Mild ventriculomegaly

[LWestYorks]

Hi,

Just after a bit of reassurance/hand hold. I had a growth scan on Tuesday at 23 weeks due to his abdominal circumference measuring on the top centile, whilst in the scan the consultant also spotted that one of his ventricals were 10.5mm (normal is 10mm>) so obviously this has come as a massive shock.

We had an appointment with fetal medicine today who has confirmed the fluid is still 10.5 and the other side is normal, the specialist couldn’t see anything else on the scan for any abnormalities etc, she discussed the amnio which we decided to have to rule out downs, Edwards etc and then I have another scan on the 17th July to check on the fluid level. I’m also having an MRI but that hasn’t been booked in yet.

I have felt really rubbish this week as it’s come as a massive shock. Has anyone been through anything similar?

thank you x

Okay so... we had this. I went for my 20 week scan. It was covid and in lockdown so had to attend alone. One of my sons ventricles was measuring larger than normal. (Can't remember exact number). We were referred to feral medicine at another hospital. We went for our appointment and no other abnormalities were found. We were offered an amino but I wanted a second opinion so we went back and saw another consultant who said although it was larger it was still low. We decided to book a further private scan at a clinic at 29 weeks and the size of the ventricle had returned to normal.
My son is now 2.5 and is perfectly fine.
I was so disappointed at the treatment that the feral medicine consultant gave. She was discussing late termination and downs.
I didn't go amnio of the risk. Myself and my partner had decided whatever the result we would be keeping the baby as by this point I was nearly 23 weeks and would never have been able to go through with a termination this late on.
I have shared my positive outcome so please try not to panic. Go for second opinions before making any decisions. Best of luck x

Awww never posted before but wanted to message as we have just been through/are going through this. Like you we got a borderline measurement (10.3mm) at our 20 week scan (no other abnormalities or indicators of chromosomal issues picked up) and had a follow up appointment with fetal medicine two days later. That scan showed our baby's vents were back down to 7mm. The consultant said if we'd gone for our anomaly scan that day we'd be none the wiser! Anyway, we were offered the blood test (for Cmv/toxoplasmosis), MRI and option of amnio if we wanted it. We decided to have blood test and MRI as first port of call as neither invasive and the MRI would check all other structures in his brain. Had that the following week with follow up at FM to discuss results two weeks later. Had another ultrasound at that appointment which showed vents under again. Met with the consultant to discuss MRI, all structures of brain normal but confirmed vents at 10mm! So diagnosed isolated borderline ventriculomegaly. We were offered the option of amnio again but the consultant really didn't want to carry this out until 30-32 weeks (I was about 24 weeks by this point). That seemed like a long time to wait so we paid for a private NIPT (didn't qualify for one on NHS as we only had one indicator - the enlarged ventricles - and this trust only offer it if there are two (maybe three) or more. NIPT came back low risk and the private scan I had when I went for the test showed vents at 7mm! By this point we're thinking that on the balance of everything, whilst the enlarged ventricles could be an indicator of something else, with the NIPT results and everything else we have about the same chance of something being up as the general population etc.

Fast forward to last week and we had our last appointment with fetal medicine - vents under again so they have signed us off. Obviously baby isnt here yet so we won't know how he is until he arrives but after weeks of turmoil and feeling exactly like you we are much more at peace with everything. I totally understand how worried you are and would strongly suggest joining the Ventriculomegaly Facebook group, it's really useful and reassuring. As someone said on there, ventriculomegaly isn't a diagnosis but an ultrasound finding that could be (but not always) associated with something else. There's loads of stories on there of babies with severe ventriculomegaly and even elements of their brain missing and they are absolutely fine. Sending hugs, it's such a scary time and so exhausting waiting and waiting and waiting for each appointment and scan and finding x

P.S we didn't go for amnio in the end as NIPT results were low risk and we also didn't really see the point finding out so late in the pregnancy. We wouldn't have terminated that late on so for us it wasn't worth it.

We had a measurement of 11 at 20 weeks and it went down shortly after. It's so worrying isn't it. Our boy is absolutely fine and the measurement just went down. If you are having a boy (we didn't know the sex or want to) then it's even more common. Try not worry but I know you will as I did. I joined a group on fb which reassured me especially with a very low measurement like yours.

Apologies just saw you are having a boy. It's all sounding very positive, lovely. I think his measurement will go down just like my sons did. Even if it didn't If it stayed in the low range it won't cause any issues. On the fb even babies with much higher numbers have been fine.

