MMC Spina Bifida

Rebekah
Hey ladies,
  Has anyone else's baby been diagnosed with Spina Bifida? They saw a cyst on the spine at our 20 week ultrasound and then we had level two ultrasound last week at 22 weeks that confirmed it was a MMC, the most severe form of Spina Bifida. We're scheduled to go to a special children's hospital next week for a whole battery of tests. Has anyone else had to deal with this, any thoughts or stories about living with Spina Bifida?