Living with Spina Bifida

Spina bifida is a multifaceted condition characterized with diverse problems that have effect on the mind, the body, and the spirit.  Some of the challenges that potentially faces those with Spina Bifida are: 

Continence management: Because of nerve damage, individuals with myelomeningocele often have problems emptying the bladder completely. This can lead to urinary tract infections and kidney damage. A technique called intermittent catheterization, in which the parent or child inserts a plastic tube into the bladder several times a day, is often helpful. Children with Spina Bifida should have regular care by a urologist (a doctor who specializes in urinary tract problems) to help prevent urinary tract problems.

HydrocephalusAbout 70 to 90 percent of children with myelomeningocele develop hydrocephalus, a build-up of fluid in and around the brain. Cerebrospinal fluid cushions and protects the brain and spinal cord. When the fluid is unable to circulate normally, it collects in and around the brain, causing the head to be enlarged. Those who develop progressive Hydrocephalus need surgery. Without treatment, Hydrocephalus can cause brain damage and mental retardation. 

Chiari II malformationNearly all children with myelomeningocele have an abnormal change in the position of the brain. The lower part of the brain is located farther down than normal and is partly displaced into the upper part of the spinal canal. This can block the flow of cerebrospinal fluid and contribute to Hydrocephalus. In most cases, affected children have no other symptoms. But a small number develop serious problems, such as breathing and swallowing difficulties and upper body weakness. In these cases, doctors may recommend surgery to relieve pressure on the brain.

Pressure soresPressure sores occur when the skin is pressed between the bones of the skeleton and a hard surface which restricts the normal flow of blood, oxygen, and nutrients to the area. Subsequently the skin cells die, forming a pressure sore. This condition can be a problem to persons with spina bifida as they may also have a reduced circulation in the area due to their lack of movement. Usually the brain sends a message to the body to change position so that the cells will once again receive a proper blood supply. A person with Spina Bifida has areas of skin which do not have any feeling and often have partial or complete paralysis, and so does not receive these messages. If the pressure continues the blood supply is cut off, causing pressure sores.

Latex allergies: Many children with myelomeningocele are allergic to latex (natural rubber), possibly due to repeated exposures during surgeries and medical procedures. Symptoms include watery eyes, wheezing, hives, rash and even life-threatening breathing problems. Doctors should consider using nonlatex gloves and equipment during procedures on individuals with Spina Bifida. Affected individuals and their families should avoid latex items often found in the home and community, such as most baby bottle nipples, pacifiers and balloons.

MobilitySome children with Spina Bifida have no movement in the lower trunk or legs, while others have virtually normal movement. Most children will be somewhere in between. Some children will walk independently, perhaps with small splints on their legs. They may have poor balance or poor endurance for long distances. Others will walk with splints (or more supportive walking gear) and a walking frame or crutches. They will normally use a wheelchair as well. Others will use a wheelchair most or all of the time.

At least 80 percent of children with myelomeningocele have normal intelligence. However, some may face learning problems. Some individuals with myelomeningocele have additional physical and psychological problems, such as obesity, digestive tract disorders, depression and sexual issues. With treatment, children with Spina Bifida usually can become active individuals. Most live normal life and are successfully integrated in the social and professional spheres. 

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