Hi, my DD has spina bifida and hydrocephalus. I got the diagnosis at my 20-week u/s and was totally devastated. It was the worst couple days of my life and I had a hard time enjoying the rest of my pregnancy. But I have a beautiful 13-month old now who is the most amazing baby ever.
There is a lot of information out there about SB, a lot of it is outdated. Be wary of what your perinatologist tells you about SB and make sure you get an appointment with a neurosurgeon (NOT neurologist) who deals with SB. There is an SB moms group on babycenter.com and has a ton of information. There are also a lot of moms who have blogs, which was very helpful to see their kids are very normal and happy kids.
Good luck at your appointment. If you are confirmed with SB, feel free to pm me and I'm happy to share all kinds of information about it!