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Severe ventriculomegaly diagnosed at 20 weeks

(92 Posts)
Sep2299 Tue 17-Nov-15 05:43:47

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 Sat 12-Jan-19 16:49:12

Thank you for your reply. I have read your story and I am so sorry to hear you had all of that!
The specialist has said due to pressure, the midline of the brain tissue has gone and the outsides of the brain tissue is getting thin also.
I feel like terminating would be the best route to take as i would hate for our little girl to go through any suffering. Its just such a final decision and although you hope for your 9 months pregnancy to go fast, i just want it to slow down so we could see what could happen in the future for her. Its so heart breaking.

iamloading Sat 12-Jan-19 17:17:30

@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

Molliejx Sat 12-Jan-19 17:33:18

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.

iamloading Sat 12-Jan-19 18:11:39

@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

Molliejx Sat 12-Jan-19 18:58:54

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

iamloading Sat 12-Jan-19 19:28:42

@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

Molliejx Sat 12-Jan-19 19:40:50

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

39Suzy Sun 13-Jan-19 13:53:49

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

Molliejx Sun 13-Jan-19 16:45:39

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

iamloading Tue 15-Jan-19 16:41:09

Thinking of you @Molliejx

elliejjtiny Tue 22-Jan-19 19:37:46

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.

Molliejx Sat 02-Feb-19 11:07:11

@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 ❤️

39Suzy Sat 02-Feb-19 15:03:23

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

iamloading Sun 03-Feb-19 12:29:10

@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

charlotteeexxx Mon 28-Oct-19 16:08:02

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!

rjm4 Thu 07-Nov-19 03:34:11

@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?

charlotteeexxx Fri 08-Nov-19 11:09:55

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

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