Borderline bilateral ventriculomegaly at 22w - support thread!

[janey1975]

Sweetk1, Thanks for sharing your story. Please do let us know how it goes in two weeks time. It sounds like all is well, although I know how difficult it is not to worry about it. My sons measurement was larger on one side than the other but Professor Nikolaides did not seem concerned.

One thing I still don't understand is what is mild VM? I know that sounds strange but do you know what the outcome/effect of this is? It's weird because for many of us on here it has been a case of boys with rather large heads, so can't that just be the way they are? I mean, before scans were used and this measurement taken it's entirely possible many people have a larger measurement on one side and are none the wiser? My baby's head is on the 98th percentile but he is also on the 91st percentile (or just above) for weight and height, so just a big boy. It sounds like your case is similar.

I am not sure this technology is a help or a curse. We have all been put through quite a bit and yet all seems 'normal' if that makes sense?

 

[Sweetk1]

My paediatrician said exactly that! We have no idea how many people are walking around with one vent larger than the other or large vents. If I had not had the scan at 33 weeks I would have been none the wiser.

Mild VM is a measurement between 10mm and 15mm anything over that is classed as severe. If it's progressive it turns into Hydrocephalus (water on the brain) and some babies require a shunt. I think it's important to rule out any other brain abnormalities.

There have been various studies on VM and some children have minor problems meeting milestones and intellectual problems but the studies are old and have not been followed up properly. Other studies say that when the enlargement is an isolated finding, and unilateral it's often just a benign thing.

They do say boys Vents are generally bigger than girls.
My sons weight and height are on the 95th centile too, his head was on the 98th but now around 91st. It's been that way since 20 weeks of pregnancy.

I worried so much for so long but I have cone to accept what will be will be, he's my son and I love him no matter what.
I am hopeful though as he seems great, I just hope it hasn't increased at all.

 

[janey1975]

Thanks for the reply Sweetk1. What you have said is very similar to what I had heard too. I really do think it's such a scary experience to go through. It really does sound like your boy is just big, like mine. Also, we are talking mm's. I am not convinced sometimes that all measurements are symmetrical. Prof Nicolaides put it well to me when he said that nobody is perfectly symmetrical and with no other issues found I should never have been worried.

In terms of my baby's development, he seems to be meeting all the milestones. I am super vigilant though (far too much) and panic if I think he is behind at all. I did (and sometimes still do) worry about his head control but the health visitor was not concerned and thought it was good. I just think because he has a big head it can wobble a little. I do hate the way I scrutinise his every move because of what happened and wish I could relax more. How are you about it all? I know your boy is a lot younger.

I am also from Essex too, another thing we have in common. I won't name my hospital but I don't have much faith that the original measurement that triggered the referral to King's was that reliable (she got 9, 9.5mm and 10mm but felt she needed to refer because of having one measurement of 10mm). The equipment at the hospital was really old, especially when you compare it to Kings and the Fetal Medicine Unit. It says it all when within 4 hours it went from 10mm (local hosp) to 8.7mm (Kings).

Anyway, enough of my moaning. I am sure his measurement will not have increased and nothing more will come of it. Good luck for two weeks time and do let us know x

 

[blkdiamond]

Oh thank goodness for this thread. I had a growth scan because I was measuring big and they found enlarged ventricle of 12.1 on the left and 10.3 on the right at 29 weeks. I also have a big baby (girl),she was measuring large on everything, with polyhydraminos thrown in too. Obviously I am distraught. I get rescanned in 2 weeks and told I may need fetal MRI scan. At least I feel a little hope now that things work out in most cases.

 

[Tulip]

Good luck to you mama I hope your little girl is fine

 

[janey1975]

Good luck to you blkdiamond. I know that these two weeks will seem to go really slow, so try to keep yourself busy and your mind off it (if at all possible). Sounds like you have a strong little girl. Please let us know how you get on. Lots of love to you x

 

[Sweetk1]

Blkdiamond- please google I am pregnant-ventriculomegaly.
It is a forum specifically for VM. Ignore the first couple of posts as some ladies were having a disagreement but if you go back through the pages (there are hundreds) you will read some really encouraging stories. Loads of mums with VM diagnosis. And you will fine 90% of them have perfectly fine babies

 

[blkdiamond]

Thank you so much for the support and info. I will keep you all updated with how things go.

