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LIFE WITH SPINA BIFIDA

Spina Bifida is the most common, permanently disabling birth defect compatible with life in the United States. Typically occurring in the first month of pregnancy, Spina Bifida happens when the spine, or neural tube, does not completely close. When the neural tube doesn't close, the backbone protecting the spinal cord doesn't form as it should. This often results in damage to the spinal cord and nerves.

NO ONE KNOWS FOR SURE WHAT CAUSES SPINA BIFIDA

While there is no single known cause, scientists and doctors believe Spina Bifida (SB) occurs from a complex mix of genetic and environmental factors present very early in the pregnancy, by the fourth week. A Spina Bifida diagnosis might cause a parent to ask, "how did this happen?" What's important for parents to know is that neural tube defects like Spina Bifida are not entirely understood, no one knows for certain what causes them, and Spina Bifida is not caused by a parent's actions.

EVERY PERSON IS UNIQUE INCLUDING THOSE WITH SPINA BIFIDA

Every day there are approximately eight babies born in the US with SB or a like birth defect. Approximately 166,000 individuals in the United States have Spina Bifida. Every single person with SB is affected differently, and it is impossible to predict a child’s outcome before or at birth. Outcomes have improved over the last 50 years due to medical advancements. In addition, cultural attitudes toward individuals with disabilities continue to grow and progress. The result has been greater awareness, increasing support and improving services. Many with SB attain advanced education and have careers and families of their own. They become doctors, teachers, artists, athletes, and parents. While some individuals with SB have significant disabilities, others are less affected. However, Spina Bifida is only one part of their lives and does not define them. With appropriate supports in place – medical, emotional, educational – children born with Spina Bifida do reach their full potential.

A SPINA BIFIDA DIAGNOSIS

When parents find out they are going to have a child with Spina Bifida, it can be overwhelming. It is very important for parents to take an active role in managing their child’s care. Parents need to know about Spina Bifida and understand the health issues and treatment options to make the best possible choices for the health and happiness of their child.

THE ROAD AHEAD: Meeting the complex needs of a person affected by Spina Bifida can be challenging at times. Finding resources,and planning for the future can help.