Spina Bifida

Florida's Voice

Spina bifida is a major birth defect of a baby's brain, spinal cord, and their protective covering. It happens when the baby’s spine does not close all the way during the first month of pregnancy. When this happens, the spinal cord and its protective covering may protrude through an opening in the baby's spine. Although the spinal opening can be repaired surgically, the nerve damage is permanent.

Spina bifida is one of the most common, permanently disabling birth defects in the United States. It is preventable; if a woman has enough folic acid in her body before and during pregnancy, her baby is less likely to have spina bifida or other defects of the brain or spine. Women need to take folic acid every day, starting before they get pregnant.

Spina bifida affects all people differently. Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries. Some of the problems that a person born with spina bifida might face include:

  • Not being able to move lower parts of the body (Some might need to use crutches, braces, or wheelchairs to get around.)
  • Loss of bowel and bladder control (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)
  • Fluid building up and putting pressure on the brain (hydrocephalus), which can be fixed with an operation.
  • Learning disabilities
  • Allergy to latex (a created material found in some rubber-type products such as balloons or hospital gloves)

Every woman who could possibly get pregnant should take 400 micrograms (400 μg or 0.4 mg) of folic acid daily in a vitamin or in foods that have been enriched with folic acid.

There is hope; there are those who listen and understand; and there are choices for those affected by disabilities. FVDD can help by offering research, link to news/updates page resources, link to resources page and support so that families and individuals can make informed choices. We advocate for dignity and choice for people with developmental disabilities. You are not alone. Contact Us for information or guidance.

“Know the person, not the disability; in fact look past the disability and you will see a person….”

Maricella’s Story

  • Default user icon

    Maricella was a healthy 22 year-old when she discovered she was pregnant with her first child. While she was excited about becoming a mom, she was nervous because she hadn’t realized she was pregnant until almost the third month, and she didn’t feel prepared.

    Maricella was nervous at her first doctor’s appointment. With her mom and sister by her side, she was excited to start caring for the little baby growing inside.  The doctor performed routine tests in his office, and Maricella happily made note of her next doctor’s appointment.

    A troubling call came only one day later. The doctor’s office wanted her to come in for amniocentesis. The nurse told her that high levels of alpha-fetoproteins were found in her test results, which could mean a neural tube birth defect. Had she been taking prenatal vitamins and folic acid asked the nurse over the phone? Maricella knew this could pose a problem – she had not started taking her vitamins until after finding out she was pregnant, and that was almost four months into her pregnancy.

    When Maricella’s labor came, it was not an easy one.  And little Joel was born with spina bifida, needing surgery to relieve fluid around his brain. Maricella has been tormented with guilt as she questions whether she is to blame for Joel’s condition.