Bilateral ventriculomegaly

[cmstrid]

Looking for similar stories. On 4/27/23 we went for the 20 week anatomy scan. They said baby girl had moderate hydrocephalus, pericardial effusion, and echogenic bowel. I was a wreck to say the least. 9 days later on 5/5/23 we go for an ultrasound at the MFM and there is nothing wrong with her, the only thing they wanted to recheck was her left lateral ventricle, it was measuring 8-9mm (less than 10mm is normal) We go in for the follow up yesterday 6/9/23 and her left ventricle was 13-14mm and the right went up to 15.9mm. Can ventriculomegaly fluctuate like this? Has anyone been on this rollercoaster and had a good outcome? I’m having such a hard time emotionally with all of these ups and downs.

Hi OP, I'm so sorry for the stress you're dealing with currently.
My son was found to have ventriculomegaly, however it wasn't present at the 20 week scan and instead was found at a private scan at 27 weeks.
His started 14.4mm and unfortunately continued to rise (because of his position they could only accurately measure one side).
Ventricle sizes can fluctuate for varying reasons. I would suggest joining the Facebook ventriculomegaly group. I found it a complete lifeline when we were going through that experience. There are parents all around the world sharing their stories, and I was shocked to see babies with vents 50-60mm living great lives.
I hope you find some reassurance soon xx

Thank you, how did you and your son make out?

Unfortunately my little boy had a lot of other issues going on with his brain, the ventriculomegaly was the smallest issue. He'd been having strokes and was sadly completely brain damaged. We chose to end the pregnancy due to the extremely poor prognosis he was given, and he was born sleeping at 33 weeks.
However, my son's case was extremely rare, so please don't let that scare you. As I said before, the majority of ventriculomegaly causes no issues. In my second pregnancy (healthy baby), her ventricles were measuring large at one scan and then resolved by the time we were scanned again. She's now 10 months and thriving.
Wishing you lots of luck

@cmstrid apologies to join this thread so late in the day, however I have just had a similar diagnosis at a 33 week growth scan (right ventricle measuring 15mm) and wanted to see how you got on and what the outcome was for you and your littler girl? Thanks

@sl7uk She is absolutely perfect. She was born at 40 weeks, her ventricles measured 10mm exactly after she was born they did a few follow up ultrasounds to make sure everything was still okay and she was discharged from neurology at 4 months. She is 7 months now and meeting all milestones. You’d never be able to tell all the scary things I was told and ruined my pregnancy. You got this.♥️ I heard this a million times and it was so true that pregnancy is the hardest/ scariest part.

@cmstrid thank you so much for your quick reply, it’s so so nice to hear a positive story because everything else you read is very doom and gloom!

Did you have a MRI or amniocentesis? I’ve read those can be next steps for a diagnosis if there is an abnormality, although all blood tests and scans so far have been all clear on that front, so it‘s very confusing!

@sl7uk no I did not, it wouldn’t have changed anything for me and I mentally couldn’t deal with bad news so I declined both. I would do whatever helps you feel better. It was such a dark time for me. Compared to others 15mm is really not that bad, I know it’s classed as severe but my daughters were up and down from 20 weeks until she was born. I’ve also noticed if there is no 3rd or 4th ventricle dilation that the outcomes are great.