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?"

[Sep2299]

We had the detailed ultrasound yesterday and they have picked up further complications as well as confirming the excess fluid on the brain and abnormal shape of the skull which is linked to some syndrome.

We are going ahead with the pregnancy but are unsure of what tests to undergo at the moment.

In a state of absolute shock...has anyone experienced anything similar?

Would really appreciate some advice/support.

[DorothyL]

We had the same at the 20 week scan. Over the second half of the pregnancy we had lots more scans and were eventually told our son had a skeletal dysplasia. He was born at term. He's had various issues but is now nine and doing well.

[Gizmo2206]

No advise or help. But wish you well for your pregnancy! X

[lefty82]

Hi sep2299, we are going through a similar thing. Had no complications until the 20 week scan last week that found enlarged ventricles of 18mm and 22mm. Everything else was fine with heart , spine and feutal movements etc. Had the 2nd scan today with a consultant with didn't really tell us much more, just to expect the worst because of the severe size of the ventricles. Blood tests have come back negative for infections and have decided not to to have the chromosome tests. Having an mri this week an meeting with neurosurgeon when get results. Hope things work out for you.

[twotimestwo]

My DD had ventriculomegaly, with measurements of 22 and 24mm at 21 weeks. We had a fetal MRI which confirmed this and showed delayed sulcation (folding) we had Torch analysis (clear), but refused any invasive tests. We were told she had a 95% chance of severe disability. She was born at 34 weeks (unrelated to ventriculomegaly) and after birth an MRI showed her ventricles to be 12 and 16mm. She is now 4 and has no disability or delay. Thinking of you both, it is an incredibly hard thing to go through.

[Dale123]

Hi sorry to hear you are going through this.we had bilateral Ventriculomegaly at 20 week scan also ...17mm each side. Worsened to 20mm following week. Amino and infection screen clear. Mri at 23 weeks showed still at 20mm, caused by a blockage ...aqueductal stenosis. Scan at 25 weeks showed no improvement plus midline of brain was now missing that normally separates the 2 sides of brain. Given poor prognosis high risk of disability by 4 consultants. Decided to terminate in the end though very tough decision. It's very hard as docs cannot give you a definite outcome for the child, so all you have is probabilities based on the test results. For us it was a very tough call...this was our 6th IVF so we have longed for a child for a long time and it has not been an easy journey. X

[Hopefullyhoping]

Ventriculomegaly was one of many abnormalities which it was suggested our baby girl may have. Our story was much more complicated and sadly did not have a happy outcome but we learned that scans are not an exact science and were often told one thing and then something completely different. Please feel free to message me if you would like to, I've learned a bit about scans and syndromes along the way and am happy to share

[Kelsey113]

Hi I'm 21 weeks pregnant with my second child and I have been told my son has got bilateral venticallmegally and now next week I'm going for a Fetal MRI on my 20 week scan his left was measuring at 13 mm an his right at 15.3 I don't know what to think or do has anyone been through this could the US be wrong will he live a normal life I jus don't know

[LadyMumble]

He Kelsey, I just stumbled upon your post while looking for information, I am in a similar situation to you, severe ventriculomegaly at 26 weeks. I've had an amnio and MRI, all came back ok which is reassuring, but still leaves unknown factors. Such a terrible time going through those tests though, I have no answers as to what either of us can expect going forward, but I am here to handhold. Good luck with your tests.

[Kelsey113]

Hi I have had my MRI jus waiting on the results glad everything has come back ok and hope everything goes smoothly from now but yeah it is daunting as I don't know what to expect bu fingers crossed everything is all good next week when I get my results but it's the waiting good luck with you and your bundle of joy

[LadyMumble]

Hoping for the best for you. I've been advised that the measurements can change throughout gestation, so with a bit of luck the fluid levels could reduce to within 'normal' range. If the fluid reading is an isolated risk factor then the odds are in our favour that there will be no adverse effects to baby. I am repeating these facts to myself regularly when I feel worried. You've probably been told the same but thought may be worth sharing. Hope results come through soon for you, waiting is hard.

[elliejjtiny]

My 3 year old was diagnosed with severe ventriculomegaly at birth which developed into mild hydrocephalus at 5 months. He also has global development delay and cleft lip/palate. Happy to answer any questions you have.

[LadyMumble]

Hi Ellie, thanks for joining us.

