Borderline bilateral ventriculomegaly at 22w - support thread!

[janey1975]

Up to Newcastle tomorrow hopefully i have the scan and MRI, so i dont have to travel up there again. Fingers crossed the fluid has not increased anymore :-/

Best of luck Phoebe - I hope the vents don't show any increase. I will be thinking of you tomorrow. Deep breaths and positive thoughts when that probe thing hits your belly. I know how nerve-wracking it can be. Also, make sure you remember or write down what you want to ask even if it is good news because you want to come away properly reassured.

Best of luck and lots of love to you and bubba x

 

[janey1975]

How did it go Phoebe? I was thinking of you yesterday x

 

[bekk63]

Hi all! I came across this thread today while googling like crazy about my twin boys! YES twin boys. Had the morphology scan and one baby is amazingly fine The other 'twin A' the active non stop moving one was measured to have 10.1mm. im 22 weeks and found out today about the 10.1mm measurement. Ive always been concerned about twin b as he never moves, ever! Hubby coudlnt come to the appointment due to work comittments and i thought it was just another blood pressure heart beat appointment. I got told this and got told i should have an amnio and think about possibly terminating twin a. Never the less i was so distraught. I had blood taken and i have a scan tomorrow at the womens and childrens hospital special medical imagary place. Ive been crying for hours thinking about terminating one twin and having the other one living in there with his dead brother. But seeing this now makes me so furious that they said these things to me! I hope the measurement is better tomorrow!!!
I hope you all still post and read this. Sorry its so long! x

 

[Tulip]

I simply CANNOT believe they are talking about termination with a 10.1 measurement. OMFG I am so angry for you right now!

FX FX FX the measurement is fine tomorrow, and if it's still 10.1 get scanned again in a week or two. Seriously, WOW xxx

 

[bekk63]

I know i couldnt believe it. Automatically im thinking the worse about if i continue the pregnancy with him, but now im alot more positive. Im only 21 and had the 12week downs u/s test and was something like 1:9999. Everything else on baby A was fine and normal. So im hoping its because he is in a horrible position, he is head down as well, his brother is head up feet down. Just praying its gone down or stayed the same. Anyone else from australia on here?
Anyone had experience with the fetal MRI? Can you request one on your own or have to be reffered? Thanks for your support!

 

[Sweetk1]

Hi, I haven't been on here to update for a while!
My son was diagnosed with VM at 33 weeks. His right vent measured 11.5mm, he had a scan right after birth and it was 12.6mm. The in uteruo scans are not 100% accurate as you can imagine how small 1mm Is so the margin for error is massive which is why you get such varying numbers each time it's measured.
Cut a long story short, my son is almost 5 months old now and he's just amazing!
He smiles, laughs, rolls, he sits up with support, plays with toys (absolutely loves grabbing and holding toys) he eats solids already and is doing really really well.
If you look back through the posts on this thread my story is amongst it.
Please please do not stress over measurements of 10 and 11mm, the stats are that your baby has a 97% chance of being totally fine! And from 12-15mm it's 77%.
Poster with the third ventricle enlarged, I don't have an answer for you but, you are one of quite a few people I've heard with the 3rd vent problem. If you go into the Hydrocephalus group on babycentre, the ladies there know lots about VM, hydro, and other brain anomalies. As I said please don't worry about 11 and 12,13 mm. I know ladies with babies who's vents were in the 20's at 20 weeks. And by birth were 70mm, YES 7cm and their babies are developing totally normal!

 

[phoebewyatt]

Hi all
Went to Newcastle tuesday and they said the ventricles were now measuring at 11.5 and 12mm but they suggested i have the 'amnio' again (think thats what its called for the downs syndrom test and again i said NO! as there is too much risk of miscarriage and as i keep saying he could be a healthly normal baby). They said another option was to have the Fetal MRI as that can also give more information so i am booked in a week from today in Newcastle for the MRI and we'll have the results the following tuesday which means i have to travel to newcastle both times but hopefullly i can claim the costs back. Im feeling a bit more possitive ATM and hopefully my little man will be perfectly fine he is very strong keeps kicking me soo hard little monkey hehe

 

[bekk63]

So I went into the Womens and childrens hospital and had another full morphology scan. Nothing is wrong with baby b, baby a is absolutely fine except the right ventricle is dilated. It was measure there by 3 people and they came up with the same number of 9.54mm. So down from 10.1mm.

I now have to have my care through there which is in the city and like a 45 minute drive away from me Oh well it must be donw. I have another U/s in a week as well as a MRI. They have ruled out downs and spinabifida as the spine is great and nasal bones etc in the right place. Also i have NO markers for downs.

They don't recommend an amnio for me as there is 2 babies and its not as accurate etc. But i can have it if i want, which i dont at all!

I was told if its isolated and the large ventricle is the only thing wrong with him, then he may be a little slower in learning etc, but he also may be normal. And we wont know until he is born and starting to meet milestones.

Also had the torch test and waiting for results to come back, out of the infections they screen for how many are 'curable' for the baby and will the ventricle go down?? All so scary! My poor little twinnie!

