What It Means To Live With Spina Bifida
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Health and Wellness

Spina Bifida And Hydrocephalus Are A Huge Part Of My Life, But They Do Not Define Who I Am

September is National Hydrocephalus Awareness Month and October is National Spina Bifida Awareness Month...but no one knows what they actually are.

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Spina Bifida And Hydrocephalus Are A Huge Part Of My Life, But They Do Not Define Who I Am

21 years ago, on September 17, 1998, I was born. I was not your average "healthy" baby, though. Born one month premature, I was born with a condition known as spina bifida. According to the National Institute of Neurological Disorders and Stroke, Spina Bifida is the "incomplete development of the brain, spinal cord, and the protective covering around the brain and spinal cord." It affects about 2,000 babies out of the 4 million babies born each year.

I guess you can call me a unique baby.

The exact cause of Spina Bifida is unknown, but doctors believe that genetic, nutritional and environmental factors all play a role in the incomplete closure of neural tubes. The severity or degree of disability varies from person to person — they could have little to no complications, or they could be completely paralyzed. I fall somewhere in the middle of that disability spectrum. I cannot walk on my own without the assistance of crutches, orthotic braces and, occasionally, a wheelchair. Some spina bifida patients also experience bowel/bladder incontinence, often needing the assistance of medication and catheters.

Depending on the severity of the disability at birth, the infant may undergo many procedures before being cleared to go home. To give you a reference of how long a newborn stays in the hospital, I will tell you that I was held for nearly two months. Typically, spina bifida patients will undergo surgery to place/fix the spinal cord that is protruding from the back. This is done immediately after birth to avoid infection.

Because Spina Bifida is the incomplete development of the spine and brain, those living with the condition are not able to drain excess fluid and toxins on their own, ultimately suffering from Hydrocephalus.

This condition is treated by placing a shunt in the brain. Because a shunt is just a mechanical means of fixing a biological problem, it is not a long term solution. Those with shunts will undergo MANY procedures throughout their life to maintain the functionality of the device. Speaking from personal experience, having a shunt malfunction is probably one of the worst things in the world. Severe migraines, extreme dizziness, poor appetite, and low energy are just some of the symptoms one might experience during this medical emergency. This is why it is extremely important for spina bifida patients to regularly see a neurologist or a primary care doctor who knows at least the basics of how shunts work. Seriously, don't let a doctor diagnose a spina bifida patient with a tension headache or dehydration and then send you home with ineffective meds.

We know our bodies better than anyone.

Aside from the medical complications associated with spina bifida, children and adults can live normal and successful lives in their homes, school, and workplace with the right support.

Unfortunately, we live in a world where having a disability of any kind, especially a physical one like spina bifida, can result in uncalled-for bullying and being outcasted by peers or colleagues.

I have been blessed beyond all measures of having a supportive family and incredible friends in college. I didn't always have that experience, though. But what doesn't kill you makes you stronger, right? It's also important in this day to educate those around us about conditions like spina bifida and hydrocephalus. As I am getting older and finding that support that I had longed for in elementary, middle and high school, I have found my voice for educating those around me and the ability to love and accept myself in spite of my disability.

THIS is who I am: I am 21 years old who loves people unconditionally and learning to love myself with the same regard. I am a junior in college, with hopes to attend graduate school and become an occupational therapist. I play piano, love swimming, love to read, hang out with friends and binge-watch shows on Netflix. I live with spina bifida and hydrocephalus, but those things do not define who I am.

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