What do you know about spina bifida?

[vettechick99]

All I really know is that's why I take folic acid. But also just a little about the disorder....something about the spinal cord not really forming as it should.

The reason I ask is that a friend of mine's baby just was diagnosed. She's only 8 days old and it's been very difficult for the whole famiy. This is part of the email I got today and I'm just trying to get a grasp on the diagnosis.


As many of you have already heard, within a few minutes of her birth Austin and the doctors realized that something was wrong with our precious baby. They discovered a dimple on her back (right above the buttocks) as well as another area that appeared to have a cyst. Within a few days she had an ultrasound that confirmed our fears that she had a tethered spinal cord.

Last Friday, we had an MRI done of her spine and brain which showed the tethered spinal cord in more detail. Katherine has Spina Bifida Occulta - the most benign of all the Spina Bifida conditions. She will have to have surgery to correct the problems with her spinal cord and so we are talking with pediatric neurosurgeons now to decide upon the best approach for her surgery. She will probably have to have surgery within in the next few months. All of the doctors we have spoken with so far are very encouraged about her future prognosis since this was caught so early.



I went to webmd, but was hoping for some first-hand knowledge.

Anyone?

 

[Deb in IA]

Many of my patients have varying degrees of spina bifida.

This website is very helpful:

http://www.sbaa.org/site/PageServer?pagename=index

 

[aimee11621]

I know of a neighbor who was pregnant back in 2001. The baby was diagnosed with spina bifida.

I can to tel you this much the baby was born and was doing well she had her surgery. Two surgeries!. The prognosis was very good !!!! lots and lots of occupational therapy. She is alive and doing well.

 

[jerrysboy40]

I don't know much, but I think it depends on the severity of the Spina Bifida. You are right, the spine does not fuse together. Depending on the severity you may not be able to walk, and be wheelchair bound. In less severe cases you may have to walk with crutches. I may be wrong. I'm just going on things I have heard.

 

[tarmand]

My step father had Spina Bifida and never had a surgery. He did have back problems, but not so severe that he couldn't walk. He died at age 46, but it was from an aneurysm.

 

[Blondie]

After years of back pain and numerous x-rays, a radiologist finally diagnosed my problem this year, Spina Bifida Occulta.

It sounds worse than it is, but I'll always have chronic back pain because of it. Many people have SBO and don't know it until they are x-rayed.

 

[wdwpluto]

My 28 year old cousin was diagnosed at birth. He wears leg braces and walks a bit stiffly, but as a teen he skateboarded and did just about everything his friends did. He can pretty much outrun me Just wanted you to hear a bit of a positive story.