October is an eerie month, filled with monsters, mummies, and the macabre. But while the occasional witch or skeleton might freak you out, one must concede that there are indeed more frightening things -- such as finding out your child will be born with spina bifida.
And yet, each day in the U.S., an average of eight families welcome a child with spina bifida into the world. Annually, an estimated 1,500 infants are born with spina bifida each year in the U.S (from the Centers for Disease Control and Prevention).
I was born with spina bifida in 1986. The diagnosis came as a total shock to my family, along with an entire set of secondary complications. I was also born with hydrocephalus, or “water on the brain.” During the first ten years of my life, it seemed I was in the hospital every other week with a bladder infection or shunt malfunction. I’d be lying if I said this wasn’t really scary at times.
Image: Laurita Tellado
But then, at age ten, I discovered a fantastic way to defeat my worst fears: knowledge. I vowed I would educate myself and read up on the condition that, up until that point, seemed to be taking over my life. Much like a child who imagines a ghost is in his closet, grabs a flashlight and realizes it’s only an old coat, I had come to the realization that, when you take the time to learn about something, no matter how terrifying it may seem at first, everything is less scary in the light of knowledge.
Spina bifida is one of the most commonly occurring birth defects, the March of Dimes Web site states. Just how common is it overall? PubMed Health, the Web site of the U.S. National Library of Medicine, reported in March 2011: “Myelomeningocele [the most severe form of spina bifida] may affect as many as 1 out of every 800 infants.”
When my parents and I moved from Puerto Rico to Orlando, Florida in search of better educational and healthcare opportunities for me in 1990, we found a support system away from our family and homeland in joining the Spina Bifida Association of Central Florida, and finding doctors and medical professionals who were experienced in treating people with spina bifida. My personal search for a public spokesperson for the spina bifida cause has helped me find my true purpose -- galvanizing as many people as possible to support the spina bifida community.
So, in the spirit of shedding light on a little-known condition, and in honor of October, which is Spina Bifida Awareness Month, here are some statistics about spina bifida that might spook you a bit:
- Spina bifida is more common than muscular dystrophy, multiple sclerosis, and cystic fibrosis combined.
- Latinos have the highest incidence of spina bifida out of all the ethnic groups.
- Ireland is the country with the highest incidence of spina bifida in the world.
- 64 percent of babies with spina bifida are selectively aborted after being diagnosed with spina bifida.
- Doctors recommend that every woman of childbearing age consume 400 micrograms of folic acid daily to help prevent neural tube defects like spina bifida up to 70 percent of the time. In spite of this, there are currently an estimated 166,000 people in the U.S. living with spina bifida.
- About 90 percent of people with spina bifida are also born with hydrocephalus. Many need a shunt inserted near the brain to drain the excess cerebrospinal fluid, and many require multiple shunt replacements during their lives.
- Other very common secondary conditions include bladder and bowel incontinence, as well as frequent urinary tract infections.
- After the onset of puberty, young people with spina bifida are more prone to clinical depression than most people. Researchers think this may be due in part to social isolation.
Being able to share this information with all of you today is without a doubt the most empowering and inspiring aspect of my life. I’d love nothing more than to give you that very sense of empowerment. Please link to this post on your own Web site(s) during October and feel free to add your own personal intro that will make it relevant to your blog followers. As many people as I’ve managed to rally in support of this cause, you have an advantage that I don’t: your own audience. So, please share this information with everyone you come into contact with.
Yes, to the new parent, or even to the already-grown individual, spina bifida can seem like a scary thing to deal with. But there’s a power in numbers and a strength in awareness, a strength that gives us the courage to open the closet, shine the light in the ghost’s face, and reduce it to nothing but an old coat.
Thank you for helping me conquer my biggest fear: ignorance of spina bifida.
Laura “Laurita” Tellado was born in San Juan, Puerto Rico. An only child, she was three years old when her parents decided to move the family to Orlando, Florida, where she has resided ever since. Tellado is now a writer and health blogger. She graduated from the University of Central Florida with a B.A. in Interdisciplinary Studies. She’s passionate about raising awareness about Spina Bifida, and quality of life issues, particularly through her blog, Holdin’ Out for a Hero.
She also blogs bilingually at Espresso con Leche, about cultural topics, food, and her duality as a Latina and an American—as well as her love of great cafecito! Laurita directs the Latinos in Social Media (LATISM) Central Florida chapter, and won the “Best Latina Health Blogger” Award at the LATISM 2011 Awards. In March 2013, La Prensa Orlando Newspaper honored her with the “Young Leader” title at the Mujeres Destacadas Awards.
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