 

[mare]

Oh thank goodness for this thread. I had a growth scan because I was measuring big and they found enlarged ventricle of 12.1 on the left and 10.3 on the right at 29 weeks. I also have a big baby (girl),she was measuring large on everything, with polyhydraminos thrown in too. Obviously I am distraught. I get rescanned in 2 weeks and told I may need fetal MRI scan. At least I feel a little hope now that things work out in most cases.

Hi Hun,
What would we have done without this thread!!!
I know its so hard to cope esp when you start to google I wasnt too bad until I googled it!
After speaking to many people and reading this thread I realised that enlarged ventricles was quite common!
The 2 week wait feels like a lifetime!!
Sending my hopes and prayers for your family and your baby girl to be safe and well x x x

 

[blkdiamond]

Had my follow up appointment today. Things were very much the same. The left ventricle was still 12mm and the right had gotten a little smaller and is now below 10mm. I have to go for a MRI scan next week and have weekly ultrasounds aswell.

 

[janey1975]

Had my follow up appointment today. Things were very much the same. The left ventricle was still 12mm and the right had gotten a little smaller and is now below 10mm. I have to go for a MRI scan next week and have weekly ultrasounds aswell.

Thanks for the update. It's great that the right is slightly smaller, now at the top end of tolerance. And remember the right ventricle is still only slightly higher than tolerance. I know how distressing this must be for you but if you can try to remember that things often work out fine.

I am not sure where you are based but if you want a second opinion on it then I cannot recommend Professor Nicolaides enough. He is based at the Fetal Medicine Unit at Harley Street and was the person who set up the World renowned centre at Kings in London. He is absolutely wonderful and even though you have to pay to get scanned he offers his consult for free (if you go on a Wednesday) and all profits go back into research. He is the best in the World and I have the biggest respect for the work he does. When I mentioned his name to a consultant at my local hospital you could see the admiration and respect in her eyes. Personally, I would have travelled all night and day to see him. Words cannot express my gratitude to him.

The unit's website is here:https://www.fetalmedicine.com/fmc/

Sorry, I really sound like I am being pushy here. I suppose I feel like he saved my son's life in a way (and my mental well-being), so I can't say enough positive things about him.

Best of luck for the MRI; I hope it all goes well. Please keep us up to date. I have been thinking of you and will continue to do so.

 

[Sweetk1]

Blkdiamond- that is good news as the vents appear stable. Anything is better than them increasing.
My son has his ultrasound on Monday, he will be 7 weeks old. I'm keeping my fingers crossed that if his hasn't reduced it has St least remained the same. He's doing well though, I'm slightly concerned about his weight gain but he's drinking 36 once per day which is good but I'm noticing he just seems to be getting longer and longer, he was about 65 cm today when I measured his length, I think all the nutrition is going into that!

 

[samjc1531c]

I am so glad i have found this forum, i had my 20 week scan last tuesday and the scan woman said im sorry but the ventricle is larger than it should be i will have to refer you to the fetal medical centre i was shocked i didnt get a picture or anything it was if she wrote my baby off there and then!
we went to the fetal medicine centre on friday after what i can only describe as one of the most harrowing times of my life (my other having cervical cancer when pregnany with my now 8 yr old son).
The consultant was wonderful who i saw she explained everything said i would know the sex which we wanted and would have as many pics as we wanted before we left her. The measurement was slightly lower at 10.4 mm on one and the other normal at 7mm. She said there is not a single thing physically wrong with any organs hands feet face etc and the cerebellum spaces etc are fine it is just the 1 ventricle. She said she is not overly concerned and that she will monitor it every 2 weeks but i could have the torque test and an MRI scan, i initially refused (dont know why) but then she exlained that this was more of a way to rule things out than find out as she does not feel its a worry.
The first scan person at local hospital said the head measured large and the specialist consultant said the head is a perfect measurment and hits the average size and we are having a boy!!!!!!!!! she went onto explain how common large ventricles are in boys. I am feeling a lot more focused than last week but can still feel worries creeping in building upto the next scan and MRI results , i read awful stories on net about terminations at 23 weeks in regards to enlarged ventricles and frightened myself to death!!
I am so thankful to janey1975 for putting me onto this thread it has really helped me not feel im alone and have gained so much comfort and reassurance from the stories.xxxxx

 

[Butterflylts]

I am so pleased to have found this thread and thank you to all of you who have posted on here as it has just made me feel so much better. It's seem like no one I know has ever heard I this before!

