21 week scan - "unilateral borderline ventriculomegaly"

[Naomijay]

Hi everyone,

I had my 21 week scan yesterday and instead of leaving excited and happy I am now very worried. After what felt like an extremely long scan, the sonographer stated that I should not worry but the is 'borderline' measurent in the baby's ventricle at 10mm - called unilateral borderline ventriculomegaly.
I had to then wait around an hour to see a consultant who repeated this. She stated there are no other abnormalities and that in these cases it is the presence of further abnormalities that are a cause for concern, suggesting chromosomal abnormalities like Down's syndrome, however I should come back in two weeks for a further scan.

My nunchal scan at 12 weeks was completely fine and up until now I have been constantly reminded that I am young (27) healthy and have a low risk pregnancy.

I became very upset and she then tried to reassure me by saying that if it was her pregnancy she would not be worried.

Despite this I'm terrified and I'm struggling to speak to others or feel any enjoyment in my pregnancy - even my baby's movements.

Does anyone have any experience or knowledge of this? I would be really grateful for some insight.

Xxx

[KittyandTeal]

I'm so sorry you're going through this.

I have no experience of that specific abnormality.

However, in my experience docs will tell you straight. They're not in the job of trying to reassure you unnecessarily, they will tell you everything that is wrong to give you choices.

I would put my money on other abnormalities being picked up if there was something seriously wrong with your baby.

When we found out our dd2 had Edwards it was a combination of bloods from the 12 week combined test with 4/5 soft markers on her anomoly scan.

If your baby had a trisomy for example I would be astonished if this was the only marker.

I know it's is awfully worrying, especially as you have another scan booked to find out.

In the mean time can you write down questions to ask as you think of them? Do you have the contact number of the screening midwife at the hospital, they may be able to help. If you want someone to talk to arc run a helpline and the ladies on it are wonderful.

[Naomijay]

Thank you KittyandTeal,

It's extremely kind of you to offer support.

Xx

[ASAS]

Naomi, I was also 27 and told our baby had ventriculomegaly at the 20 week scan. I'll say now he's fine. Below is my experience if you want to know.

1. Our measurements were monitored throughout and ranged from 10-11mm. I would obsess about the decimal point as we were told anything under 12 is borderline and over 12 is abnormal, but even then between 12-15 can be compatible with life.
   

1. We had no other soft markers. I specifically asked for my baby's spine, nose and hands to be checked.
   

1. We had a fetal MRI, not sure if this is an option available to you, but it's a different technology to ultrasound and reassured us (sort of) of no other markers.
   

1. I found there was very little information available online but there was an article by Leeds Teaching Hospital that I found useful.
   

1. I didn't have the amnio, but was offered it.
   

1. The worry was a living hell. But we got to wake up out of our nightmare and you could too.
   

I'm sorry I can't offer anything less practical, but I hated receiving people's best wishes when I was going through this.

Are you going back for a follow-up?

[ASAS]

Sorry about your daughter Kitty

[ASAS]

Kitty, if you don't mind me saying, I agree that with only 1 marker trisomy is less likely and from what I understand ventriculomegaly has no known cause at the minute. Our son is a case in research as he's fine. A lot of information on outcome relates to a higher dilation in utero.

[Naomijay]

Dear ASAS,

Thank you so much for that, it was something factual that I really needed to hear.
I'm sorry that you had to go through it also and I'm glad everything was fine in the end.

Thanks again for sharing.

Xxx

[KittyandTeal]

ASAS yes, you obviously know a lot more. Your post looks very helpful.

I think when people have abnormalities picked up quite often the mind skips to trisomies as they are a little bit more known about and also often incompatible with life (2 of the 3 majors ones are and a fair few T21 are too)

I think I've picked up a fair bit of knowledge about trisomies through my journey and I hope that sometimes I can help reduce people's stress levels a little.

Sometimes I feel it's the only positive to come from my daughters death.

[ASAS]

This particular board was my first foray into the wonderful world of mn, I'll never forget the people who responded to me back then. It's very isolating and this was somewhere I didn't feel isolated. It's awful for all of us though.

