ventriculomegaly

hi im new at this an hope iv posted my comment in the right place... please advise other wise :( first time pregnant, i had a 20 wk scan an it showed that my baby has 2dilated or inlarged ventricules (i think that is the correct spelling) and since then iv had a further 2 more scans blood test and an a anmio the blood test have come back all fine and i am still waiting for the anmio which is unlikly to show anything i am now booked in on wednesday for a MRI another scan next week as i am now 25 weeks... if anyone has been through this could you please share your story as i am so scared at the moment that there is something wrong with my baby as the doctor keeps saying that we should think about aborting if thats the road we chose to take??

Hi Bernie25 and welcome to BB.
I am very sorry that you have joined us under such stressful circumstances. I don't have a personal story to share with you, but I wanted to welcome you anyway.
I thought ventriculomegaly was something easily managed with a shunt? Perhaps it is different in a neonate... In any case I am so sorry that you have been put under such incredible stress. I hope someone more knowledgeable can come in and help you soon.
We are all here for you to chat to if and when you may need it. xx

Hi and welcome to the forum

I'm sorry I have no advice to give you, but we have some very knowledgeable members here so hopefully one of them will be able to help you with some answers :hug:

Hi Bernie. Welcome to BB. I'm sorry you've joined us under such stressful circumstances.

My cousin's son was diagnosed with ventriculomegaly at her 20 week scan. The prognosis ranged from having a normal, healthy baby to having a child with disability (ranging from mild to severe) to stillbirth or neonatal death. She was offered the opportunity to abort and flatly refused even though she already has a daughter with fatal genetic condition. Her son was born slightly premature (36 weeks) but is a healthy, happy 18 month old.

Sometimes I wonder if all the antenatal scans/tests are worth it. In my cousin's situation, they had identified that her son had a higher risk of disability or death, but it was far from a diagnosis. At least she could prepare herself for the worst I guess, but it caused her a lot of stress, which in her case was unnecessary.

I hope it helps to hear of a happy ending. And I hope you get to have one yourself. All the best :hug:

thanks so much everyone, i still havnt heard anything its just a waiting game really i hope anyone that reads this that went through the same thing had large ventricules will please tell me there story??

Hi Bernie,
I just wanted to say Hello & let you know that I am going through a similar thing at the moment. At our 19 week scan our baby had ventricles of 10.x mm and 11.x mm. No other issues were found at all so it is called mild isolated ventriculomegaly. We saw the gamut of specialists at the hospital and it was all very scary. We have had very conflicting advice from the hospital as our case is a bit weird in that it resolved within 1 week (at a 20 week scan) down to normal levels (7/8mm) which was found while we were prepared for the amnio (which we then didn't do).
In the meantime I did a lot of reading about the condition and we also spoke to geneticists, neurologists and 4 different ultrasound obstetricians - all of whom gave slightly differing advice/outcomes. We have been told that even though the ventricles resolved that we are still in danger for chromosomal issues and brain structure stuff too - so we might still have an amnio and MRI. They have mentioned terminating the pregnancy to us as well and it is all pretty awful to contemplate.

What is the size of your baby's ventricles? Have you got your amnio results back yet? I'm sure that the doctors have told you that it can sometimes reslolve itself and doesn't always mean the worse case scenario. Particularly if you have ruled out viruses and chromosomal issues as it sound like you have done.

I'm so sorry you have to go through this as well, it is very stressful. I really hope you results for all the tests are good news.
Andrea

anyone have any info on ventriculomegaly? just found out my baby's ventricles are measuring 13mm, what are the chances this will resolve itself before birth? what kind of disabilities might my child have if it doesn't?

accourding to a wiki search, ur bubs 13mm comes under the mild category, and 90% of bubs with a mild form of the condtion go on to lead perfectly normal lives and often resolves itself.
big big hugs hun, i know this is a very very scary time for u

Just wondering what happened to OP's bub or if anyone else has had experience with this.

Our bub has severe ventriculomegaly and the specialist seemed to think the prognosis was very bad. Just after others' expereinces, if any.

this showed up on DD2 20week scan, it was mild and resolved itself. She is now a perfectly normal (if not smart for age) 4.5yr old... I could try to find the scans to see what the measurement was??

My cousin's son was diagnosed with this inutero. At their 20 week scan it measured 10.05mm (anything under 10mm is normal) but 3 weeks later it measured 14.6mm which almost put them in the severe category and concerned the specialists because it was such a significant growth in a short amount of time. She was offered a termination, but apart from being born slightly early (at 36 weeks) her son is a happy, healthy and boisterous 2.5 year old.

I know that ventriculomegaly can be associated with chromosomal abnormalities. My cousin did have a CVS at 11 weeks ruling this out. I'm not sure what sort of a difference that makes to the prognosis.

tash - Let me know if you would like me to put you in touch with my cousin. Her daughter was born with a rare genetic condition so the prospect of having another special needs child was difficult and made for a very stressful pregnancy.

Tashy my dd1 had this diagnosed at 20wk scan, they were very worried about it and discussed worst case scenario, I had an amnio and mri on bubs, all came back clear. As she got bigger it started to resolve and by 36 weeks was almost normal. But......DD has a genetic condition called 1p36 deletion syndrome, and the enlarged ventricals are one of the indicators, but her syndrome doesn't get tested on a standard amnio.