So I am almost 33 weeks pregnant with my second child ( a boy this time). When I went for my 20 week scan they measured both ventricles to be between 10 and 11 mm. They immediately took my blood for a TORCH scan which thankfully came back negative. I have since returned 3 times for scans at 22 weeks, 26 weeks and 32 weeks and each time they both measured between 9mm and 10mm. so they have reduced since my 20 week scan and hve sine remained the same. At each scan they have reassured me that because everything else looks normal, this is most likely a variant of normal, however, after my 32 week scan the sonographer called me and suggested I see professor nikolaides on Wednesday just to be sure I don't need to have a fetal MRI scan. I'm trying hard not to worry and keep my spirits up but it's has been hard and I am so pleased I finally have come across a place where others understand what this is all about!

 

[Butterflylts]

I am so sorry to hear you are g through this. I am 32 weeks pregnant and have been going through this since my 20 wk scan too. So, did you have an MRI? All this time they haven't offered Me one but I'm wondering why now. I go back to the fetal medical centre for an app with the professor there this week to see what he thinks. How long does an MRI take to get results? Did they do it there? anyway, I know how horrible it feels and how scary all of this is, but my boy's ventricles reduced slightly from my 20 wk scan, they are both between 9 and 10mm now, really with the maximum measurement looking at about 9.8 ( one was 10.5 at my 20wk scan).

 

[Butterflylts]

Had my follow up appointment today. Things were very much the same. The left ventricle was still 12mm and the right had gotten a little smaller and is now below 10mm. I have to go for a MRI scan next week and have weekly ultrasounds aswell.

Thanks for the update. It's great that the right is slightly smaller, now at the top end of tolerance. And remember the right ventricle is still only slightly higher than tolerance. I know how distressing this must be for you but if you can try to remember that things often work out fine.

I am not sure where you are based but if you want a second opinion on it then I cannot recommend Professor Nicolaides enough. He is based at the Fetal Medicine Unit at Harley Street and was the person who set up the World renowned centre at Kings in London. He is absolutely wonderful and even though you have to pay to get scanned he offers his consult for free (if you go on a Wednesday) and all profits go back into research. He is the best in the World and I have the biggest respect for the work he does. When I mentioned his name to a consultant at my local hospital you could see the admiration and respect in her eyes. Personally, I would have travelled all night and day to see him. Words cannot express my gratitude to him

Sorry, I really sound like I am being pushy here. I suppose I feel like he saved my son's life in a way (and my mental well-being), so I can't say enough positive things about him.

Best of luck for the MRI; I hope it all goes well. Please keep us up to date. I have been thinking of you and will continue to do so.

I am so pleased to read this about professor nikolaides. I am seeing him on Wednesday and I almost decided not to because I have had so many scans an each time I walk away just as confused as I walked in. I'm really praying he will look me in the eyes and say "your baby is fine". The ventricles bothe measure between 9mm and 10mm. One is around 9.2 and the other is about 9.6 on my last scan. TORCH neg but haven't had an MRI. I hope he can at last reassure me. Been an emotional roller pasted since my 20 wk scan x

 

[Tulip]

Welcome to both of you! I'm so pleased that measurements have reduced in both your boys - brilliant!

Sam, sounds to me like it is a 'variant' in your LO, I hope the results bring you relief

Butterfly, I'd go just to meet the Prof! He's an absolute legend by all accounts. I'm surprised they've referred you with the vents within the normal range but it'd be awesome to get the all-clear from the prof himself.

Please keep us updated xx

 

[Butterflylts]

Thanks for your response Tulip. I know, this was my concern. I have been going to the fetal medical centre throughout so maybe they just thought I might as well see him for a final check?. I did ask them if there was anything else of concern and she said no, it's just she wanted to double double check that I don't need an MRI... But of course it's tough because then you have the waiting/ nerves all over again. Anyway, it's nice to hear we'll be in safe hands and I'm really praying I'll finally get the "sign off"

 

[Butterflylts]

So I went to have a scan with professor nikolaides today at the fetal medical centre on harley st and at last was given the all clear! He didn't think an mmr was necessary and i finally feel like i can start enjoying my pregnancy again. I wish I had gone to see him at the beginning of all of this. To anyone going through this, I agree with Tulip and highly highly recommend going to see professor nikolaides. There's nothing worse than walking out of a scan confused and he certainly knows his stuff! Anyway, I am feeling very thankful that things are looking good and I wish anyone else who visits this forum all the best x

 

[Tulip]

Congratulations! So very happy for you - enjoy the rest of your pregnancy and mummyhood