who knows anything about spinal bifida

My grandson was born with it. He also had other complications. He lived for 6 weeks and passed away. My daughter has had another child since then who is doing very well and has no illness.She was told that she had to have the folic acid for the pregnancy and that she was still at great risk because it is a hereditary risk factor.This child was born without any complications.

Three years ago my son was born with spina bifida and hydrocephalus. His condition gives him deformed feet and legs that are different lengths plus weak. He is unable to walk and will be getting a 'rabbit' which is a standing frame on wheels and a self propel wheelchair. At the moment I push him around in a Phil and Ted's buggy with my baby daughter. He needs catheter care day and night. We have to do leg exercises every day. He has a pair of split type boots one with a platform to address the issue of different sized legs and a pair of gaters.

My Sister was born with alot of problems and this was the many one she was born with. She lived with this and many more problems untill she was 13 years old. She was the many who could not walk due to this problem. Spinal bifida is very serious and once I had my daughter I was at a high rish of having achild with Spinal Bifida. My daughter has no problems as I did take the Folic Acid thru my pregnancy. Anybody who is born with this knows it is very serious condition and there is nothing to do to prevent this once it happens. Im gladetohear you can walk and function properly. This lets eveyone know everyone deserves a chance and god only ive you what you can handle!! GOOD LUCK!!

I was also born with spina bifida and am living a very normal life, I read in some of your other comments that you are just wanting to get the word out about spina bifida and I think that is a wonderful cause. Over the years I have been to many dr. appointments where there were children with the same thing I have and were unable to walk, among other problems. Really I count myself so lucky that I have done anything and everything that I have ever wanted to. I have not been disabled my whole life, I have a little more trouble with my back now, but I am still able to walk and all. It really is sad that sometimes it is preventable, because one of the causes is lack of folic acid during pregnancy. I personally have two healthy children, but I also found out that there is a gene passed on by the father that can cause the issue, and my nuero told me I could not give it to my children.

I was also born with spina bifida, I am not sure if I can be of any help but I will try to answer any questions you have. Unfortunately there are multiple types so each one can have different effects on different people.