Parents of children with Spina Bifida?

My son James was diagnosed with Spina Bifida (Myelomeningocele) and hydrocephalus, I am curently 30 weeks pregnant with him and his twin sister Adria. So far I haven't been able to talk to anyone who has a child with Spina Bifida, most people aren't even aware of this birth defect, I know I wasn't.I'm worried, but taking it one day at a time. I just wanted to know if there are any other parents on this forum with a child like James? I'd like some information on this, from someone with experience with it. I hope there is someone out there.

Thank you.

Quoting Dreams_Away:“ My son James was diagnosed with Spina Bifida (Myelomeningocele) and hydrocephalus, I am curently 30 weeks ... [snip!] ... I'd like some information on this, from someone with experience with it. I hope there is someone out there. Thank you.”

My BFF in school had Spina Bifida.

My son has cerebral palsy, I am an early intervention teacher and have worked with many children with SB and have friends with children with SB too..

Quoting Dreams_Away:“ My son James was diagnosed with Spina Bifida (Myelomeningocele) and hydrocephalus, I am curently 30 weeks ... [snip!] ... I'd like some information on this, from someone with experience with it. I hope there is someone out there. Thank you.”

I'm sorry for what you asre dealing with.

I knew someone with a child with SB and he needed a temporary brace, but did very, very well

I have no personal experience, but a friend's gf has spina bifida and leads a pretty fullfilling life. She works, enjoys outdoor activities, etc...
So your son can still have a very normal life.

congrats on your twins!

I have a little boy born December 2007 who has spina bifida. I found out 16 weeks into my pregnancy that he had this condition and like you I had never heard of it. My son is doing very well, much better than any of the doctor's originally said. He is now 2 years old and is up walking in a walker and wears AFO's (little light plastic braces worn under the pants that go from just below the knee to the bottom of the foot). We expect him to eventually walk with crutches or a cane. I try to let him go and explore and be a regular two year old, and he is. He is in to everything, and has many friends his age. He is very well adjusted socially and kids his age don't care, they just accept him a play with him. It is very overwhelming and scary sometimes, but you stay strong and do what you have to do and you'll be surprised just how resiliant they are. My son made it out of the hospital just 8 days after birth and he was 4 weeks premature and had the back closure surgery and a shunt placed.

Quoting ceely:“ I have a little boy born December 2007 who has spina bifida. I found out 16 weeks into my pregnancy that ... [snip!] ... out of the hospital just 8 days after birth and he was 4 weeks premature and had the back closure surgery and a shunt placed.”

Thank you Ceely, your post was very nice and helpful.  

I am 20 weeks and 5 days along. I found out about two weeks ago my boy would have spina bifida (the mylemeningocele) and hydrocephalus. The doctors have really been frightening me recently with all the complications that your child has the possibility to suffer from. It was greatly inspiring to read your post Ceely, thank you! For one I was under the impression I'd be waiting by his side in the hospitol for a month atleast. It's such a rare condition it is hard to find mothers to relate with, or learn from. Thanks again & good luck with your baby & family.