communication. In the case of my mom, a breast scan saved her life, but the heart scan was unnecessary, and as for my daughter, the scan caused nothing but distress.

And one final point--all of these procedures have cost us a lot of money, both here in Chile and with my mom in the US, so I urge you to always fight for your NHS, never let them take it away form you.

rosieinchile · 18/06/2009 23:15

Toppy--this is the only place I could find anything that wasn't very technical. This post has nothing to do with reverse flow, but perhaps someone reading it can find a bit of solace.

As for the medical profession, technology has changed quite rapidly in the last few years and so many things show up on scans that the doctors and technologists, even the best ones, see things that they haven't seen before and for which there aren't many (or any) studies.

My mom had breast cancer several years ago and they have found, after a series of unrelated tests, that she has a sort of lump on her heart and so had to do a whole other series of tests--result: she has a sort of lump on her heart that has probably always been there and means nothing.

My first daughter was born with a neuroblastoma (a cancer), discovered at 32 weeks gestation, and after months of emotional agony and a surgery at 3 mos, the biopsy showed it would have disappeared on its own. It's a very dangerous cancer for some children, but in most children under one year old it disappears. The oncologist told us that with all the modern technology, the mortality rate is the same as before the scans existed, but that the intervention (surgery, chemotherapy) rates have skyrocketed.

My point is that all of these scans are good to an extent--they save many lives and allow for preventative surgery, but they are also unnecessarily frightening in many cases due to lack of information/communication. In the case of my mom, a breast scan saved her life, but the heart scan was unnecessary, and as for my daughter, the scan caused nothing but distress.

And one final point--all of these procedures have cost us a lot of money, both here in Chile and with my mom in the US, so I urge you to always fight for your NHS, never let them take it away form you.

Lissy2 · 20/06/2009 19:45

Dear All, I think I really must have a pregnancy brain as I posted a message on Thursday but nothing is showing!Toppy you should look at going into the medical profession full time after this thread is completed and I am very glad for you Bex that all is well and you can now show off your bump. I had my cardiogram on both twins (although twin 1 was the one with reverse flow) on Tuesday at 17 weeks and 5 and all was normal. 2 heart specialists from Great O street, a FMC UCH consultant, midwife, sonographer and student were in the room. It was very daunting at first with so many people but within about 15 mins they confirmed that the reverse flow had corrected itself (they concentrated more on the heart structure rather than the flow) and the hearts looked normal though I need a re-check at 24 weeks as they are slightly smaller than a single baby as there are 2 of them in there. They did a quick check of them generally and all looked fine. I had a beer to celebrate afterwards as it was such a great day and thought i felt a flutter for the first time that evening but I think that was pyschological as have had nothing since. I can not believe what a difference it has made to my outlook on the pregnancy, I just hope there are no more surprises down the line! Will report back at 20 weeks!xxx

bexincornwall · 30/06/2009 16:55

Hello - just thought I'd update after my 20 weeks (well it was 22 week actually!) NHS scan to say everything looks fine - the baby is the right size with all the right bits in all the right places. It turns out we're having another boy & its great finally to feel like I can connect with this baby (poor thing has been largely ignored - although I've looked after myself obviously!).

I also wanted to say good luck to all the ladies who are going through this right now or who have found this thread and I hope reading it through to find all the positive outcomes will be reassuring. It was an awful couple of months for us with all the worry but right now it looks like we're ok, so fingers crossed for the rest of the pregnancy and birth..

Will check in and see how you are all doing & update again in October. xx