What is Spina Bifida?

 

Spina bifida

 

(Latin:”open spine” or “split spine”) is a developmental birth defect caused by the incomplete closing of the embryonic neural tube. Some vertebrae underlying the spinal cord are not fully formed and remain unfused and open. If the opening is large enough, this allows a portion of the spinal cord to protrude through the opening in the bones. There may or may not be a fluid-filled sac surrounding the spinal cord. Other neural tube defects include anencephaly, a condition in which the portion of the neural tube which will become the cerebrum does not close, and encephalocele, which results when other parts of the brain remain unfused.

 

Spina bifida malformations fall into four categories: spina bifida occulta, spina bifida cystica (myelomeningocele), meningocele and lipomeningocele. The most common location of the malformations is the lumbar and sacral areas . Myelomeningocele is the most significant form and it is this that leads to disability in most affected individuals. The terms spina bifida and myelomeningocele are usually used interchangeably.

Spina bifida can be surgically closed after birth, but this does not restore normal function to the affected part of the spinal cord. Intrauterine surgery for spina bifida has also been performed and the safety and efficacy of this procedure is currently being investigated. The incidence of spina bifida can be decreased by up to 75% when daily folic acid supplements are taken prior to conception.

Myelomeningocele
  
 
 Myelomeningocele in the lumbar area.
(1) External sac with cerebrospinal fluid.
(2) Spinal cord wedged between the vertebrae.

 

In this, a serious and common form, the unfused portion of the spinal column allows the spinal cord to protrude through an opening. The meningeal membranes that cover the spinal cord form a sac enclosing the spinal elements. Spina bifida with myeloschisis is the most severe form of spina bifida cystica. In this defect, the involved area is represented by a flattened, plate-like mass of nervous tissue with no overlying membrane. The exposure of these nerves and tissues make the baby more prone to life-threatening infections.

The protruded portion of the spinal cord and the nerves which originate at that level of the cord are damaged or not properly developed. As a result, there is usually some degree of paralysis and loss of sensation below the level of the spinal cord defect. Thus, the higher the level of the defect the more severe the associated nerve dysfunction and resultant paralysis. People may have ambulatory problems, loss of sensation, deformities of the hips, knees or feet and loss of muscle tone. Depending on the location of the lesion, intense pain may occur originating in the lower back, and continuing down the leg to the back of the knee.

Many individuals with spina bifida will have an associated abnormality of the cerebellum, called the Arnold Chiari II malformation. In affected individuals the back portion of the brain is displaced from the back of the skull down into the upper neck. In approximately 90 percent of the people with myelomeningocele, hydrocephalus will also occur because the displaced cerebellum interferes with the normal flow of cerebrospinal fluid.

The myelomeningocele (or perhaps the scarring due to surgery) tethers the spinal cord. In some individuals this causes significant traction on the spinal cord and can lead to a worsening of the paralysis, scoliosis, back pain, or worsening bowel and/or bladder function.

People of note born with spina bifida:

Jade Calegory, actor, best known for his role as the disabled main character in Mac and Me.

Lucy Coleman, from the children’s TV show Signing Time!

Andy W. Clift, British animator and film maker

James Connelly, US Paralympian, 2006 Bronze Medal Winner, 2010 Gold Medal Winner; Sledge hockey

Jean Driscoll, Paralympian and eight-time Boston Marathon winner

Guro Fjellanger, Norwegian politician

Aaron Fotheringham, American extreme wheelchair athlete

Tanni Grey-Thompson, British Paralympian

Lawrence Gwozdz, US saxophonist

Blaine Harrison, lead singer, keyboards, rhythm guitarist and former drummer of the British band Mystery Jets

Robert Hensel, Guinness record holder

John P. Jeanneret, US investment manager

Rene Kirby, US actor in films such as Shallow Hal and Stuck on You

Matt Lloyd, British Paralympian

John Mellencamp, US rock and roll musician

Karin Muraszko, chair of Department of Neurosurgery at University of Michigan, first female appointed to such a position in the US

