Ventriculomegaly - London specialist recommendations

[snowydayz]

Hello

I had a 27 week scan last night as my baby was diagnosed with 'isolated unilateral borderline vetriculomegaly'. I was sent for an immediate blood test to rule out infection and told to come back for a scan in 4 weeks time.

This was not picked up at my 20 week anomaly scan and I'm concerned something has happened since then to cause this.

I am interested to hear from anyone who has had this diagnosis.

Can anyone recommend a specialist in London to see for further information/monitoring? Can anyone recommend an obstetrician who specialises in this? I am currently being managed by the NHS but want to look at my options to have a consultant monitor the rest of the pregnancy.

I am feeling extremely stressed, worried and alone and need some additional information/expert opinion about what this means and what my options are for the rest of the pregnancy and birth.

Thank you in advance.

I am not sure if this will help you at all but ...I recall seeing this before. I was a mw in london. I don't remember there being a specialist obs in it but that doesn't mean one doesn't exsist. I also recall someone saying the outcome for these babies was good ie normal but i am no expert. I would call your midwife and explain you are anxious, and could you see a dr asap to discuss options. Also ask if there is a dr at your hospital with an interest in scanning and fetal medcine.
I can tell you that if you want the scan repeated the fetal medcine centre is probably one of the best places. But most London hospitals have their own consultants in fetal medcine so it may mean you don't have to change much.

I don't know about London specialists but just wanted to say that my baby had a diagnosis of borderline unilateral ventriculomegaly too - at the 20 week scan the measurement was 9.9 mm so close to the "normal" range but as we were re scanned through the pregnancy it fluctuated up and down. It is apparently normal for the size to change as it is a fluid filled cavity they're measuring so it changes as the head grows- and we're talking about 10ths of millimeters. I was totally panicked about it but the doctors did say that in the vast majority of cases by the time the baby is born the ventricle is back to normal size and sure enough at our 36 week scan it was well within normal limits and an ultrasound of baby's head when he was born confirmed he is totally fine!

Goodness ladies, thank you so much for your prompt responses. I didn't sleep last night and have been so worried and in tears today.

Jmojo I did exactly as you said and spoke to a lovely, knowledgeable midwife in tye fetal medicine unit who is speaking with the specialist dr tonight or tomorrow morning and will call me straight back with a plan, so feeling good that something is happening and my case is being treated seriously.

BuzzyBee33 am so hoping this is the outcome for us. The measurement was 9.6 so I'm hopeful.

The only thing that concerns me is that everything was absolutely normal at my 20 week anomaly scan and I'm quite concerned about what has happened in the last 7 weeks to change things. I get my results of a blood test looking at an infection in the baby in the next few days.

Thank you again. X

BuzzyBee I just wondered how old your little one is now and is he developing normally etc? Did anything happen after your birth eg an ultrasound on his brain? Anything else you suggest I should be doing/asking? Thanks again.

Let us know how you get on! xx

Yes let us know how you get on! I was really worried about the infection screening too in case it was something causing it but I think they just like to cover all bases. My little ones measurement went up to 11 mm at one scan but was 7.4 at 36 weeks so just seemed to go up and down! My baby is 5 months now and developing fine, rolling over and babbling away! The extra tests we had wereultrasounds every 4-6 weeks, a fetal mri to check the rest of the brain was as it should be (at about 24 weeks) and the ultrasound of his brain when he was born- all on the NHS, they were fantastic. It is very scary, I don't know how accurate this is but our consultant said with borderline ventriculomegaly 90% of cases turn out to be totally normal and even within the 10% can be a huge range of outcomes- also more common in boys apparently! So good odds really, though I know it doesn't stop the worry at all.

...I meant to add as well that 9.6 wouldn't even have been flagged up at the hospital we were at the cut off was 9.7 so that's a really good sign!

I found this - it seems to suggest a very good outcome
www.ncbi.nlm.nih.gov/pubmed/9697280

Thanks MissTwister x

Hello, just wanted to write again to see if anyone else has had experience with this condition in pregnancy. I have now had a a second scan, which read 10.4mm which is worrying. I'd love to hear esp from anyone in London with recommendations of specialists/support. Feeling very alone and have so many questions!

