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Living with Spina Bifida

Spina Bifida is the most common occuring disability at birth in America, impacting affecting 1,500 to 2,000 of the more than 4 million babies born in the country each year. However, people like singer John Cougar Mellencamp, wheelchair athlete Jean Driscoll, and I "THE Disabilities Coach," Monica J. Foster, who have the disability lead normal lives. It is caused by a neural tube defect that prevents the spinal column from completely closing. This lack of knitting together of the spinal column occurs during the first few weeks of pregnancy when many woman don't even realize they are pregnant.

Every case of Spina Bifida is different. For example, singer John Cougar Mellencamp was born with the least disabling form, spina bifida occulta. Some people are hardly affected by the disability. Others it affects in more significant degrees depending on where the opening happens on the spinal column. In some more signficant cases of spina bifida, babies can develop hydrocephalus. Hydrocephalus is when there is excess spinal and brain fluid production that presses on the brain. Hydrocephalus, if not prevented or corrected early can cause mild to significant intellectual disabilities.

When someone has hydrocephalus they will more than likely need a shunt. When I was born in the early 1970s, the doctors inserted a shunt behind my ear A shunt is a device that shifts excess fluid off the brain and out of the body. The shunt may remain for a lifetime, but I eventually outgrew mine and it was removed. It depends on the person. Shunts are not typically painful, but can be a necessity to preserve brain function and to prevent death

People with spina bifida, particularly in more significant forms, may have paralysis (full or partial,) bladder and bowel control issues, latex allergies, sexual or sterility issues, and sometimes learning disabilities. However, there are devices, therapies and protocols to diminish the impact of daily function impairments.

I have a form of spina bifida called myelomeningocele. My spinal column did not knit together around the lower back at the third and fourth lumbar discs. As a result, I lack control of my legs and use a wheelchair full-time. In my early years I used leg braces and crutches before I sustained a broken arm in a car wreck when I was 20 years old. Afterward, I decided that part-time use of the wheelchair would shift to full-time to make my life easier. It was entirely a personal decision in college that worked for me.

Some people with spina bifida are able to walk. They sometimes use canes, crutches, or walkers. I used a walker for the first time when I was three years old and graduated to crutches. Other times, they might need to use a wheelchair or both. In most cases, people with spina bifida have full use of their upper body and are very independent, becoming whatever they want to be in life based on the support they have around them to develop to their fullest potential.

People with spina bifida live very full lives. I know many people with the disability in various forms beyond myself and we all live very rich, busy lives going to school, working, owning our own businesses, dating, being married and having children. Having the disability is not a nightmare. It is all in how you handle your existence in general. Attitude means a lot to your success living with the disability.

It is hard to pinpoint one exact cause for spina bifida. A myriad of factors play a role. No one knows exactly what disrupts complete closure of the neural tube, causing a malformation to develop. Scientists suspect genetic, nutritional, and environmental factors play a role. I in particular was exposed via genetics to Agent Orange, the pesticide used during Vietnam.

My biological father was a Marine serving in the war and was exposed. Many specialists believe that is the cause of my spina bifida. Research studies indicate that insufficient intake of folic acid—a common B vitamin—in the mother’s diet is a key factor in causing spina bifida and other neural tube development impairments.

Prenatal vitamins typically contain folic acid as well as other vitamins. It is also important to get lots of protein and leafy green vegetabls such as spinach into a woman's diet if she is intending on becoming pregnant.

In addition to children with spina bifida being able to know each other and grow together, it is also important to help the child develop around people without disabilities to effectively live in a world where the majority of people don't have a disability. My parents stressed that I have the best of both the disability and non-disability world to lead a well-rounded existence and appreciation of who I am as a person. Of that I'm most grateful and encourage the same for youth and families impacted by spina bifida with whom I work as a life coach. I also encourage families whose child may have learning difficulties to presume intelligence, be talkative around the child to stimulate language and social skills.

Support and education is key. Do the research, seek support. A full life awaits.



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