Borderline bilateral ventriculomegaly at 22w - support thread!

[sam1531c]

congratulations for getting the all clear. wish you all the best for your pregnancy and new arrival.xxxx

 

[Butterflylts]

Thank you! I just re read my post and It meant to say MRI not mmr ( sorry for the confusion). Sam have you got your MRI results yet and when is your next scan? Hopefully it makes you feel a bit better that at 20 weeks my boys ventricles were both measuring between 10 and 11 and by the time I got to 23 weeks they had reduced to Between 9 and 10 mm. Did you do the TORCH test? Anyway, sending you my best wishes, I really do think everything will be fine for your baby boy. x

 

[sam1531c]

Thank you butterfly, i have the MRI tomorrow and had the torqhe (not sure how spelt) last week. i go back to see the consultant tuesday for a rescan and results. I saw midwife today and she reminded me that whilst i am now worrying over the mri i should remind myself that it was optional and the consultant wasnt overly concerned to push me for it.
its a worrying time and i only hope that they havent grown more when i go for a scan tuesday, it has given me soooo much hope that your little boys reduced and i am sooo happy for you. The consultant who is soo good couldnt express how much that at 20 weeks it is so common for boys ventricles to be larger and it is in the next 4 weeks to follow that they shrink as the head grows. fingers crossed thats what happens with my little man...who my 8 year old son has names 'archie' xxx

 

[sam1531c]

forgot to say ive taken part in a study aswell, my profession is as a social worker and am currently at university doing my nurse training and was aproached to take part in research as to wether or not NHS should fund MRI scans in situations when ventricles are only slightly enlarged or wether it is not good use of money and causes more stress to parents to be having the scan and waiting for results, also if an MRI changes the course of action arents take as the ventricles are only slightly enlarged.
Any feedback in regards to MRI experiences apreciated...i personally feel quite stressed by it but my husband says hed rather know and be forewarned if there is anything.
Sorry for rambling on.x

 

[Sweetk1]

Quick update- well my son is 7 weeks old now, he's adorable such a good baby.
His right vent was between 10-11 during pregnancy. When he was born they scanned him through the fontanelle and the right ventricle was 12.6 and the other normal.
Fast forward 7 weeks, his right vent is now 17mm.
My consultant is not overly concerned about the measurement yet, but i am obviously.
All of my tests were clear too, CVS TORCH.
I think eventually my son may need a shunt, but I'm ok with that if it saves his life.
Other than that he's doing great, smiling away at me.
I wish everyone the best of luck, and remember large or asymmetrical vents are actually a lot more common than you think.
97% of vents measuring 12mm or less have a normal neurodevelopment outcome.
77% if the vents are between 12-15mm

 

[blkdiamond]

hello all. After a rescan on monday the ventricles measured differently, both were about 11mm. They found i had parvovirus but was not sure if it was recent or a past infection. I was reffered to the fetal medical centre at kings where i had a detailed scan and an amino. My mri is in about a week. I worry because this problem is not common in girls so i feel there is more chance of an underlying problem.

To those who have the all clear congratulations.

sweetK1, i know it is hard but if the consultant is not worried that is a good sign. I send my prayers to your LO and to all going through this.

 

[Tulip]

Oh Blkdiamond I'm sorry it doesn't seem to be going too well for you If I remember my research rightly, the enlarged vents may be a leftover reaction from the parovirus and therefore not something that will increase the size of the vents in time. I wonder also if the polyhydraminos may also have an effect. I hope the MRI gives some reassurance and the amnio results are clear.

Sweetk1 your little boy sounds like an absolute joy, I bet he's a right cutie. Hopefully docs will decide on a shunt sooner rather than later for you

 

[Butterflylts]

Thank you butterfly, i have the MRI tomorrow and had the torqhe (not sure how spelt) last week. i go back to see the consultant tuesday for a rescan and results. I saw midwife today and she reminded me that whilst i am now worrying over the mri i should remind myself that it was optional and the consultant wasnt overly concerned to push me for it.
its a worrying time and i only hope that they havent grown more when i go for a scan tuesday, it has given me soooo much hope that your little boys reduced and i am sooo happy for you. The consultant who is soo good couldnt express how much that at 20 weeks it is so common for boys ventricles to be larger and it is in the next 4 weeks to follow that they shrink as the head grows. fingers crossed thats what happens with my little man...who my 8 year old son has names 'archie' xxx

