Severe ventriculomegaly diagnosed at 20 weeks

[Sep2299]

I posted this yesterday (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?"

This is truly inspiring. I have been scowering the internet for weeks, just hoping to find a happy or success story and I have found it here. Thank you for sharing. I am in a similar situation going in for another ultrasound next week (week 30), i am really hoping my baby's ventricles begin to reduce as they are currently at about 16mm. I have been advised by several doctors to terminate, i, however, feel my baby will be okay. fingers crossed!

Hello,

Thank you everyone for sharing your stories. Had felt very lonely since getting the news of my babies VM. We have also been told of other abnormalities at previous scans. I hope everyone on here is doing well.
@NomD how are things going for you and your baby now?

Keeping my fingers crossed for everyone in this position.

Thank you for reaching out C, unfortunately we had to terminate at 31 weeks. Babys ventricles doubled in size and kept increasing by 31 weeks, along with other complications that arose. We just had to make an impossible decision. It was heartbreaking. Still is as we await the autopsy.

@NomD I am so sorry to hear this. You had to make the most impossible choice that it seems a lot of people here are faced with - you are not alone. I’m sure you have made the right decision and I hope you have enough support and find the peace you deserve.
Thank you for sharing and please continue you to reach out if you need to.

I appreciate this. I will surely reach out once we get the autopsy results back. Our case was an isolated one being that all the test results came back negative. We are hoping for some insight into the cause and risks for when we decide to have another baby.

Cheers.
ND.

Hi, I’m a little late. But my measurements are currently like yours. At 21 weeks it was 13mm. Then at 25 weeks it was at 22mm. I’m praying that they got the wrong measurements because my baby was so far down in my pelvis. I had a mri the day after the US and hope it all comes back normal. I had an amino done because I tested positive for a chromosome disorder but turns out it was a false positive, did every single test and came back negative. So I’m just praying my story is like yours. I can’t stop crying but my family is optimistic and saying if you feel in your gut your baby is ok then she’s ok. Mother instinct is better then any test. I’m glad we have the same gender because I did a lot of research and it says that ventriculomegaly is more common is boys. How is your baby doing today?

Hi @dajawilliams06. My little one was born with similar measurements to your baby and he is now 8 years old. He has had more than his fair share of medical problems but he is doing very well.

Can I just ask what the group is called?

Hi, I’m currently going through this and me and my partner have decided that the best option for us is termination, it’s certainly not been an easy choice but has anyone else done it before and can tell me what the procedure is? I’m so scared to do it but I’m doing what’s right for us and for our baby as he is getting worse by the day

Hi,

I’m in a very similar situation right now. My 20 week scan showed LV 17.8 mm and RV 19.3 mm. Exactly 4 weeks later, 24 weeks LV 20.9 RV 24.4 Third Ventricle is dilated as well. Fourth is normal. There is obviously more fluid in the brain than 4 weeks ago. The cisterna magna was difficult to assess due to hydrocephalus. The cavum septum was not clearly seen. Per providers report. I’m so afraid of what to expect. I’m meeting with the doctor that will be monitoring me for the rest of my pregnancy for the first time on Friday. I was requested to transfer my care due to the findings on my anatomy scan. Severe Ventriculomegaly and Valamentous Chord Insertion. I’ll be honest it seems that the 2 perinatologist that spoke to me after the ultrasounds have no hope. I can’t help but cry. I’m so afraid! My doctor will be referring me to meet with a pediatric neurosurgeon so they counsel me on what to expect when baby is here.. as of right now I keep hearing baby will most likely need a shunt (surgery) soon after being born. Will need to discuss long term prognosis.. hospitalization time. Etc..