Borderline bilateral ventriculomegaly at 22w - support thread!

[Tulip]

This is now a support thread for those who have received an initial diagnosis of borderline ventriculomegaly at their anomaly scan.
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Hello lovelies.

My little active man is doing so well but yesterdays scan showed the ventricles in his brain slightly enlarged (0.1mm about the normal range).

It's not a lot and may well resolve itself over the next couple of months, but after losing his big sister to a poorly head, naturally I am pooping my pants. We have a consultant appointment next Thursday, so Google and BnB will have to suffice in the meantime

On the up side his growth seems fine, he's VERY active and he responds to the sonographer's touch (turning over when commanded ) so neurologically he seems fine at the moment. I think we just have to hope it doesn't grow. I guess that means we get to see him more often anyway! We've not yet seen any soft markers for Downs, and his hands are open which seems to rule out Edwards Syndrome. Though I anticipate yet another (our third!) anomaly scan to check these things closely.

Anyone had any experience with this? Am trying to stay calm and carry on planning for his arrival....

 

[Drazic<3]

Hey hun,

I am so sorry you are being put through this, it's no wonder you are scared. Chances are, it will resolve itself and it will be one of those things you would never even have known about if it wasn't for the extra scanning. 0.1 is very little, and could even be some kind of blur on the scan! All other signs seem fantastic - and don't forget they are more likely to be enlarged without problems in boys.

Sending love

 

[Tulip]

OK I think three things are key today:

1. Does the initial measurement of 10.1mm appear to have been correct?
2. Has the measurement changed since Friday?
3. Can you find any other abnormalities which have so far not been picked up?

And also: does the cerebellum look normal? Can you see the corpus callosum? Will we be sent for a TORCH screening?
Up to this stage we have seen NO markers for Downs - nasal bone is present and good. Nuchal Translucency was normal at 12w, nuchal fold in normal range at 22w. His movement is free and his hands are unclenched, suggesting no Edwards Syndrome. Fetal growth, amniotic fluid and cord are normal. His head, face, spine, neck and skin, chest, four-chamber view and great vessels, abdominal wall, gastro-intestinal tract, kidneys and bladder, extremities and skeleton all appear normal. It's just his brain missing from that list.

We will be requesting that they change his EDD to that which he measured at his 12w scan (since we had our 12w scan hospital policy has changed and they now amend EDD based on those measurements). I know that I ovulated four, probably five days late, and at 12w he was measuring three days behind my LMP (indicating implantation at 5 dpo like his big sister - maybe I have short tubes ). I want his EDD changed because he is showing small on all the charts apart from his head and I want to have a better idea of how he's doing. Granted, it'll push his head measurement up, but by my calcs not excessively. From what I've seen all his other measurements are bang on.

If no other abnormalities nor an increase in ventricular size are found then I will be inclined to relax a little. If not.... the worry ramps up.

 

[Megg33k]

Stalking for your update this afternoon! Text me! Please?

 

[Tulip]

UPDATE:
OK so we went back on Friday.

The same lady that scanned us last week did another full anomaly scan and straight away we could see that the vents were measuring smaller (9mm max).

Consultant came in and also did full scan. The biggest measurement she could get was 8.6 and this was at the worst angle possible (baby is a real little wriggler - breech, cephalic and transverse positioning withing the space of 5 minutes). She was explaining to the sonographer that the vent you're measuring should be on the bottom of the screen (furthest from the probe I think) in order to get an accurate measurement due to the angle. I clearly remember her measuring BOTH vents from the same screen shot last week and think this is where it went wrong.

I also drank less on the day of the scan to see if that made any difference, but I think the major reason for our borderline measurement was operator error.

After losing Ruby to a poorly head, and having this hang over us for a week, having someone say "Your baby appears to be completely normal" is the most amazing feeling. For the first time in six months I can relax He has, after all, had four anomaly scans!

Hope this helps someone in the future x

 

[babybel]

HI hun,
So glad to hear its good news I see your in Kent, not far from me, can I ask where you had your scan?

xx

 

[Tulip]

Thanks hon! We are at Medway Maritime. I didn't have high hopes but they have been absolutely fantastic and looked after us fabulously - there must be a flag on the system saying 'treat with compassion' because as soon as they pull up my record they are very thoughtful x

 

[Emmylou27]

After losing Ruby to a poorly head, and having this hang over us for a week, having someone say "Your baby appears to be completely normal" is the most amazing feeling. For the first time in six months I can relax He has, after all, had four anomaly scans!