David Proud, British actor

Jesse Richards, American artist and filmmaker, founder of Remodernist film

George Schappell, conjoined twin and country music musician

Bobby Steele, US punk rock guitarist and songwriter

Jeffrey Tate, British conductor

Dale Tryon, Baroness Tryon, Australian socialite and friend of Prince Charles

Hank Williams, US country music singer

Lucinda Williams, US country music singer/songwriter

Miller Williams, US poet

Justin Yoder, US soap box racer

Adam Hall, New Zealand Paralympian, 2010 Gold Medal Winner

Chandre Oram, an Indian man famous for his tail

Jack Kramme, Australian peace activist.

Jack Pryor, Professor of Developmental Neurology, University of Warwick

Quinn James McLaughlin (Adventurer, Author, Handicap Mountain Bicycle Designer)

Samuel Armas (an early recipient of open fetal surgery)

That is the more clinical explanation. Here’s the personal:

I have limited mobility. I have complete paralysis from the knees down and have absolutely no sensation or feeling from there. When I was younger, I got around with arm crutches and wore leg braces. But in these past few years, I mainly rely on the use of a wheelchair.

I do the same things that you can do. Only in a different manner. Don’t EVER assume with a person with Spina Bifida. Or any kind of physical limitations for that matter! Its the worst thing you can do.

This does not however, effect my mind. Just my legs. I am NOT contagious. This comes from birth, and its not something you catch either. I can thrive in today’s society. Whereas several decades earlier, people who had Spina Bifida were sent to mental hospitals and asylums and discarded from the human race. Its really disgusting to think about it.

Clearly I have something to offer. I have made many friends along the way that don’t even bother to think about the condition that I may or may not be in. They consider the wheelchair as a part of me and my body. I surprise people on a daily basis of what I can do. Mainly because of ignorance. But that is not saying its a bad thing. People in general, just don’t know.

ASK QUESTIONS!!!! If you don’t know for sure if I can do something and you don’t want to be oppressive or offensive, then ask me. And NEVER EVER EVER start your question by saying “I don’t mean to be rude, but…”, or “I’m not trying to mean,” or even worse, “Don’t get mad, but…”. JUST ASK!

But with that said, you have an interest in me in some fashion or way. Otherwise you would not be reading this. Stay tuned, and I hope this has answered all of your questions that you were too afraid to ask. So quit being afraid.

Comments
  1. Jamie L. Burnett says:

    Wow! I knew what spina bifida was, but I never knew John Mellencamp had it. I learn something every day. 🙂 You know my opinions of you and how strong and awesome you are, already.

  2. Julie says:

    Wow. I don’t recall seeing the word “brave” but clearly you are. Quite admirable. I do wonder about labels, not directly relating to you, but in general. I never would have known of your physical condition had you not made it known. Same with some blogs I read whose authors have a preference for partners of the same sex. I don’t get it, why does that become so much of who you are? I mean, I understand it is who you are, but I don’t understand waving the flag I guess. Again, this isn’t directed at you. I just get diarrhea of the mind sometimes.

    • Dambreaker says:

      In this case, this page was created to be informative. It is to be the explanation as to who I am or what I do, because any more it is not enough of an answer say that I am in a wheelchair. So it answers the question, and more. Plus education is key. Almost every day I am asked about why am I in a wheelchair, from the very young to the very old. If educating the public means doing it with the flag, then I am all for educating the masses so that they know, and can have some what of an understanding when they read here of what I do and what I say.

      • Julie says:

        Perhaps we are on the same page and I am not relating myself clearly. Your wheelchair has nothing to do with who you are really. Your mind works (quite well I might add) independently from your physical self. And yes, this page was informative, and yes I was curious what kind of disability you had and how severe it might be, but only from some of the references posted.

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