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?"

@Molliejx It's a hellish decision to make. Having read a crazy amount of scientific papers my husband and I decided that we would terminate if her vents went over 18. They were 16 when we said that and at the scan the following week they had jumped again to 18/19. At this level as I'm sure you have been told there will be little brain function with cluster seizures, difficulty feeding etc. We just didn't want that for our little girl and it felt like the least cruel option for us rather than bring her into the world like that. But we kept just thinking one more week, one more week. Especially when I could feel her kicking around in there.
It's desperately hard and cruel, and I'm so sorry that you are having to make such an impossible decision. Over a year down the line I still feel like we made the right decision but it will haunt me forever

@iamloading
Yeah with one side being 16mm and the other 22mm, and with the loss of brain tissue, i feel like there's no coming back from that for her. It's just so cruel that this can happen. I bled every few weeks from 4-16w with going to do many scans and being so relieved when her heart was beating. Nothing else was picked up. And then 20w scan comes,no bleeding to worry about, we're excited to see our little girl, heart beating strong, and then the awful news which makes you feel so numb and knowing a tough road is ahead. I just feel so sorry for her and the thought we won't be bringing her home just devastates me so much. My OH doesn't get upset very often, twice in the last 9 years I've seen him cry and he is just beside himself and it really has shaken us. My one fear is that when they do the PM, that they'll find no issues. I know with the tissue missing then that can't repair itself but its a massive fear that it was all wrong.
I'm so happy for you to be able to have a healthy pregnancy afterwards and I'm praying this feeling isn't like this forever. Or little girl was wanted and loved from day one. Its just so horrible.

@Molliejx I had exactly the same fear about the post mortem. Also my husband was exactly the same, in fact it hit him hardest I think of the two of us. He still cries fairly frequently about it now. Going back to the post mortem fear, we could see the second I gave birth to Beth that something was badly wrong. Her head was just too large and was the shape of a football. In a strange way I was glad as it confirmed that we really had made the right decision. I knew we had, but it helped with the guilt to see it so clearly. We also spent time cuddling her which I wasn't sure if I wanted to before but now I'm so so pleased that I did.
How many weeks are you? If you are past 24 you are entitled to full maternity leave which I needed to heal. Thinking of you xx

@iamloading
The reports say that the body is at 6% and the head is 86%. So that's a massive difference in size. So I really do think it would be on the severe case of it for her and would be heartbreaking to watch her suffer if we were to continue the pregnancy, if she would even make it that far in not sure.
It really does hit the dads and he says its the right of my bringing her home and making memories and watching her grow up. It kills me seeing him this way.
Yeah its guilt that im scared of too. Like I'm grieving for her and she's still with us. And its the unknown and the fear of the post mortem.
Im 20w+3d today. I thought about waiting until 24w for registering purposes but i really don't feel like i can go through the next few weeks with the movements as its devastating to think of what's to come. I don't get sick pay with my job either in healthcare so ever having 2 weeks off is going to be a push for me.
Thank you so much, you've really eased my mind in that we're not alone xxx

@Molliejx gosh that's so hard for you. I ended up booking a holiday just to have something to focus on and a memory that wasn't connected to her. I agree if you are at that gestation. Past 24 weeks it is also much more of an intrusive process as they have to inject the baby to stop the heart which frankly makes a horrific situation even worse.
I'll be thinking of you and here if you have any questions or just to talk. It sounds like sadly like Beth you will be able to see her condition when she is born, which then for us were backed up by the PM. The guilt will be always with you, but you will know in your heart of hearts it was the right decision for you as a family. I'm so sorry xx

@iamloading
Yeah my partner wants to do something to kind of not be connected to her. To be due end of May, i don't want to be alone on her due date and feel I would need to do something you know.
Yeah my partner doesn't want to see me go through the process of terminating at 24w. It's very intrusive and I'm so sorry you had to go through that. And i think prolonging it, prolongs the grief and everything as well. So we have our appointment monday to discuss what would happen exactly in termination and if we want to start the process then. You just never think it's going to happen to you. Thank you for your words, you've honestly helped and I can't be more grateful xxx

The feticide (injection into the heart) is generally done after 20 weeks as if the baby is born alive, they have a duty if care to preserve life. Wishing you strength and love for tomorrow @molliejx xxx

@39Suzy
They've said that up to 21w6d, they do the tablets only and after that is when they do the injection so I'll double check that with them tomorrow.
Thank you so much xxx

Thinking of you @Molliejx

So sorry to those of you who have lost babies due to ventriculomegaly. My baby was diagnosed at birth with ventricles of 21 and 24mm, part of his corpus collosum missing and his brain was also too smooth for his gestation (the brain is meant to get more wrinkled as it matures). He is now 5 years old. He had a difficult first few years with a lot of operations and pain but he has been happy and stable for nearly a year now. He has some learning difficulties but he is thriving in mainstream school. I hope my positive story doesn't upset anyone. I know I am very lucky to have him.