This is fabulous news hon. Have been following your story with interest - despite folic acid being taken our first has undetected spina bifida and hydrocephalus so I can kind of sympathise with what you've been through and am so, so pleased for you that everything looks ok.

To be told everything looks normal is a huge weight off your mind isn't it? I would say with four detailed scans, it looks like everything is

Hope all goes well for you xx

 

[Tulip]

Thanks Emmy - maaaaan, Daisy is gorgeous! Xx

 

[butterfly71]

Hi Tulip,
I found this thread while googling ventriculomegaly, I hope you don'tmind if I ask you a few questions.
I've just been going through a similar thing with my baby - at the 19 week scan they found enlarged ventricles, just over 10 for one and just over 11 for the other. But when they were measuring (my baby is a wriggler as well!) they actually ranged from 9 - 11mm. One week later as I was being prepped for an amnio they measured again and they had gone down to 7.6 and 8.3mm. Couldn't believe it!
It seems like an unusual thing for them to go back down to normal so quickly and so I was really interested to read your case. We have still been warned of a risk of chromosomal error just becuase it was above 10mm at any point so are contemplating having an amnio at around 27 weeks. (I'm 24 weeks now)
How long between scans did your baby's ventricles change size?
Did you have an amnio?
Even though our baby looks like yours (everything else measuring and behaving perfectly, all views of the brain showing normal structures, TORCH neg etc) they are still saying that because of that one bad ultrasound it increases a risk of trisomy by 9. I would be really interested if you had been told the same thing, or they just said now that its normal you can relax!
Thanks,
Andrea

 

[Tulip]

Hey Andrea, I'm sorry you're having to go through this worry

They have told us to go home and enjoy him abs that he seems normal. The combined scan at 12w gave us 1:22000 and 1:12000 risk of trisomy 18 and 21 respectively and is has not been mentioned at all in respect of the ventriculomegaly.

The measurements were taken exactly a week apart and we were not offered an amnio. In fact, the initial measurements were so borderline that the sonographer did not order a TORCH screen, so she was obviously unsure of her results. It seems perfectly plausible for your little ones vents to have reduced to that extent, having read the longest thread ever on another forum (you've probably found it on your Google journey). Trying to measure something so small on a little wriggler is also v tricky and if the angle of the slice-through on the u/s isn't exactly right the vents WILL appear bigger. I do think there was an element of operator error with us as she was measuring both vents from the same image the one being measured must be at the bottom of the shot (furthest from the probe) according to the consultant who signed us off

I'm sure all is fine - please, please let us know how you get on xx

 

[butterfly71]

Thanks for answering, I didn't get an email update so I didn't know until I checked today.

You had great results for your NT scan, mine are much lower (1:1800) but I am 39 so I guess that is why!

I have wondered about measuring error as well although they had 4 different doctors look at the scan pics so I don't know.

Pretty interesting that you didn't get a TORCH screen, it seems like they really weren't too worried about it for you - which is great! I wish they had been more relaxed with us it has really caused a great deal of stress.

I'll keep an eye out for your updates as well, you are only 3 weeks ahead of me so we'll be having both our maybe/slightly ventricularly enlarged (at one point!) babies around the same time.
Best wishes to you.
Andrea

 

[Tulip]

It is a shame the docs can get so over excited, sometimes they don't realise exactly how much it will affect us. Good luck to you and keep in touch. If it's any consolation we had a 4D scan yesterday (pics in my journal) and Little Munch looks perfectly normal and very, very happy. xx

 

[Tulip]

I just stumbled across my old thread and thought I should post an outcome. They didnt scan us again after 23 weeks and Munchkin arrived safely six days late. Here he is at six months and he is such a clever boy
https://i1134.photobucket.com/albums/m602/tulip1uk/th_e2fa54df.jpg
I know Ventriculomegaly can have terrible outcomes but it does seem there are a lot of scares and mismeasurements around. I hope these stories can reassure people while they're being referred xx

 

[janey1975]

Thanks for the update and so glad your little boy is doing so well. He looks absolutely gorgeous by the way.

I also want to reassure anybody that searches to get info on this. Our little boy (apparently it is much more common in boys as they have larger heads and more fluid than girls normally) was measuring 10mm at the 20 wk scan. She did 3 measurements and got 9, 9.5 and 10mm but because of the 10mm we got referred to the Fetal Medicine specialists at Kings that day. I was so upset thinking the baby had a problem with his brain. However, when we got to Kings the highest they could get was 8.9mm but they took blood for TORCH screening and said to come back in at 28 weeks and if it had progressed a fetal MRI would be needed. They did stress, however, that there was a very big likelihood it would be a variant of normal.

