Living With Spina Bifida #53

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On July 16, 1982 my parents’ lives FB_IMG_1539982454041changed in many ways. On this day they became the proud parents of a baby girl, their first child. I was that child. I was born with Spina Bifida. Neither of my parents had much knowledge about exactly what Spina Bifida is. My mother had read a small amount of information on Spina Bifida while she was in college, but it wasn’t enough to prepare her to be the mother of a daughter born with Spina Bifida. During the first week of my life while I was in the neonatal intensive care unit (NICU) my parents were given a myriad of information about Spina Bifida, I’m sure it was extremely overwhelming. They didn’t know exactly what the future would hold, but they loved me and were willing to do whatever they needed to for me. I can’t remember a time in my life when my parents weren’t there for me, through every surgery and illness when I was a little girl until my teen years, they were always right beside me. Since my father died I have a very special aunt who has been right alongside my mother and I during my last few surgeries, and of course Daddy is always there in spirit. I have always felt blessed beyond measure, because God chose to give me to my mother and father, because I have always felt loved, sometimes a bit over loved.

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According to the Spina Bifida Association, Spina Bifida means split spine. It is a neural tube defect (NTD) that develops during the first month of pregnancy when the spinal column doesn’t completely close. According to the Arkansas Spinal Cord Commission there are three types of Spina Bifida; two are readily diagnosed at birth. I was born with one of them, myelomeningocele which is the most common. This type happens when a cyst-like sac protrudes from the back containing spinal fluid and covering tissue and nerves of the spinal cord. The cord and nerves are likely to be damaged or not properly developed. The second type is also easily detected at birth it is meningocele, it is the least common. The sac contains fluid and tissue that covers the cord and the cord is not in the sac, but often is not damaged. The last type is spina bifida occulta. This type is not easily detected at birth because at birth no spinal column defect is visible. This type may not be recognized until much later in life. An x-ray will usually identify a thinning or mild distortion of a part of the backbone.

Adobe_Post_20181019_170138At birth I needed treatment which involved surgery. Surgical repair of the lesion (sac) was necessary. I actually had separate surgeries, one to repair the lesion in my back and the other was for the installation of a shunt. The shunt had to be placed at the base of my skull to control hydrocephalus. According to the Spina Bifida Association eighty percent of people with Spina Bifida have hydrocephalus. Hydrocephalus is an excessive accumulation of cerebral spinal fluid in the head. This fluid affects the formation of the brain and may lead to mental retardation thus causing a child to have to have a shunt inserted to drain the fluid from the brain into another part of the body. Let me explain what a shunt is. A shunt is a very flexible plastic tube used to drain the excessive fluid from the brain to a different part of the body where the fluid can easily drain into the urine. The shunt is inserted for the lifetime of a person. Sometimes there must be revisions made to the shunt.

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I have some physical limitations and have had several Spina Bifida related surgeries. People with Spina Bifida must learn to get around on their own as I did. In order to allow that happen, some people born with Spina Bifida will need the aid of braces, wheelchairs or crutches. I wear low leg braces. I did not begin to walk until I was seventeen months old. Today at thirty-six years old I am able to walk but I have an unusual gait. Spina Bifida affects the whole family and the problems that come with it can be challenging at times. Parents must take an active role in caring for the child. They must understand all the options for treatment and make the best choices for care. Living with Spina Bifida is not the same for each person who has it. It does mean for many crutches, wheelchairs and braces. Living with Spina Bifida for some means social rejection, psychological problems, physical problems and even academic problems.Adobe_Post_20181019_171245

According to the American Pregnancy Association the effects of Spina Bifida are different for every person. Persons with Spina Bifida may have other conditions. The other conditions may include poor bladder and bowel control, depression, latex allergy, partial paralysis and social issues. All of these conditions could range from mild to severe.

The Spina Bifida Association states that obesity is a great concern for individuals with Spina Bifida. These individuals may not be able to walk and if they can it is with limitations. Doctors are now saying that Spina Bifida can best be prevented by taking four hundred micrograms of folic acid everyday during pregnancy. According to the Center for Disease Control (CDC) the affects of Spina Bifida can range from mild to severe. Some people have little or no noticeable disability. Others are limited in the way they can move and/or function. Even so with the right care most people affected by Spina Bifida will be able to grow up to lead full and productive lives. I am living proof of that.10C26467-60D3-4D82-B587-EC66345BB3B9