What is Spina Bifida?
Spina Bifida is the most common permanently disabling birth defect in the United States. Spina Bifida literally means “split spine.” Spina Bifida happens when a baby is in the womb and the spinal column does not close all of the way. Every day, about eight babies born in the United States have Spina Bifida or a similar birth defect of the brain and spine.
Spina bifida is part of a group of birth defects called neural tube defects. The neural tube is the embryonic structure that eventually develops into the baby’s brain and spinal cord and the tissues that enclose them. Normally, the neural tube forms early in the pregnancy and closes by the 28th day after conception. In babies with spina bifida, a portion of the neural tube fails to develop or close properly, causing defects in the spinal cord and in the bones of the backbone. Spina bifida occurs in various forms of severity.
I love when medical professionals define a condition, disease, defect, and even the common cold. Everyone weighs in and gives their definition to see who comes up with the longest, the most complicated, or even the most opaque. All I would love to do is scream, “DO NOT DEFINE US, BECAUSE WE WILL SURPASS YOUR DEFINITION AND RISE TO THE TOP!”
I hate, hate, hate being put in a box. I don’t like to know where I start or finish because of a definition. I will tell you my personal definition of Spina Bifida. I am not saying the above definitions by the Spina Bifida Association or the Mayo Clinic are wrong, because they are not by any means. However, I am here to tell my story so I’ll start by explaining MY Spina Bifida. (For now on Spina Bifida will be abbreviated to SB.)
My SB is interesting. I wasn’t born with my spine exposed, but I did have the significant markings. I can only assume an X-ray was done to confirm the doctor’s diagnosis before he told my parents. It didn’t seem to affect me in the way many doctors thought it would. Unlike most kids with SB, I didn’t have my first surgery until I was 5 years old. I was a normal baby. I kicked my legs, I crawled, I walked, and I was potty trained. Everything seemed okay until the age of 5. I’m not sure what lead up to my parents requesting to see a neurosurgeon but I think it was because I started losing bladder function and my reflexes were almost nonexistent. I remember I was in 1st grade and I just couldn’t hold my bladder like I used to and it was not a comfortable feeling at that age. What was wrong with me???
I remember my surgery was in the summer of 1986 right before I went to the 2nd grade and changed from a private school to a public school. I do remember going to my Godmother’s house before the surgery. I think both my Godmother, Chris, and my mom had a little too much to drink and decided to cut my hair for my surgery. At that time I had long blond hair. Well these crazy women put my hair in a braid and started cutting. Well obviously since it was braided, it wasn’t coming out straight across. So they kept cutting and cutting till it was and my hair became shorter than I have ever worn it at that time. I can remember sitting on the kitchen table and wondering when will they ever be done. This is truly why I think my mom and my Godmother, both women I am named after, were drinking. And I hope it wasn’t the cheap stuff because I know they were very worried about the outcome of this surgery that was looming.
Like I said, many of the details are blurry or lost. I don’t know exactly what the surgery entailed but when it came down to it, they fixed my spinal cord and some other things, so I could continue to have full use of my legs but in return I lost control of my bladder. I have what the medical community calls a neurogenic bladder and I have to self-catherize multiple times a day, every day. It sounds horrible but I can walk and I am grateful for that gift. Most people when they hear the word catheter, they think of a Foley, the catheter that is placed in you when you are in the hospital and are not allowed to get up and walk around or are unable to. What I do is nothing like that. It is a very small catheter and I even carry them around discreetly and no one who doesn’t know me would ever be able to tell that is what I have to do and carry on me at all times. And for years I hid this from almost everyone! I am good at it……until……….
Shuffle on my friends!!!!!
written on thee 20th November 2013