Enlarged brain ventricle (ventriculomegaly) - Has anyone had this diagnosis?

[Hoping11]

Hi, baby has had a mildly enlarged right brain ventricle picked up at the 20 week scan. Has anyone experienced this? B

We're moving this thread over to our Antenatal Tests topic at the OP's request.

Hopefully some Mumsnetters will be along soon, Hoping11.

Sending good wishes

Hi my almost three year old son has vrntriculomegaly and an absent septum pellucidum. We found out at the 20 week scan and the whole pregnancy was very scary. He had bilateral vrntriculomegaly measuring 15mm. It took 4weeks to get a fetal medicine app and we had MRI, bloods and amnio done. We decided to continue with the pregnancy and his ventricles reduced to just over the upper limit for normal vents by 27 weeks. I took a high strength dha/fish oil supplement from as soon as we got the diagnosis. I don't know if it helped but it did not harm. There is an excellent support group on Facebook that we found very comforting and are still members of. You will be given lots if worst case scenarios as it is a rare condition. Our son has had completely normal development, he had no interventions at birth and he was discharged from neurology by the age of 1 due to bring advanced for his age. He is a happy healthy bright boy.

Thank you so much for sharing your story. It’s so good to hear that your Son is doing amazingly well! Is the group on Facebook called ‘Ventriculomegaly’? I’ve joined that and the positive stories are amazing to hear.

I’ve had an MRI and waiting on the results. TORCH test and Harmony test are all clear and we will decide on if an amnio feels right for us dependant on the MRI. At the moment, everything else on the level 2 sonogram, conducted by a consultant looked normal, but they put so much fear into me, discussing worst case outcomes and offering up termination. Due to covid my husband wasn’t in the scan, so I had to try and relay all the information to him.

It feels that we won’t truly know anything until our Son is here. The not knowing is just so hard. Thank you again for sharing your positive story

Oh, and I am also now taking a high strength DHA fish oil, so fingers crossed that does help. I wish I’d been taking it from the start!

Hi, my little boy has severe ventriculomegaly, a slim corpus collosum and cavum septum pellucidum. He was diagnosed at birth so we didn't have the fear of the unknown that comes with an antenatal diagnosis. My little boy is now 7 and his ventricles have been enlarged but stable for the last 2 years. Prior to that we had a lot of lumbar punctures and discussions about whether or not he needed a shunt. He has some learning and physical disabilities. He has just learnt to ride his bike without stabilisers and he can write his name with help.

Hi all. @Hoping11 just wondering how you are getting on? We also found out at the 20 week scan that our baby has unilateral enlarged ventricles and currently waiting on MRI results. The 20 week measurement was only ‘just above’ normal and, like you the rest of the ultrasound was all ‘normal’ but am still panicking about the possible eventualities. Would love to know how you’re getting on if you don’t mind me asking.

@Mommaplaysthebanjo I’m really pleased to tell you my little boy is now 8 weeks old with no issues at all and he’s bright and well. My MRI results showed the same as the scan, with slightly higher measurements but still mild. A follow up scan a couple of weeks later then showed it had resolved and it never returned. I have my fingers crossed for you that it also resolved, which does happen often. Good luck!

Hello. I missed this the first time around. My very bright 11 year old daughter had this at 20 weeks but was within normal ratios by 26 weeks. She basically has a normal but big head! Otherwise no issues. X

@Hoping11 thank you so much for your reply. That really does give me hope. Keeping everything crossed for our MRI not showing anything else xx

@Tigger85 hey, I know this post is quite old now, but I’ve just come across your story. We are going through something very similar and would love to see how you’re getting on? We had our 20 week scan and was told our girl had bilateral vente, in the moderate, but also couldn’t see the csp. We had a scan with fetal medicine yday and they confirmed measurement of 13.8 in right and left ventricle, also couldn’t confirm the csp, however she did she she has a gut feeling it was there, just couldn’t see it. I have an mri in a few weeks but I’m still so scared and anxious! I’d love to chat x

@Tigger85 hopefully I can give you some hope- my little boy is now 3.5 and is absolutely fine (as with posts above, he just seems to have a large head!). Despite regular scans picking up issues throughout pregnancy, by the time he was born via planned section, the issues had resolved themselves! Developmentally he seems fine xx

Hi, I was on the thread before and my son is now 11 and just leaving primary school. He has moderate learning disabilities. He is the happiest boy and is so excited about going to secondary school with his best friend who also has learning disabilities. He started off in mainstream and we thought he would be in specialist school by year 1 but he has been in mainstream all through primary school. Yesterday he did his leavers assembly with his friends and he will be going to mainstream secondary school in September.