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tiffany0727
member
Mother of An Angel - 11/12/09
Moderate Ventriculomegaly
tiffany0727
member
Hello! My two year old son has seizures, low muscle tone, moderate ventriculomegaly with white matter loss, and BESS. I am pregnant with boy number 2 and we have discovered that his ventricles are measuring in the moderate range as well. His right is 14.1 mm and his left is 11.2 mm. The doctor seems very concerned, especially since I have a son already with moderate ventriculomegaly. He is concerned for hydrocephalus...since we are less than a mm away. I should also mention that his ventricles jumped from the "upper end of normal" (9 mm) to what they are now in about seven weeks. We are being monitored closely now and are high risk. We are getting ultrasounds every visit to monitor him and his development. Nothing else is wrong...everything else looks great. My first son had a gambit of tests run and he has nothing wrong with his DNA or anything else. I guess my question is...what are my chances that the ventricles will get larger or smaller? Should I prepare for the worse? Any help, words of wisdom/advice, and just support would be great. Thanks so much.
Mother of An Angel - 11/12/09
This discussion has been closed.
Re: Moderate Ventriculomegaly
Our daughter also has moderate ventriculomegaly/hydrocephalus. What we really struggled with prior to her birth stemmed from our first doctor telling us the worst case scenario was inevitable. What I discovered through all of our appointments after that-with a different doctor-is that the numbers don't mean much until the baby is born. Our daughter's numbers went up and down and up and down, as I'm sure you know with your first son.
Another doctor during our journey said that the difference between ventriculomegaly and hydrocephalus is semantics. Yes, hydrocephalus is more "severe," but how it affects each child is different. The size of the ventricles aren't exactly the issues, but rather the pressure and how the brain is doing. If they said nothing else is wrong, that is great news! Celebrate that!
What I am trying to say, is that I am thinking of you and your family and can understand how difficult and stressful this must be, but I am also trying to encourage you. Everything the doctor is telling you is based on an ultrasound that isn't exact. And you are talking about mm.
I hope all goes well and please keep us posted!
Mother of An Angel - 11/12/09
I hear you on the stress! I still feel like I didn't get to enjoy my pregnancy the way I always expected to.
Our daughter has developmental delays. She is almost 14 months and is able to sit up, but doesn't pull herself up and can't sit up without someone there because she ends up falling...hard! She has come such a long way, though!
Sometimes I see or hear about other kids with hydrocephalus and a shunt that are doing better than she is physically and I get frustrated, but I realize that everyone is affected differently. I really wouldn't change anything about her for the world. She is amazing!
I do worry though, and I can imagine what you are going through because I worry so much about future children. But like I said, the numbers don't mean anything right now! Once he is born, you can get an assessment of what you are really dealing with and you will be able to navigate the best care for him!
I added you as a friend on here and please do keep me posted!
I feel the same way about this pregnancy. So much stress and worry, and just waiting for the next ultrasound to see if things changed. I try very hard to be positive and to get excited (and I am regardless of what will happen). My son is doing much better. I know we'll probably have a hard first year again, but after that it was a lot easier. I just didn't want this child to go through what he has been through.
My son didn't pull up onto furniture until 15 months. He army crawled at 11 months and crawled on hands and knees at 14 months. We got him physical therapy, which was a God send for us. He used a walker for a while, but at 18 months was using that to get around the house. At 21 months he finally started walking on his own!
He is 25 months now and is finally running, just started, but stairs are a big problem. He just can't yet. His expressive communication was delay, but not his receptive. He is a smart kiddo. He understood everything, but got so frustrated he couldn't express himself. Now, he is putting sentences together and saying new words every day, and he is close to being on track now with speech. He knows his colors and most of his letters, but numbers he just isn't interested in. I'm just telling you all of this because they sound like they were in the same boat, and he is a little older, so I hope that makes you feel better! He is catching up very quickly, even with his white matter loss (due to the enlarged vents), which the doctor feels he has compensated for.
He does have seizures, but they didn't start until this pregnancy. Doctors are sure why.... Could possibly be the white matter loss. They just don't know.
Having another child was a big concern. It is, however, very rare that you have another with ventriculomegaly. We were just one of the like 2% (I think...I will try to find that article again).
Thanks for adding me!
I added you back. I'm also on facebook (I'm more active here):
https://www.facebook.com/tiffany.r.johnson
and here is my blog...
https://thebirdsofthesky.blogspot.com/
It really is only used for sharing our story with ventriculomegaly. I looked everywhere for personal stories, and they are very hard to find, so I added mine.
Mother of An Angel - 11/12/09