Spina Bifida

What is Spina Bifida?

Spina Bifida is the most common permanently disabling birth defect in the United States . An average of 8 babies every day are born with Spina Bifida or a similar birth defect of the brain and spine. There are over 65 million women in the US who could become pregnant and each one is at risk of having a baby born with Spina Bifida. Each year, about 2,000 pregnancies are affected by these birth defects.

Spina Bifida occurs when the spine of the baby fails to close. This creates an opening, or lesion, on the spinal column. Spina Bifida happens during the first month of pregnancy when the spinal column and brain, or neural tube, is formed. This is before most women even know they are pregnant.

Myelomeningocele

There are 3 types of spina bifida. Maddux has myelomeningocele, which is the most severe type of Spina Bifida. It causes nerve damage and potentially more severe disabilities. It occurs with the protective covering of the spinal cord and the spinal nerves come through the open part of the spine.

The Challenges of Spina Bifida

The effects of Spina Bifida are different for every person. Up to 80 percent of children with the most severe form of Spina Bifida have hydrocephalus (fluid on the brain) and must have surgery to insert a “shunt” or a newer procedure which Maddux had at 5 months old known as ETV or Endoscopic Third Ventriculostomy that helps drain the fluid. Other conditions might include full or partial paralysis, learning disabilities, bladder and bowel control issues, depression, latex allergies, and social and sexual issues.

Thanks to new medical treatments and technology, most people born with Spina Bifida can expect to live a normal life span.  People with Spina Bifida have many special challenges because of their birth defect, but their condition does not define who they are. People with Spina Bifida have careers, get married, and have children just like people who do not have Spina Bifida.

– sourced from the Spina Bifida Association website

To learn more about Spina Bifida, visit: www.spinabifidaassociation.org 

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