I have lots of consultant appointments coming up and have been told this week that baby may need to born early as fluid keeps rising. I'm quite worried now.

How were your results Kelsey?

[Clair1909]

Hi
I stumbled across this scouring the internet for answers as I'm 39 weeks today & have just found out that my baby has severe ventriculomegaly which was not present at any other scan. In fact right up until this week my pregnancy was about as low risk as it could have been. As far as anyone has seen/said there doesn't seem to be any other abnormalities but I am still waiting for blood test results to come back.
Can anyone advise on what sort of issues my child might face as the internet seems to have very limited information
Thank you

[elliejjtiny]

Hi clair

It's difficult to say how your baby will be affected. I'm in a Facebook group for parents of children with ventriculomegaly and they are all different. My son is at the severe end, vents of 21 and 23 mm (normal is less than 10).

[charlotteeexxx]

Hi,

Sorry I don't really have any advice but I am in a similar situation. I am due to give birth tomorrow and yesterday after a scan I found out my baby had fluid on her ventricles which measures 20mm on both sides.. we have been advised by doctors it is a severe case and she has a 50% chance of being severely disabled when she is born and she may not live longer than a few weeks. We have been told to prepare for the worst, I am absolutely terrified and don't know what to do and I am expecting to go into labour anytime now. Please if anyone has any advice or has been in a similar situation could you share your information? I am at such a loss with all this information so far on in my pregnancy, when I had the scan they said all her other organs and the rest of her brain has developed properly it's just the excess fluid on her brain which is the problem. Had an MRI yesterday which ruled out a bleed on her brain and a stroke in the womb, amniocentesis results due back tomorrow.

Any information would be greatly appreciated!

Thank you x

[JustAMommaOf2]

Hey ladies. I just found out yesterday at my 20 week anatomy scan ultrasound that my babies ventricles are dilated in the brain. They said they are 2cm so 20mm. I'm terrified and stumbled across this post. We don't get to meet with the specialist until Monday morning and I'm trying to stay positive but so far I've been unsuccessful. I don't know what to really think or expect at this point, just terrified.

[JustAMommaOf2]

I am currently going through the same situation and stumbled accross your post. Wondering how things turned or for your little one of you don't mind me asking

[twotimestwo]

Sorry you're going through this. I posted higher on the thread. My DD is now at school and you'd never know she had ventriculomegaly. The not knowing is so hard - are you going for an MRI?

[JustAMommaOf2]

Thank you so much! It's been the hardest experience ever so far, and looks like a long road ahead. So far they didn't find anything else from the ultrasound. We are waiting on the genetic and infection results from yesterday and we are scheduled tomorrow morning for an MRI. Scared but trying to stay hopeful.

[twotimestwo]

I hope the MRI went OK. When do you get the results? Stay hopefull, ventriculomegaly alone can have a good outcome. I remember being terrified looking at the black emptiness on the brain ultrasound, there seemed to be so little hope, but she really is 100% fine. Thinking of you.

[JustAMommaOf2]

MRI was pretty easy today he was cooperative and they were done in about 20-25 min. They said I should know the results in the next day or two. Hoping all went well and praying they don't find anything else! Thank you so much, waiting is just so hard.

[Sharice03]

My baby boys ventricles dialated even more in one week 10mm from 19mm to 29mm.i am absolutely terrified.

[JustAMommaOf2]

Sharice

I'm so sorry to hear that :( We had our ultrasound at 20 weeks and went back at 21 weeks to check my placenta location due to some bleeding. Our baby boys ventricles were still the same at that time but we haven't been back since. I'm terrified that they will have increased as well. We go Wednesday which will be 25 weeks 1 day. Have they found anything else wrong with your baby boy or is his isolated? I'm part of a group on Facebook and I have seen so many stories where babies ventricles have continued to increase even up to 50+ and are living happy lives! I read over these stories each day trying to keep hope!

[Sharice03]

I'm so sorry to hear about your baby boy. They did find that I had antibodies for the cmv virus, which I've never heard of before until recently when I started to do research. But the doc is saying it's unrelated. I think it is related. I did research and saw that there is a link to the two. Apparently there are two different types of cmv. One you can get while pregnant and the other you could contract and it stays in your body for years. I'm so scared. I just want my baby to be healthy. It's our first child. I want another one but I'm scared the next could have same issues too. I hope and pray our babies are ok 🙏