Tuesday, October 4, 2011

Spina bifida awareness day 4

Spina Bifida does not just affect ones mobility. It has a much broader spectrum. I am going to discuss a few more of the tailspin affects that an open spine and damaged nerves cause. 

A neurological complication associated with spina bifida is Chiari II malformation—a condition common in children with myelomeningocele—in which the brain stem and the cerebellum (hindbrain) protrude downward into the spinal canal or neck area.  This condition can lead to compression of the spinal cord and cause a variety of symptoms, including difficulties with feeding, swallowing, and breathing control; choking; and changes in upper extremity function (stiffness, swelling).
Chiari II malformation may also result in a blockage of cerebrospinal fluid, causing a condition called hydrocephalus, which is an abnormal buildup of cerebrospinal fluid in and around the brain.  Cerebrospinal fluid is a clear liquid that surrounds the brain and spinal cord.  The buildup of fluid puts damaging pressure on the these structures.  Hydrocephalus is commonly treated by surgically implanting a shunt—a hollow tube—in the brain to drain the excess fluid into the abdomen.

Just before his shunt was placed.

Another result of spina bifida that many do not know is the affect that it has in the urology aspect. Because the nerves are damaged in the sacral area of the spine,  bladder and bowel damage occur. This is a variety all its own, and I personally think serves as one of the most frustrating aspects of living with spina bifida. Often times people with spina bifida have to catheterize to fully empty their bladder. I could discuss this for quite a while and still leave many questions :) This tends to be the number 1 conversation amongst us mommies. LOL.

A misconception that I wish to fix before I finish this discussion is brain damage. Often times, many people, including doctors, will categorize spina bifida as brain damage... THIS IS A MISCONCEPTION!!!! Individuals with spina bifida most often have normal intelligence. Brain damage is not directly related to spina bifida. It may at times be the result of a surgery, or an underlying condition but is not common.  I remember when Carson started growing and developing it shocked people that he was not brain-damaged, and I would frequently hear people say... "But, he seems so normal." It made me so furious but was just a lack of understanding and knowledge about the condition. Carson is very "normal".... In fact at this very moment he is demonstrating to us his close to two-ness :) and fighting his bed-time. :) Earlier he decided that he wanted to try to eat his cookies before his dinner. He's stubborn, hilarious, feisty, and adorable. He does not speak extremely well currently but can completely understand things and can spell words like B-e-d, c-a-r-t-o-o-n  and C-a-n-d-y.  He also has a dislike for any vegetable other than corn. How he knows that they are vegetables is beyond me but trust me... he knows. Vegetables= bad and a immediate dislike before even trying. Right now he wont drink milk and anything white is on the bad list... guess he knows his colors too. :) Bottom line- I could go on and on and talk about just how "normal" he is. So please do not ever think brain damage is related.

Watching cartoons and eating goldfish- how he would spend his entire day if I let him.

I need more kids to feature- Please email me at Scasmflip@hotmail.com- Right now I only have about 5 and about 26 more posts to do. :) I also would like to have a few adults who are living with spina bifida give me some info about their lives, and their side of the story. Please include a picture!!!! Thank you and goodnight!

ps. Carson did finally go to sleep :)


  1. did you get my email? Danielle Deisher....