10.5 is really low, and it's so, so positive that it hasn't increased! My son was diagnosed with moderate VM at 27 weeks (14.4mm) and at a scan just 3 days later they had increased to 20mm. Sadly, a lot of other issues were found with my little boys brain and we lost him (TFMR 💔) the ventriculomegaly wasn't anywhere close to the severity of the other issues with his brain.
However, during the wait for results etc we joined the ventriculomegaly Facebook page. We found it hugely reassuring when we thought that was all we were dealing with. There were babies on that page with vents 50-60mm and thriving! It brought us so much peace.
So please try and remember that 10.5 is only just out of the catchment zone. And try and imagine just how tiny a 0.5mm is, there's a very high chance it's being measured slightly inaccurately which can happen.
However, I completely empathise with the worry. Sending so much love xxx

Thank you for the responses and your lovely comments, I’ve really struggled this week since getting told that on Tuesday and having to go to the Fetal Medicine unit. Hopefully I get my amnio results back on Monday and we can go from there. I just can’t stop worrying and just feel so anxious it’s an awful feeling isn’t it. I’m not on Facebook but I have seen on other posts people mentioning that group so I may have to join up for it.

I’m just praying for good news early this week and take things step by step, after that my next scan is the 17th July then after that an MRI wilL be booked in where I’ll be between 28-30 weeks. X

Hi OP, just noticed your name says West Yorks, I'm also from West Yorkshire and was dealt with at Leeds fetal medicine, MRI in Leeds etc. If you want a chat about anything do feel free to PM me x

@Littlelighthouse yes can I message you? That’s where I went…x

@LWestYorks of course! X

Hi ladies! So I’ve had the first set of amnio results back for Downs, Edwards and Patau which are all normal. Just got to wait for the rest of the chromosomes to come back as they take longer with being more rare. X

@LWestYorks hey! Can I ask how your baby was? I’ve just had a scan last week and my baby got diagnosed with his left ventricle being enlarged they got two different measurements , one 10.7mm and another 11.7mm so between them two numbers.

just looking for some support

@BusyJadeBiscuit Hey! So my little boy is 2 next week, and he’s fine…. He’s hitting all milestones apart from talking but I’m not too concerned about that just yet. He was absolutely fine when he was born, I was absolutely beside myself with worry the whole of my pregnancy and it was bloody awful but this forum really really helped me. Your measurements were similar to mine and my sons stayed the same (thankfully didn’t get bigger) then started lowering as my pregnancy went on and around 35 weeks ish fetal medicine signed me off. They were absolutely amazing throughout the whole of my pregnancy.

What are the next steps for you? Please try and not to worry, so many people on these forums said it to me but my pregnancy was awful I just worried the whole way through. X

thank you for your story this has helped so much, I have our first fetal medicine scan tomorrow hopefully we will find out more then, it’s just we found out at 29 weeks and it didn’t show up on our 20 week scan which is crazy. I think it was the initial shock and I cried for two days. It was horrible, but I’m trying to think positive, I’m having a little boy too and it seems common in boys?

im so glad these forums exist as I have been beside myself with worry, and I just hope everything’s okay, he’s our little miracle after 5 years of trying and a fertility clinic conception, so it’s nice to hear your positive story. I’m definitely worrying loads,

@BusyJadeBiscuit yes it is more common in boys I think. Fetal medicine really were amazing with me, I had scans every 2 weeks to monitor the fluid, they are so so thorough and they will go through everything with you. Where do you live? Which FM are you going to? When on these forums a lot of people didn’t have the amnio (which is fine, each to their own) but I just felt better wanting everything, they will always give you worst case scenarios but do what’s best for you.

Please don’t worry I’m sure everything will be absolutely fine, I always think to myself if I wouldn’t have had a growth scan because of his belly measurements I would have been none the wiser? so I’m pretty sure that so many babies will have a little extra fluid and will be born with parents not having a clue. If you have any other questions feel free to send me a message - like I said earlier these forums really helped me during pregnancy.

@LWestYorks I love in Somerset so going to Bristol fetal medicine, I also have gestational diabetes so he’s ensuring larger with that and he’s on the 97th percentile already. So he has a large head and stomach, but they don’t seem worried about that because of the GD.

if I didn’t have that growth scam I would be none the wiser,

please do message me as it won’t let me message you?

Hello! Just wanted to post on here our experience as I found it hard to stay positive during my pregnancy after a routine growth scan at 26 weeks turned into a pretty scary time for us and meant referral to bristol FMU for mild ventriculomegaly on one side. I also had GDM and was on insulin. We met with the FM consultant who went through possible causes and outcomes and to be honest it was heart breaking. I took time off work to process it all. We decided to do the bloods to rule out infections and then a MRI scan to look at the baby's brain. The blood work and the MRI were clear and I didn't want to do the amnio because of the risk of miscarriage. The excess fluid in the brain eventually reduced to within the normal range after several weeks and we were discharged from FMU at 35 weeks. Our baby is now a happy and cheeky 9 month old.

I went for my anatomy scan and was given the same information. I went to fetal medicine and they confirmed the same. They offered me the amnio and I refused and asked for a second opinion. I then booked a private anatomy scan at window to the womb and they found the measurements to be within normal range. I went back for the second opinion at fetal medicine and measurements found to be normal. My baby is now 5 years old and was perfectly healthy!
Please seek a second opinion before opting for further tests that can cause a miscarriage. Good luck. I know the feeling and it’s awful. X