23 weeks pregnant with a daughter who is confirmed to have severe ventriculomegaly (18 & 22mm)

[ezmi]

Hello,

Am 23wks pregnant with my second daughter and at my detailed scan at 19weeks, baby was identified as having severe ventriculomegaly and possibly other abnormalities, ranging from rocker bottom feet and overlapping hands to short long limbs.
Was offered an amnio and MRI screening within the next week and full amnio came back clear/negative and MRI confirms severe ventriculomegaly.
Been to the hospital weekly since and every week the swelling is increasing, MRI shows small cerebellum and suggests multiple disabilities after birth, on plus side the 'wrinkles' on the brain appear normal for gestational age.
Have had my moment of shock and upset and now am settled in my decision to continue my pregnancy and have met with the lead consultant of our NICU and Paed Neurosurgeon and must say that while they throw around the talk of 'choice to terminate' the team have been brilliant thua far..
Looking for anyone with similar experience or offer of practical support, eg contact to charity etc.. or just a chat.

didn't want to read and not post....

first of all congratulations on your pg - sorry your little girl has some problems, and wishing you lots of luck

do you have much rl support from family?

thank you..

have a very supportive family and while DAD is burying his head in the sand over this, he stands by the decision.
we both came from the Caribbean as young adults and it is still a taboo to have or talk about disability, and while this is no excuse I know he finds it very hard.. as for me I believe what is meant to be will be and would NEVER consider terminating the pregnancy.
have been keeping the pregnancy quiet thus far and only a handful of people know (for other reasons) and feel like its time my baby was announced to the world however 'different' or 'imperfect' she may seem to others.

I wasn't sure whether to post or not, as I'm not sure that our experience is really that similar. Our daughter was found to have ventriculomegaly during a scan at 29 weeks - but not as severe, and only in one ventricle. The initial measurement was 19mm, then 16mm (both time by u/s scans) and an MRI (the most accurate method) finally confirmed it at 14.5mm with a slightly enlarged third ventricle. So it was within the mild to moderate range, and there were no other problems spotted. When she arrived, the ventriculomegaly had come back down to normal levels, and she seems entirely normal now at 18 months.

I don't want to give you false hope that everything will be fine, but medicine is an imprecise science, and what seemed awful at one stage turned out well. In our case, the doctors also talked about the possibility of termination - and this was at 34 weeks! But my other doctor, the one who delivered me, was much more positive.

you could also try posting in the special needs thread, or antenatal choices, where others might have gone through, or be going through the same thing. There is also a charity called ARC, which I believe provides support in cases such as yours. The website is www.arc-uk.org/

I really wish you the very best with your pregnancy, and fingers crossed that the swelling will settle down or reduce. I know it must be an incredibly difficult time.

My daughter was discovered to have severe ventriculomegaly at 19 weeks and an MRI at 25 weeks showed both her ventricles to be 24mm. We were told she had a 95% chance of severe disability, she is now two and developmentally normal, her ventricles were 16mm by MRI after she and her sister were born. I'm so sorry to hear that you are going through a similar pregnancy and concious that I'm very lucky to have the outcome I did. I will be thinking of you.