Archie, that is SUCH a cute name.. So, how did the MRI go? Did they give you any more information today? I hope it went well and wasn't too stressful x

 

[samjc1531c]

Oh butterflylts what can i say!!!!
the mri was the worse experience ive had in years. I was in tears for an hour after and im not the most emotional person. They did tell me with being pregnant it would be uncomfortable well there was no room and i managed to stick it out for 15 minutes then ended up having a slight panic attack from being so enclosed. I had to press the buzzer to be got out The scan woman said she was struggling to get good images due to how active my baby was with the noises which she said was normal and that i may have to be recalled back, i was so upset i said im sorry but im not coming back i cant physically go through it. The only positive is that my consultant at the fetal medical centre did not push me for the mri and said we could decide ourselves but that it wouldnt alter anything as she was quite sure nothing major would show so we definately said we would have it done as the more information we had the better, but i feel so awful that it didnt go well but im back with the consultant next tuesday so will see what the rescan shows that is what i am more nervous about as im hoping it hasnt grown from 10.4mm.
sorry for babbling on (again), another good point is my little man is moving non stop and im now feeling kicks as well as flutters

 

[samjc1531c]

blkdiamond, what i want to say is try not to worry but i cant follow that advice for myself as its all i do at minute, after everything ive looked at the positive is that the ventricle reading is within the lower end of what they are concerned with. I am sending a positive hug and am sure everything will be ok.

 

[samjc1531c]

sweetk1, i found your update so inspiring just hearing that you have a wonderful baby who is doing well, i am soo happy for you and hope you end up getting the results you want soon.xxx

 

[Butterflylts]

Sam, I am so sorry to hear it was such a traumatic experience. It's sounds horrible and v stressful and I'm surprised they suggested that before rescanning and waiting for the TORCH results. My little boys ventricles had reduced 10 days after my 20 weeks scan. Anyway, I think you are right to wait for torch results and next scan before deciding on another Mri scan. From what you have said, that baby looks normal besides the one ventricle which is only slightly enlarged I really don't think you have anything to worry about. Try to distract yourself until your next scan and torch results, I know it's hard but I'm sure you will get reassured and hopefully they will tell you an MRI isn't necessary after all. All the best x

 

[sam1531c]

Thanks butterflylts, yes im keeing busy ands trying to stay positive. I have now reached the conslusion that no amount of worrying i do can change things so i am trying to stay upbeat and positive, the horrendous experience i had with my first pregnancy (cervical cancer) has actually helped as i remember the worry and distress and how things came good in the end. i will be glad when tuesdays done with especially as i have just been told its a stand in consultant not my normal one who i love she is fab. xxx

 

[samjc1531c]

Oh my goodness!!!!!! Went back to see specialist today nervously..they said mri had shown babys ventricles normal and torque bloods normal!!! They rescanned baby and the ventricles have shrunk and are now well below the average and within normal !!! Yippee...i have to go back in 5 wks for a routine scan but not because of concerns. thank you for all your kind words and hope this gives people hope that things however bad can change.xxxxx

 

[Tulip]

That is absolutely fantastic! Enjoy your pregnancy!

 

[samjc1531c]

Thank you tulip..not just for your kind words now but the info and advice youve shared throughout.xxx

 

[Tulip]

Aww thanks hon I'm just so glad we are able to give hope at a terrifying time, and now there is a group of us to support those who need it.

Would be lovely to see piccies when your LOs arrive!

 

[janey1975]

Sorry I have not been on here for a while but been away at half term and then LO has had a virus! Anyway, I am really glad to read such positive stories on here. It's great to read that Prof Nicolaides was able to reassure someone else about their baby - he really is a god in my book.

So pleased for you Samjc. For those still waiting for news please try not to give up hope. Remember that the vast majority of cases work out really well. Thanks to whoever (sorry I can't remember) it was who provided the stats. I think a lot of us got caught around the 10mm mark at a time before the brain and the vents all settle down.

Thinking of those still waiting to hear. So pleased this forum continues to offer lots of hope and support to others. I know how much it helped me - thanks Tulip for setting it up x

 

[mare]

Just reading updates and so happy for all of our positive news and thought

 

[blkdiamond]

I have not updated in a while. I have no more appointments for now. Amniocentesis and Fetal MRI were clear but the left ventricle is still enlarged (12mm). I am at 38 weeks now so just waiting to give birth and will hope she is okay.

Thanks for all the support from the people on this thread.