[MrsStarwars]

Hi Naomi, I had a similar experience to ASAS.
My twins were diagnosed with ventriculomegaly at the 20 week scan.
We had many extra scans throughout the pregnancy and the measurements were between 12-13mm at most. We had a fetal mri which ruled out any other problems at about 23 weeks.
I also declined an amnio.
It was an awful time of worrying about the possible outcome of the pregnancy as we were often told the worst case scenario by the Dr's.
To cut a long story short, the boys were born healthy by elcs at 37.5 weeks. Paediatricians checked them over at birth, 1 day old and 6 weeks old and found the ventricles at normal measurements.
Both children are happy, healthy 6 year olds now. I remember the worry you will be going through, please get them to keep checking your baby regularly and I wish you all the best.

[alessandraC]

Hi Naomijay
I had my 20weeks scan last wednesday and the outcome was exactly the same as yours.
Needless to say the sleepless nights and the tears since then. Reading other parents experiences has helped a lot to calm us down as the majority of the stories has happy endings (thanks for sharing!). We have a specialist appointment next wednesday and we hope the situation will have improved by then.
Wish you the best luck and fingers crossed for both of us

Alessandra

[AnxiousKeziah]

Hi I also agree that of you had a low risk rating at 12 weeks to listen to the dr's - the fact you are getting another scan in 2 weeks time is great care.
Our story ended in a stillbiirth - we had a 1:40 risk at 12 weeks, one definite soft marker at 20 week scan and other "issues" and were left 8 weeks between scans. So we had no choice of termination even if we had wanted it or so on. You have been reassured, are getting another scan and still have time to make further choices about Amnio tests if you feel it will help you. Also can get specialist referrals for more scans if needed to after next one, etc.
All the best.

[Naomijay]

Hi everyone,

Just an update that at my recent scan just over a week ago, they stated that everything now measures as a normal variant. Thanks for your support.

How are you getting on?

[alessandraC]

Hi Naomi
we had two scans since then and everything now measures as normal. We have a scan in three weeks time and we hope it'll stay the same.
I'm really glad the outcome was positive for you as well. I'm still a bit upset we had to go through all that scary time.

xA

[Feyz2012]

Hi everyone,

I had my 21 weeks scan last Tuesday and I had the same experience with naomi and alessandra. My next scan will be next week. I am so worried that the number(10 mm) will go up in the following weeks. Can you please share your experience after following weeks?

[alessandraC]

Hi Feyz
my baby is now here with me, two months old, beautiful and extremely smart. My understanding is that in the 99% of the cases the situation resolves by itself. I'm sorry you are going through the same, I know what it means, but if I were you I would just relax and stay positive! :)x

[Almu12]

Hi Alessandra,

Ohh I am so happy for you and your baby. Thank you very much. I really needed to hear this. Hope my baby will be so healthy as well.

[Naomijay]

Hi feyz,

My son is now 9 weeks and is perfectly healthy!

It was a really worrying time initially and this was one of many things that they queried. If they look hard enough in scans they can find anything to potentially worry about.

I'm sure everything will be fine for you also. Hope you're ok and can try and take your mind off of it.

Xx

[Almu12]

Hi everyone,

Thank you very much Naomi. I am so sorry that they queried many things as well but they are all gone and you and your baby healthy and happy at the end:)
Just for update, I had my 22 weeks scan yesterday in fetal medicine department and everything look normal now, thankfully. They said the baby is perfect and nothing to be worried (the one 10 mm dropped to 8.7 mm). Hope it does not go up again because not further scan until 36 weeks. I will try to not to worry the rest of my pregnancy. Thank you both to share your experience with me.

[Almu12]

Feyz

[Sep2299]

I posted this (copied and pasted below) in the main pregnancy board and was advised to try posting here...has anyone been through something similar to my situation?

"This is where there is excess fluid on the baby's brain, which is usually only picked up at the 20 week scan, not the 12 week scan.

The left ventricule is 7mm which is normal (should be 10mm or under) however the right ventricule is 19mm which is classed as severe.

Waiting for a more in depth/detailed ultrasound with a specialist to see if there are any other abnormalities, however nothing else was picked up on the 20 week scan apart from this excess fluid on the brain and the shape of the head.

Can't help fearing the worst...but hoping there are some positive stories out there?"

[Molliejx]

I've had my 20w and found my little girl has severe Ventriculomegaly. Been told maximum fluid in brain should be 15mm. One side is 16.5 and the other is 22.5. The middle of the brain tissue has also gone due to pressure from the fluid, so the brain is not separated into two anymore and the outside of the brain tissue is very thin. We've been advised to terminate but its easier said than done!
Still in such shock and devastation to why this is happening to my baby girl. Please can someone give their experience?
Anything would be appreciated right now!