Looking for spina bifida support

[marenian]

Just wondering if anyone here has any knowledge of spina bifida support groups. My little sister found out last week that her baby has spina bifida. She is due in April. I'd love to give her some places on-line to find support although she has a great support network around her.

Thanks.

 

[terri01p]

Just wondering if anyone here has any knowledge of spina bifida support groups. My little sister found out last week that her baby has spina bifida. She is due in April. I'd love to give her some places on-line to find support although she has a great support network around her.

Thanks.

My 25 year old dd has spina bifida, I never knew anything about spina bifida until I had my dd. There is a support group online but I have forgotten the web address ( sorry, I know someone will have it ). I often wonder if it's the best thing for someone to join an online group until the baby is born to see how serious it is, it may cause a great deal of stress. Also what state is she in ? This can be very scary time...GOD Speed and good luck !
There is another parent that's goes by mom of the rolling crew ( because I always want to steal her name when I read it ) I know she has some dd that have spina bifida and can probably be of great help.

 

[Michigan]

I have 2 daughters with SB. They both have January birthdays and will be 10 & 18.

 

[terri01p]

I have 2 daughters with SB. They both have January birthdays and will be 10 & 18.

Isn't that funny how that quote " mom of the rolling crew " has stuck with me...hehehe.
I knew there was someone else that has young children that might could be of more help. Thanks
My dd has a very severe case of spina bifida and I'm afraid that I might come across not as encouraging.

 

[allie_to_you]

My DH (35) has SB. He has a very severe case of it and he still lives a very full life. He has gone through many surgeries (Herrington rods in his back to help straighten his back, he has a colonostomy, no continence control, shunt in his brain, etc), but he never lets it get him down because he has always had love & support, which is the most important thing you can give to your child. Always let them know that they can do anything, despite whatever disability they have.

My DH still drives his own van & goes to work everyday. He helps me out around the house as much as he can and he is an amazing husband & best friend.

 

[MidgeD79]

I have had 3 children with spina bifida. One was diagnosed after birth, another at 24 weeks gestation and the other at 4 years old (after the other 2 were born and there was a "history"). I don't know what's better - before or after. There are many variations of spina bifida and my kids were on both spectrums. There are many local chapters and the spina bifida association of America should be able to help her find a local chapter. Keep your focus postive - How exciting a new baby!