I was still really worried and 8 weeks seemed like a lifetime so I decided to book to have a scan privately with consult with Professor Nicolaides in Harley Street at the Fetal Medicine Unit. I was about 24 weeks then. We were scanned there and the measurement was recorded as 7.9mm. Like before, they looked at everything else including conducting a heart doppler scan and all was normal. The wonderful Professor came in and was so very reassuring. He said it was assymetrical (his right ventricle measurement larger than the left) but both are within the normal range (i.e., below 10mm). He said we did not need to worry and we should not have been worrying. He is amazing and I would recommend anyone who is worried to see him, he was the person who came up with the Nuchal scan amongst other wonderful things. Also, any profits from there go to the Foundation that conducts important fetal research. I immediately relaxed and started to enjoy my pregnancy.

We did still go to Kings at 28 weeks as the Prof said we might as well. The scan there found the measurement to be 7.5mm and the TORCH screen test came back negative. We were then 'signed off'. What a relief.

I think so much of this was down to the local hospital measuring incorrectly and being over-cautious. She even said at the time that had she got the 9 and 9.5mm she would not have referred. Also, she did say he was wriggling all over the place and made it hard for her to measure.

I hope anyone else going through this finds this tale reassuring. Please do not google or read too much as it will scare you (it did me!) If all the other aspects of the scan are good then it is likely to be okay.

 

[Fuchsia1412]

Tulip you're at Medway Maritime...??that's not the same as medway marina though is it..? We've just been to see a massive vessel at port Medway marina as my Dad decided he wanted to live on a boat...

 

[Tulip]

Tulip you're at Medway Maritime...??that's not the same as medway marina though is it..? We've just been to see a massive vessel at port Medway marina as my Dad decided he wanted to live on a boat...

Haha I live not far from the Marina Some of the boats down there are COOL AS!

 

[mare]

Thanks for the update and so glad your little boy is doing so well. He looks absolutely gorgeous by the way.

I also want to reassure anybody that searches to get info on this. Our little boy (apparently it is much more common in boys as they have larger heads and more fluid than girls normally) was measuring 10mm at the 20 wk scan. She did 3 measurements and got 9, 9.5 and 10mm but because of the 10mm we got referred to the Fetal Medicine specialists at Kings that day. I was so upset thinking the baby had a problem with his brain. However, when we got to Kings the highest they could get was 8.9mm but they took blood for TORCH screening and said to come back in at 28 weeks and if it had progressed a fetal MRI would be needed. They did stress, however, that there was a very big likelihood it would be a variant of normal.

I was still really worried and 8 weeks seemed like a lifetime so I decided to book to have a scan privately with consult with Professor Nicolaides in Harley Street at the Fetal Medicine Unit. I was about 24 weeks then. We were scanned there and the measurement was recorded as 7.9mm. Like before, they looked at everything else including conducting a heart doppler scan and all was normal. The wonderful Professor came in and was so very reassuring. He said it was assymetrical (his right ventricle measurement larger than the left) but both are within the normal range (i.e., below 10mm). He said we did not need to worry and we should not have been worrying. He is amazing and I would recommend anyone who is worried to see him, he was the person who came up with the Nuchal scan amongst other wonderful things. Also, any profits from there go to the Foundation that conducts important fetal research. I immediately relaxed and started to enjoy my pregnancy.

We did still go to Kings at 28 weeks as the Prof said we might as well. The scan there found the measurement to be 7.5mm and the TORCH screen test came back negative. We were then 'signed off'. What a relief.

I think so much of this was down to the local hospital measuring incorrectly and being over-cautious. She even said at the time that had she got the 9 and 9.5mm she would not have referred. Also, she did say he was wriggling all over the place and made it hard for her to measure.

I hope anyone else going through this finds this tale reassuring. Please do not google or read too much as it will scare you (it did me!) If all the other aspects of the scan are good then it is likely to be okay.

Thank god I came across these threads, Im not worrying as much anymore
My baby has a 10.2mm measurement

 

[Tulip]

Glad we can help Mare Are you being rescanned soon? x

 

[mare]

Yes I have a scan on 12th Jan (seems so long to wait though)