@iamloading @39suzy
Thank you again for your support and advice over the last couple of weeks. I thought I'd update you on what's happened since everything.
After 33 hours of labour, on the 17th January 22:07, Erin Norah Steel was born sleeping. She looked so peaceful, every part of her so defined and perfect. Couldn't believe how we made such a beautiful baby. We held her, kissed her and said what we wanted to say but not being and to bring her home was horrible, we just can't describe the ache we have for her. Shes having a post mortem now over the next few weeks and we'll get the results in just over 2 months. We're going to plan her cremation ourselves as we had some info that we didn't like - they don't tell you when they cremate your baby with the hospital until its already done. Personally i find that disgusting. They're our babies yet we don't know even a day that its happening, not until it's already done. I was devastated hearing that. So now we are to arrange it ourselves which I am dreading but id do anything for my little girl.
In memory of Erin, we had her tiny footprints tattooed with her name and i can't stop looking at it, as well as looking at the photos we took of her.
Im having another week off work, but then going back on the 11th. I feel like i will never be ready for that but I know i need to go back at the same time.
Thank you again for your support and advice, hearing other stories helped me to process what was going on, im so grateful.
I attached a photo of our little girls footprints on my arm, where i can see them all the time ❤️

@molliejx
Lovely to hear from you.
Congratulations on your little girl,.what a beautiful name. I am sure she would be so proud of you both ❤

Leaving hospital clutching my memory box was the hardest thing i have ever done, i feel your pain.

Hope the PM gives you some answers and that Erin's funeral brings you peace and comfort. Xx

@Molliejx thank you so much for coming back and updating, I've been thinking about you. The little footprints are just lovely, we have a frame up with Beth's in our kitchen which I look at every day. Sending you huge hugs and I'll have everything crossed for your PM results. Ours took about 2 months. We also organised the funeral ourselves x

Hi all.

Not sure if this helps any of you but I posted a couple of years ago just days before my daughter was born and she was diagnosed with severe ventricularmegaly. We were told to consider termination as the measurements of 21mm and 22mm meant there would be a good chance she would be severely disabled and have no quality of life. I am now here with a beautiful and healthy 2 year old who is very advanced and proved everyone wrong! I also have a 4 month old little girl who is loved so much by her big sister! She was discharged from the hospital at 18 months old!

Just wanted to share a bit of a positive story with you all as we had a horrible experience when we found out about it and now we have a perfectly healthy and happy little girl!

@charlotteeexxx can you tell me more about your pregnancy? My DS was diagnosed with severe venticulomegaly at our 20 week scan with ventricles measuring 20mm and 21mm. Did yours get worse through the pregnancy or stay the same? Did the Drs recommend anything to you? Or just say wait it out?

Hey, everything was absolutley fine at my 20 week scan. The only reason I found out was because I went into hospital for reduced movements 2 days before giving birth and that's when they spotted it. They sent me straight up to LGI and did an amniocentesis and that's when they advised to terminate as the risks of her being poorly were so high. We actually thought about it for a second but because I was already at 40 weeks I decided against it. In the end from the MRI they said that she has a bleed on her brain which was blocking the fluid leading to the ventricles being enlarged. As soon as she was born she had another MRI and the ventricles had reduced and they just said it rectified itself.

I'm so sorry to hear that, I really do feel for you it's a horrible experience to go through! What did they advise you, the drs?

I really hope everything is okay x

Hi everyone i am 28 week pregnant and i just found out my baby has excess fluid in his brain the right ventricle is 18 mm which is classed as severe but the left side is fine. except this doctor said no other problems and I am waiting on my next scan..i can not do anything after this news i am so stressed out..any one with the same situation please give me some of your advice especially Sep2299

Hi,

I have been reading this thread and wondering if anyone could advise?

at my 20 week scan the left ventricle had 10.5mm of fluid so i was referred to a specialist and throughout all of my appointments with them it was less then the recommended 11mm. However at my discharge appointment, it had gone up to 12mm so i was sent for a fetal MRI. They mentioned down syndrome but said it was sytill a very small chance as all his other checks, brain activity, movement, heart was all 100% fine.

The MRI is now showing as 14mm on the left ventricle but the other side is completely normal and they are saying it should be fine.

Has anyone experienced this? where only one side is enlarged?

