Moderate / severe ventriculomegaly

(6 Posts)
DrP2000 Fri 22-May-15 15:50:48

Hello all,
I was hoping to share our story and see if anyone else has had a similar issue.
12 week scan was fine, but at 20 week scan (at 21 weeks) the ventricles in the brain were measured at 16mm - severe ventriculomegaly (VM).
We had a more detailed scene with the consultant the next day - the measurements were brought down to 14-15mm - moderate VM.
We were put through for a MRI the following week (22 weeks). This confirmed the VM and put it back at severe, but all other developmental factors appear normal (the silver lining).
We also had amniocentesis and blood tests - so no obvious chromosomal defects, no viral cause, no bleed on the brain. The cause could be a smaller chromosomal error (awaiting genetic assay results), single gene error (not possible to check until after birth) or it could be idiopathic - never to be discovered / known.
We are going in for a full discussion next week, with another scan. But so much is unclear and is based on probability; hard to work with when emotion is so powerful.
So if anyone has any experience please share, support is going to be very important over the next few weeks / months.
Thanks

KittyandTeal Fri 22-May-15 16:11:49

Hi

I don't have experience of this specifically. They considered it as an option for my dd2 but found more soft markers which turned out to be T18. We were told we would have all the same tests you had if it wasn't chromosomal.

Has the consultant been able to give you a vague idea of the implications?

I hope someone will be along soon. I'm sorry you're going through this, I know how horrid the testing, scans and waiting is.

twotimestwo Fri 22-May-15 19:02:12

My daughter was also diagnosed with severe ventriculomegaly 22mm at 24 weeks. The MRI also showed delayed sulcation (folding). She is now nearly 4 and is completely normal, which is an outcome that we were not expecting. Her ventricles did decrease post 30 weeks and we're 16mm by MRI after birth (34weeks). Take care, I'm sorry that you are going through this.

abram12 Thu 28-May-15 01:56:24

Hi

I am sorry to hear you have been going through this. Our baby was diagnosed with mild ventriculomegaly at 27 weeks and thankfully this had resolved by the end of the pregnancy and birth when the measurements had returned to 'normal'. So I know that isn't helpful but I wondered if you had come across this forum where there are many more stories of moderate to severe VM?

www.i-am-pregnant.com/encyclopedia/Babies/Ventriculomegaly

Wishing you all the best. X

elliejjtiny Sat 15-Aug-15 11:46:23

My story is slightly different but my DS4 was diagnosed with ventriculomegaly when he was born and then hydrocephalus when he was 6 months old. He is now 2y 2m and has development delay. He is cruising everywhere, says a few words and is a very happy little boy, although with all the general anaesthetics he's had he is scared of people wearing scrubs, bless him. He has had 3 MRI's and 5 lumbar punctures to monitor his fluid.

Geelood Sat 12-Sep-15 21:11:39

Hi there

Sorry to hear about your diagnosis but I had the same scenario. At the 27/28 week scan we were told our baby had mild ventriculomegy we had to return for another scan from a more senior member of staff who confirmed it was above the average. I was out of my mind with worry and google is the worst thing to do. But thankfully our baby was born perfect he was scanned after birth and readings were normal. I know it's hard but try not to worry sometimes all this information is not that useful!

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