What is Spina Bifida? Spina bifida is a birth defect that affects the spine and spinal cord. It happens when the spinal column does not close all the way during the first months of pregnancy. There are three main types of spina bifida:  Myelomeningocele - the most severe form where the spinal canal is open along several vertebrae Meningocele - the protective membranes around the spinal cord push out through an opening in the vertebrae Spina bifida occulta - a small gap in the spine, but no opening or sac on the back  Doctors aren't sure exactly what causes spina bifida. They think genes and the environment play a role. Getting enough folic acid before and during early pregnancy can help prevent spina bifida. Living with Spina Bifida. Many people with spina bifida live full, active lives. Mobility aids like braces, crutches, or wheelchairs can help with walking. Physical therapy builds strength and coordination. Bladder and bowel problems are common in people with spina bifida. Catheters can help empty the bladder. Fiber in the diet and regular toilet routines promote bowel control. Some people with spina bifida have hydrocephalus, a buildup of fluid in the brain. A hollow tube called a shunt drains the extra fluid. This prevents brain damage. Shunts need lifelong monitoring and sometimes replacement. Staying Healthy. People with spina bifida need regular checkups to stay healthy. This includes seeing specialists for the brain, bones, bladder, and more. Preventing latex allergy is important. Many medical items...

Spina bifida: Support, management, emotional care, and research for future treatments and a cure.

Resilience in the Face of Spina Bifida

What is Spina Bifida? Spina bifida is a birth defect that affects the spine and spinal cord. It happens when the spinal column does not close all the way during the first months of pregnancy. (CDC) There are three main types of spina bifida: spina bifida occulta, meningocele, and myelomeningocele. Myelomeningocele is the most severe form. Spina bifida can cause physical and intellectual disabilities that range from mild to severe. The severity depends on the size and location of the opening in the spine and whether part of the spinal cord and nerves are affected. How Does Spina Bifida Impact a Child's Development? Most children with spina bifida have some level of difficulty with movement, sensation, and bodily functions. They may need assistive devices like braces, crutches, or wheelchairs to help them move around. (March of Dimes) Spina bifida can also cause bowel and bladder problems. Children may need help with going to the bathroom. Some may need a catheter to empty their bladder. Learning problems are common in children with spina bifida, especially if they have hydrocephalus (extra fluid on the brain). They may have trouble with:  Paying attention Learning and remembering new information Understanding how things relate to each other Solving problems  Why is Early Intervention Important? Early intervention services can help babies and toddlers with spina bifida to develop and learn important skills. These services can include:  Physical therapy to help with movement and strength Occupational therapy to help with daily living skills Speech...

Spina bifida, a birth defect affecting the spine, can cause disabilities. Early intervention and support groups are essential.

Understanding Spina Bifida and the Benefits of Early Intervention

Spina Bifida is one of the most common birth defects, occurring in 1 out of 2,500 babies. Also termed a “cleft spine” or “open spine,” it affects the lower back and in more severe cases, the spinal cord. Carla Lohr was born with Spina Bifida Myelomeningocele and grew up wearing leg braces and struggling to fit in. She now finds herself in the unique position of being a parent to a son with Spina Bifida Occulta, a less severe form.  Lohr writes in the Huffington Post that she initially thought that her experience having lived with Spina Bifida would make her son’s diagnosis less of a challenge. She soon discovered that “being the patient is so much different—and easier—than it is to be the parent.”  Having already experienced living with Spina Bifida, Lohr understands the frustration of having people tell her what she cannot do. It is something that plays tug-of-war with her head and her heart as a parent, when she worries that her son will get hurt because of the weakness in his leg muscles and the fact that he is missing one vertebra and there are holes in the majority of the others. When people told Lohr not to do something because they worried for her safety, she felt it was unfair that they were trying to set limits for her. When it came to her son going on a hunting trip with his dad, brother and uncle, Lohr had a different reaction. She was...

Carla Lohr, with Spina Bifida, navigates parenting a child with the condition, learning to balance protection and empowering her son.

Spina Bifida: From Patient to Parent

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Special Needs
Articles

Resilience in the Face of Spina Bifida

Understanding Spina Bifida and the Benefits of Early Intervention

Spina Bifida: From Patient to Parent

Find Providers Near You

Special Needs Articles

Resilience in the Face of Spina Bifida

Understanding Spina Bifida and the Benefits of Early Intervention

Spina Bifida: From Patient to Parent

Find Providers Near You

Special Needs
Articles