 

[Tulip]

Bekk, if he's down to 9.54mm his ventricle is no longer large, it's normal size! So even though they're insisting on transferring your care, your boy is NORMAL and you should consider him so in order to enjoy your pregnancy
Phoebe, your outlook is an inspiration, I hope your little man's vents stabilise soon and the MRI can give you some answers xx

 

[janey1975]

Hi all
Went to Newcastle tuesday and they said the ventricles were now measuring at 11.5 and 12mm but they suggested i have the 'amnio' again (think thats what its called for the downs syndrom test and again i said NO! as there is too much risk of miscarriage and as i keep saying he could be a healthly normal baby). They said another option was to have the Fetal MRI as that can also give more information so i am booked in a week from today in Newcastle for the MRI and we'll have the results the following tuesday which means i have to travel to newcastle both times but hopefullly i can claim the costs back. Im feeling a bit more possitive ATM and hopefully my little man will be perfectly fine he is very strong keeps kicking me soo hard little monkey hehe

Thanks so much for the update Phoebe. I am sure all will be fine. If you read Sweetk1's post it really does put things in perspective and is so reassuring. Do let us know the outcome of the MRI x

 

[Tulip]

Oh yes sweetk that was such a lovely update

 

[janey1975]

Bekk, I totally agree with Tulip 9.54mm is normal so I don't think you should think about him being delayed or with problems at all. Put it another way, if they had got that measurement first time around you would not have been put through all of this and instead been told all was fine. It's weird that once they get to 10mm once they seem so fixated by it even though the cut-off is, to some extent, arbitrary!

Sweetk1 - I am so very pleased all is well with your LO. He sounds absolutely adorable. I am really relieved for you and pleased that your story will be a great comfort to others.

 

[phoebewyatt]

Hi all,
Had my MRI on Friday and have to go back to Newcastle tomorrow for the results

 

[Tulip]

Good luck Phoebe, will be thinking of you x

 

[janey1975]

Thinking of you Phoebe. Please update us when you can. Sending you positive vibes x

 

[phoebewyatt]

MRI shows nothing to be concerned about and fluid on the brain is still the same around 13mm but if it stays the same or decreases its more likely baby will be fine, but the consultant seems happy that all should be ok, I need to come back in 8 weeks and they will have a look again and that far into pregnancy they should know what way the fluid will be going and be able to know more. But it looks positive I think so that's good xx

 

[Tulip]

Oh that's good, they sound very calm and positive! I'm sure your outlook has helped

 

[janey1975]

Phoebe, that is great news. The fact that the consultant was so positive and they don't want to see you for another 8 weeks is really good news. You have been so strong to have the MRI and to be so positive; I am sure things will work out great for you. Make sure you enjoy the next 8 weeks and keep us updated. Love to you and bump x

 

[blkdiamond]

Hello all.
Some of you might remember me but I posted a few pages back i thought I would update with how things are going. My baby girl is 5 weeks now. Her left ventricle measured 12mm at the last ultrasound. She seems okay but I find it hard to enjoy this special time because I feel I am always looking to see if she is developing normally. The hospital did not arrange any follow up after the birth as they do not feel concerned, but I am wondering if I should insist on further checks. Part of me wishes I never knew about the enlarged ventricle especially as things mainly turn out okay. Big hugs and good luck to all those undergoing investigations still.

 

[janey1975]

Hello all.
Some of you might remember me but I posted a few pages back i thought I would update with how things are going. My baby girl is 5 weeks now. Her left ventricle measured 12mm at the last ultrasound. She seems okay but I find it hard to enjoy this special time because I feel I am always looking to see if she is developing normally. The hospital did not arrange any follow up after the birth as they do not feel concerned, but I am wondering if I should insist on further checks. Part of me wishes I never knew about the enlarged ventricle especially as things mainly turn out okay. Big hugs and good luck to all those undergoing investigations still.

CONGRATULATIONS!!!!!! I was thinking about you the other day and wondered how you were getting on.

I do totally understand why you are worried. My LO is 9 months old and I am always checking to see if he is developing 'normally'. I jump on everything. It didn't help that at his 6 week check the doctor measured his head and it was on the 98th percentile and asked me to get the HV to monitor it! I flipped out and connected it to the ventricles but when the HV came round she discovered that he was around the 90th percentile for weight and length too, so all in proportion. She monitored it for a while and then stopped as there was no sign of an issue. Also, he was late to sit unaided (still throws himself back) and is not fast with his physical development so I have been worried there too. However, he is very quick to work things out, is very inquisitive and aware, so if I am thinking logically I know he is 'normal'. Babies all develop differently and they are quicker with some things than others. You will find this with your little girl when you inevitably compare her with others. Please do not panic because she won't be the first to do everything and that does not mean there is an issue. I know it is hard not to worry because it's like the issue during pregnancy has planted a seed and your mind and worrying makes it grow.

But if you think of it logically, you had both an MRI scan and an amnio and all were clear. The ventricle never got past 12mm. And you also had very detailed scans at Kings who are the best in the country. So, you have to believe she is okay; you have more reason to think this than most mums as she has had more checks. I know truly how hard this can be and I still struggle but keep telling yourself the facts. Also, if Kings were worried they would not have hesitated to recommend a scan as they are very very very thorough (that was my experience).

No go off and enjoy your lovely little girl