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Discussion Starter · #1 ·
Hi everyone,
I was just reading a previous post about this subject, but everyone kept suggesting to new posters that they should start a new thread to say hi, so I thought I'd do that!
I'm 22 weeks pg with my fourth baby (a little boy) and have been told that he has this. They said he has a partial agenesis of the cerebellar vermis, but he doesn't have any enlargement of the ventricles, which seems to be a really good thing. I know there are some ladies on here who have experience with this, so I was wondering if I could ask a question or two.
My main question is, if at this stage he doesn't have any enlargement of those ventricles (which I guess would lead to, or maybe be the same thing as hydrocephalus?), is that something that's likely to happen later on?
We haven't been offered an MRI. Do you think I should ask for one? I've refused the amnio, but we are having an echocardiogram later this week because it looked like he had some calcifications in his heart (although everything else about the heart looked great).
The only other "problem" that showed up was with one of his hands. It looked like it may not be formed properly, but then again, I think it still could just be the way he was holding it.
I've been researching this condition as much as I can, and I have to say, I feel a lot better than I did when I came out of the doctor's office. They presented a much more grim picture than the one I have found in my research.
Thanks so much for any info you can give me!
 

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My daughter has Dandy Walker and hydrocephalus. I'm available if/when you need to talk or have questions. If you PM me, I'll give you my blog address and you can see her. She's AWESOME!


The statistics say that most kids with Dandy Walker do not have hydrocephalus (though a very large portion do). My daughter's ventricles were fine throughout the pregnancy and were only slightly enlarged at birth. She had pretty severe hydrocephalus within two weeks of her birth and had to have two shunts placed when she was 17 days old. I'm not sure there is any way to know what to expect with your son. I SO wish I could reassure you. Honestly, I would prepare for hydrocephalus in case it does happen.

Do you have a pediatric neurosurgeon you could have a consult with?

I'm not sure how I would feel about the MRI. Will the result change your course of action? My daughter had an MRI the day she was born and that gave us all of the information we needed.
 

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Discussion Starter · #3 ·
Thanks so much for your reply! I think we're getting to a pretty good place of being positive but prepared, if that makes sense. It didn't seem to me that the MRI would really change much, other than to rule it out if he really didn't have it (although the combination of factors they saw makes me think he probably does). I tend to think the fewer tests the better, so I don't think it's something I will ask for.
They did mention something about a pediatric neurosurgeon we could meet with. I guess they may talk to us more about that on Friday at our echocardiogram.
I will definitely pm you. I would love to read your blog!
Thanks again!
 

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Mam
Quote:
Originally Posted by Mamatohaleybug View Post

My daughter has Dandy Walker and hydrocephalus. I'm available if/when you need to talk or have questions. If you PM me, I'll give you my blog address and you can see her. She's AWESOME!


The statistics say that most kids with Dandy Walker do not have hydrocephalus (though a very large portion do). My daughter's ventricles were fine throughout the pregnancy and were only slightly enlarged at birth. She had pretty severe hydrocephalus within two weeks of her birth and had to have two shunts placed when she was 17 days old. I'm not sure there is any way to know what to expect with your son. I SO wish I could reassure you. Honestly, I would prepare for hydrocephalus in case it does happen.

Do you have a pediatric neurosurgeon you could have a consult with?

I'm not sure how I would feel about the MRI. Will the result change your course of action? My daughter had an MRI the day she was born and that gave us all of the information we needed is there anyway i can talk to u?
 
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