Thanks

Michelle

Im pregnant 29 weeks any my baby boy is missing corpus collosum and his left ventricle is 22mm and he is having a large cyst on his brain. I really dont know what can this all mean doctors are saying they are not sure about anything and there can be anyoutcome. Mild or severe.

Please can you tell more about your son situation. In in similar situation. Im pregnant 29 weeks and my son is having left venticules bigger 22mm and missing corpus collosum and plus for that i large cyst on the brain. I really dont know what will happen.

Iamloading,
I am hoping you are still checking this, and willing to share some of your knowledge. I am really struggling with some test results, and even though there's nothing I can do now, I am just...hoping I made the right choice. So here goes:
At 19 weeks, my baby boy had 14/17 Ventricles. 4 days later they were 17/18. We had massive, massive discussions, saw specialists, they all told me they'd be surprised if my amnio came back negative for x-linked L1cam hydrocephalus. They did confirm he had aqueductal stenosis on an MRI. By the time of MRI, ventricles were 18/19 and the 3rd ventricle was 5mm. We had to make a rash decision to terminate because in Ohio the law states we can only terminate up to 21 weeks & 5 days. So, we terminated(at termination, vents were 19/ 23). 3 weeks later, the rest of my amnio came back. My L1cam was NEGATIVE. Which I told them it would be because I have NO family history of it and it's a genetic causation! So here I am, bawling my eyes out because I'm wondering...did that mean there was a chance he would be ok? Im reading on here now, theres quite a few people that have severe VM and their babies are thriving. Is that because their babies didnt have aqueductal stenosis? Im just so...so distraught. Did I make the right choice?!? I was so inundated with specialists & tests that I couldnt hear what my gut was saying. Please tell me about the things you read that helped you with your decision. I keep finding stuff that contradicts. One says he could have been fine. The other says he would have been severely disabled. Please tell me you can help me!

@Skweex10 It really depends on the measurements and the gestation of the baby. 18/19mm vents x2 +5mm for a 20 week baby with a head size of only 40-50mm in total, means there will have been no space for any brain matter to grow. Our consultant told us this means there is a very poor prognosis indeed. In a full term baby, where this only happened at the last minute, there will have been space for the brain to grow and 20mm x2 vents would take up less of the overall space available in the skull. Either way, no one can know exactly what will happen, but regardless of whether the issue was genetic or not, the brain would have been very unlikely to recover from such a poor start. Hope this helps.

@MissingMargherita I cannot thank you enough for your response! You explained it much better than the doctors...they just kept saying they "knew from experience" that it was going to have a bad outcome. But I couldn't get them to tell me why...it was almost...like they were afraid to commit to what they were telling me! So thank you so much!!!

Hello,

I am pregnant with my first baby and up until now have had a great pregnancy but 3 days ago at my 20 week scan I was told my babies PVD Posterior Ventricle Diameter is 13.9mm when the upper limit is 10mm. The cerebellum is also only measuring 16mm which is too small from what I have read online however the sonographer didn't mention the cerebellum only the PVD but I have read it in my notes.

I’ve been referred to specialists in 4 days time for an MRI scan and perhaps amniocentesis.

I’m worried sick and so scared they will give me a poor prognosis and advise on termination as I cannot bear the thought of it

Any advice I would really appreciate as I feel so lost. Everything else was fine at my scan.

@Jodz891
I'm a little curious as to what measurement you are referring to. Doctors phrase things differently, so I am hoping you can give some clarification. Did they possibly say the 4th ventricle? Which if you look at a diagram, can possibly be considered posterior. Also, do you know the sex of the baby? However, while I am waiting for your answer, I will tell you that with my experience, there were 2 ventricles (lateral ventricles) that measured above the 10mm. my baby's vents measured differently...one bigger than the other, but both big. His cerebellum was also smaller than they'd like. While I am not a doctor, I can hopefully help you with some of your expectations.
In the next few scans, they are going to measure, measure measure. I did the MRI and the Amnio. My baby's ventricles kept getting bigger. YOUR baby can still grow and change. One thing I do know is if they didn't mention the cerebellum, then don't worry about it...for now. Cerebellums can "catch up" growth wise from what I have read, and my baby's cerebellum did catch up. Unfortunately, the ventricles kept getting worse. My baby had aqueductal stenosis. IF you are referring to your baby's 4th ventricle, just from the little I read, as long as there isn't pressure on the brain, things might still be ok. But, please just hold tight. Your baby is growing and changing every week. Although this is stressful, a LOT can happen between scans. I know this is hard. But you aren't at the decision making point yet. I did choose termination. I am here for any questions, or help I can give. keep your head up, and try to stay positive. Although that is tough to do, it is all that you can do. The body is an amazing thing, and can overcome so much! Please keep me posted!
~~Devin