Spina Bifida - Experiences?

iolo

Someone in my family just got a diagnosis of spina bifida for their unborn child.

Specifically, the lesion is L4-5. There is no water on the brain yet (and therefore no need for a shunt yet), but they're told there's a 20% chance it will develop before birth. An MRI revealed some Chiari effect had taken place, but there was no other malformation of the brain or body. Amniocentesis revealed no chromosomal abnormalities. Heart was healthy and legs had not turned in or developed club feet. The fetus has been very active. He's a boy, which they've heard actually makes a big difference in ease of catheterization.

I'm trying to help figure out what they can expect, and am hoping folks here can help me with direct experiences related to spina bifida, either from interactions with family or friends or first-hand if you happen to have it. They have another boy who will be about three and a half when his brother is born.

brandotheninjamaster

My niece in law (dont know if thats an actual term or not) had this at birth. It took her a long time to learn how to walk and had to wear orthopedic shoes for a long time. Only being 4 years old she has learned to cope very well with it. She can run, play, squat; most of the things kids can do now a days. I dont see her on a regular basis so I'm not sure what the severity of her condition was, but still there is hope for that person in your family.

Rear Admiral Choco

Yeah, I knew a kid with this. No clue on the severity, but all it really did was make him walk a bit strange.

EggyToast

Many children are perfectly fine with it. It obviously slows their physical development a bit.

Some fetuses have particularly bad cases, and will likely die in the womb, be stillborn, or other fatal results. Typically these fetuses are aborted, for the sake of the mother's health, but their doctor should be able to give them more information if that's the case.

Dman

My aunt has spinal bifida.

I don't know how big a deal it was growing up, but as long as I've known her she's led a normal life with maybe a little more back pain then average but it hasn't stopped her from doing anything, she's even held manual labour jobs.

The only symptom she has is a slightly twisted/crooked spine.

I guess you will just have to wait and see how things develop, but its not the end of the world.

ceres

When I was in grade school, a friend of mine had spina bifida. This was the early 90's or so, and she could never walk at all.. as far as I know, she needed a wheelchair all through high school.

But she was a happy girl, and had no mental deficiency to my knowledge.

iolo

Thanks, All. This is a pretty overwhelming development.