Dear Anonymous

Dear Anonymous,
I am so sorry for your loss, and your fears. I wish I knew more. Some researchers suggest that there is a genetic component to DW, and are citing specific sites on the DNA. Other "experts" (and you'll find no one is pointed to as the guru) maintain that the causes are unknown. There is also some distinction between DW Syndrome, DW Variant and DW malformation- I'm not sure exactly WHAT the distinction is, but apparently some people have only certain components of the malformation, and some "do not have the genetic component." I don't know what this means. I expect, though, that if you and your husband were both tested, that somebody knows what they're looking for.

There is wildly variable understanding about the condition. Our daughter's pediatrician, OT, PT and Speech/Language therapists all had to look it up. So did her Special Ed teacher. But then, her DENTIST (of all people) knew all about it and had worked with other cases!

I suggest you join the yahoo group Dandy-Walker_Syndrome@yahoogroups.com, and also explore the site for the Dandy Walker Alliance.

We adopted our little girl, and the birth mother had not had an ultra sound. In any case, the DW impact was not severe enough for us to need medical intervention, so we only found out when she was 4. Please feel free to comment again, and you can leave me contact information if you'd like an extended discussion.

Sending you blessings,
Laurie