Originally Posted by jordanac
Hi all -
It's has been awhile since I have posted to this board. I am pregnant with twin - boy and girl - due in the summer. A week and a half ago I had my mid-pregnancy ultrasound. The radiologist mentioned in his report of our little girl that he could not see a clearly defined vermis on the cerebellum and that he was stating this could be Dandy-Walker Malformation. There was not a cyst present nor was there hydrocephalus.
I can't write much now, but we dealt with this diagnosis with my DD2 (now 18 months old), and I wanted to emphasize something that I wish we'd known in the beginning:
Dandy-Walker malformation -- whether the classic type, or the variant -- can't be diagnosed by ultrasound or CT scan. It's essential to have an MRI, and the film has to be read by a neurologist or neurosurgeon, not a radiologist.
In my DD's case, the MRI (which was done when she was a month old) showed that the vermis was present after all; it was just pushed out of place by a larger than usual cisterna magna. This is considered to be a benign anatomical variant. Some people consider it to be the very mild end of a "Dandy-Walker spectrum," but our neurosurgeon doesn't agree, since it's not associated with any of the symptoms that are commonly found with DWM or DWV.
OTOH, if your baby has any kind of cerebellar malformation, that can be a marker for other stuff going on. My DD turned out to have a congenital heart defect. But that's certainly not a given; many of these children turn out to have no problems. When I was first looking into this, I remember reading one study in which they did autopsies on babies who'd been aborted due to a prenatal diagnosis of Dandy-Walker, and the majority turned out to be perfectly normal. Seems like there was some overzealous CYA going on there.
Of course, this isn't to say that it's no big deal. I think there is (or was?) a mother on here whose daughter has DWM, and is dealing with a lot of medical and developmental issues. But there's a very wide range of outcomes, even when the diagnosis is confirmed. I found this page
to be a pretty helpful in explaining that.
In any case, I hope you can find the information and support to help with whatever challenges might come your way.