BuzzyBee, if you're still there, did your consultant say there would likely be any implications for your little one given that he had the larger ventricles at some point...or did you get the impression that once they were back to their normal size at birth that you could expect normal development (as per any other child where this was not picked up)? If that makes any sense!!

DS1 (now 18 and heading for university) had this. He does have Asperger's syndrome, but to be honest, I think half the family do, whatever their ventricle size. However, that's anecdote not data, and I imagine your best bet would be to go to the Fetal Medicine Centre in London where they usually seem happy to talk things through with you.

Thanks BirdintheWings for the recommendation.

The consultant said that so long as they go down again there is no concern, its just if they keep getting larger (particularly over 15mm) that it can cause problems and that's the reason they rescan to check. In fact he said that because most babies are only scanned at 20 weeks there's probably loads of babies out there who's ventricles went up to larger sizes but no one would ever know! Also it's a relatively new measurement to check apparently so once again, when we were born things like this would never have even been considered! If you have any questions I can help with please just ask, as you can imagine we spoke to loads of doctors and midwives over the weeks as I was in such a state at the time and wanted all the info I could get!

.... I remember thinking at the time that it's amazing that we have modern medicine to have such thorough care before birth but it can also lead to a lot of extra worry!

My DS4 was born with ventriculomegaly. Not diagnosed until birth so don't know about the pregnancy side of things but can tell you what happened after he was born. He's 20 months old now.

Thanks BuzzyBee, yes agree its amazing we have all this information before birth but it does cause a lot of angst...particularly when it seems there isn't actually anything that can be done until birth anyway (if mild VM I guess). I feel like I've stopped enjoying pregnancy and change the topic when people talk to me about the baby and birth. I'm just so worried about this next scan and what it will say.

Ellie, would love to hear your story and how your little one is doing at 20 months. How did it get picked up after birth?

That's exactly how I felt Snowy, I didn't want to buy anything or do any of the fun pregnancy things I thought I would do. I just found that all the enjoyment had gone and I was so worried thinking about what the doctors would see at the next scan. I can say though that when the news started to improve I felt such relief, and having him now it was all worth it!

I didn't want to tell DS4's story in my old post in case you weren't ready to think about the after birth bit yet. But as you asked....

We knew DS4 was going to have a cleft lip from the 20 week scan. The consultant was saying that it's quite common for cleft lips to come with other problems but they never found anything on the scans. He was born at 35 weeks and spent some time in the neonatal unit. The day after he was born the consultant paediatrician noticed that his head was a lot bigger in proportion to the rest of him. She organised an ultrasound of his head which showed ventriculomegaly. He had an MRI scan to confirm this which also showed that his brain was quite immature for his gestation.

They monitored his head growth in outpatients every month and he had another MRI scan at 5 months old. By then we had noticed he wasn't meeting milestones. The MRI showed the ventriculomegaly had got worse. The consultant talked to a paediatric neurosurgeon and between them they decided to do 3 lumbar punctures under general anaesthetic, 2-3 months apart and drain off the extra fluid on his brain. They were expecting the fluid to increase again each time but hopefully gradually get back to normal. So we did that when he was 11 months, 13 months and 16 months. The first 2 lumbar punctures showed no improvement but the 3rd one did. So the consultant decided to leave it a bit longer and do another lumbar puncture and MRI scan. So he had that last week. The 4th lumbar puncture showed the fluid had increased again so now we are waiting to find out what is going to happen next.

At 20 months DS4 is sitting and crawling (slowly). He says several word-like noises. He can drink from a cup and feed himself finger foods. He has beautiful big blue eyes, a gorgeous smile and an infectious laugh. He charms the pants off everyone he meets.

I really feel for you at this awful limbo stage. Although DS4 wasn’t diagnosed with VM until after birth, he was diagnosed with a cleft lip before then so I went through the worry and uncertainty that you are going through now. I’m part of a facebook group for VM and most of the babies diagnosed with VM are absolutely fine and their fluid levels return to normal. For some reason I’ve found that babies who are diagnosed prenatally tend to do better than babies who are diagnosed at birth. Hope that wasn’t too much detail. If you have any questions, just shout and I’ll try and answer.