Bilateral ventriculomegaly

[BabyO21]

Hi everyone,
Looking for some advice/reassurance.
I had a scan at a private clinic yesterday (I'm 27 weeks) so that my mum and dad could see the baby. Unfortunately this idyllic scenario of them seeing their first grandchild was crushed when the sonographer informed us there was fluid on the baby's brain that concerned them. The notes I received after said bilateral ventriculomegaly. We were not given any measurements of any further information as they said it was not a diagnostic scan. All we were told was, it could be from an infection but you need to speak to the hospital. I have an appointment tomorrow for an ultrasound but I can't stop beating myself up that it could be toxoplasmosis and my fault that this has happened to him. Honestly just heartbroken.
Any advice or positive stories would be so helpful right now!
Thank you ❤️

Hi @BabyO21 no experience of this but wanted to bump for you. How did the ultrasound go? Hope all is well x

Bless you @iverunoutofinspiration thank you so much. The ultrasound showed his front ventricles are measuring 14.4mm (anything above 10mm is considered abnormal) so we're being referred to a specialist. Everything else is measuring perfect which is great news, but we're so panicky about these ventricles. Luckily we've found a Facebook group for people who have/are going through the same and we've read some very positive stories, but we're still having our moments of intense sadness and worry x

@BabyO21 are they offering TORCH tests? I hope all works out, I know how difficult these experiences can be xx

@iverunoutofinspiration I think I may have had that yesterday too, I had a blood test but as this was after getting the information from the doctor I don't think I listened properly to what what happening. I'm extremely concerned it's toxoplasmosis as we have cats, although I have been careful since being pregnant. Trying to not overthink this at the moment though xx

@BabyO21 I hope it all works out for you - try not let your mind wander (easier said than done!). from what I've read, sometimes the fluid level does seem to fluctuate so hopefully that's the case with you and all will be well by the time baby comes.

@iverunoutofinspiration thank you so much 💙 I really appreciate you checking in, have a lovely evening xx

@BabyO21
I really hope it will sort itself out! Was everything measuring good at the 20 weeks?

Hi @Loki01 yes, everything looked great at 20 weeks. I also had a private reassurance scan at 22 weeks and they checked his brain and nothing was picked up then either. I could have completely misheard the midwife at our scan on Saturday, but I'm sure she said they don't actually check the front two ventricles (which are my baby's enlarged ones) at the twenty week scan. Have an appointment with a specialist in Leeds tomorrow so keeping everything crossed he's okay 💙

Hi,

I didn't want to read and run so just to say that we had something very similar when I was pregnant with my son. It completely floored me and like you I spent lots of time worrying about whether I had done anything to contribute. We had an MRI when I was 23 weeks and then ultrasounds every 2 weeks from then on. The problem resolved itself naturally and when they did an ultrasound when he was a couple of days old it was all fine. Midwife said that not long ago they wouldn't have ever checked in a scan so we would have never known! He might have a developmental delay of some kind one day (although don't think we would ever be able to tell if it was because of the VM or not!). So I know 100% what you are feeling right now and have got my fingers crossed it's all ok for you. The specialists we saw at Manchester and Sheffield were beyond excellent. Take care xxx

@BabyO21 The lateral right and left? I am not a sonographer but I thought they did.
Let me know, will be thinking of you. How scary! You do your 20 weeks, think all is ok and now this.

@ABC001 wow thank you so much for sharing your story! It really is the most scary time, but hearing other people's experiences is what is pulling us through at the moment. Do you mind me asking what your son's vents were measuring at? We're preparing ourselves to be told that they're bigger tomorrow (and crossing everything that they're smaller). I'm so, so glad to hear that you're son is okay now, best of luck to you and your family in the future ❤️ xx

Hi OP,

What a stressful time for you!

We all produce CSF which is a liquid which protects the brain and spine.

There are a handful of children whose CSF is not absorbed at the same rate as it is produced, which can cause large bi-lateral ventricles (and sometimes the third ventricle and a few other areas round the brain). A knock on consequence can be a large head.

This usually rectifies itself, sometimes before birth. Or in my daughter's case the neurosurgeon said by the time she is 2 years old.

It wasn't picked up at any of the scans I had with my daughter but when she was 8 weeks old the GP measured her head and it was well above the 99th centile.

After an ultrasound on my daughters head, opthamology (eye) appointments and an MRI under GA, all malign causes were ruled out.

We went the LGI for these appointments and our neurosurgeon was Dr Tyagi and there was a great neurosurgery nurse Louise Higgins I think. They were really good. Make a note of any questions you have before you go and don't worry about how long your list of questions is!

Wishing you all the best. X

Oh and I should add my daughter is fine. 10 months now - no developmental delays. Just a very cheeky monkey.

No worries OP, it helped me hearing from other people too! My son had one ventricle measuring about 13mm and the other was below 10mm so they weren't worried about that one. He gets his head measured now every couple of months as it is big but not noticeable! I think they like to keep an eye on the kids as they grow up because they actually haven't got a huge amount of data about milder cases which resolve themselves and what the long term outcomes are. So even though I panic every time the measurement is bigger (it's normally because he wouldn't sit still for the poor health visitor!) I tell myself we are helping get more info for other families so it's a good thing! Best of luck for tomorrow xxx

@gavala thank you so much for that! I'm so glad to hear your little girl is doing so well! I really empathise for everyone in any situation like this, I've never felt so helpless in my life! I'm so glad to hear you had a great experience with LGI too, been trying to think of questions all day because I know my mind will go blank tomorrow! Xx

@abc001 thank you for your help! It's just so helpful hearing these stories when the future seems so confusing at the moment. I'm pretty sure everyone else is the same, but we'd never heard of VM until Saturday, so when we were told 'fluid on the brain' we just thought the worst. It's so reassuring to know that's not the case! Xx

@BabyO21 hi OP how are you getting on?

My 8 year-old has severe ventriculomegaly, was 24 and 23mm last time he had an MRI scan when he was 6. He has moderate learning difficulties but is doing well in mainstream school.

so I’m 21 weeks pregnant and at my 20 week scan they found some fluid on my baby’s brain, so now being 21 weeks, the fluid hasn’t increased or decreased. I’m concerned coz I don’t know what to expect, the left side has 11.1mm and the right side is 12.5mm this is on the mild to moderate side of things. Those who have given birth to their children who suffered with this, how are things with them. I’d love to know your stories

@Blondie831 My ds is now 12, born with severe ventriculomegaly. He has learning disabilities but is thriving in mainstream secondary school with an ehcp. He plays the piano (not as good as other children his age but he loves it) and loves science and wants to be a plumber when he grows up. He is so enthusiastic about school and the deputy head recently described him as an absolute joy.