The primary goal of managing spina bifida is to prevent infection and to preserve the spinal cord and nerves that are exposed outside of the body. Specific management of spina bifida will be determined by your baby's physician based on:
- your baby's gestational age, overall health, and medical history
- the extent and type of spina bifida
- your baby's tolerance for specific medications, procedures, or therapies
- expectations for the course of spina bifida
- your opinion or preference
A cesarean delivery is often performed to decrease the risk of damage to the spinal cord that may occur during a vaginal delivery. Babies born with a meningocele or a myelomeningocele usually require care in the neonatal intensive care unit (NICU) for evaluation and for surgery to close the defect. Surgery can help manage the problems, but it can not restore muscle function or sensation to a normal state. Surgical interventions may be needed for the following:
- repair and closure of the lesion
- treatment of hydrocephalus
- orthopaedic problems
Orthopaedic problems may include curvatures in the back, hip dislocations, ankle and foot deformities, and contracted muscles. Babies and children with spina bifida are also very susceptible to breaking their bones since their bones may be weaker than normal.
- bowel and bladder problems
Bowel and bladder problems may require surgery to improve function in elimination, for incontinence, constipation, or when the bladder does not empty completely.
Following surgery, you will receive instructions on caring for your baby at home. Education may include the following:
- examining the skin, especially over bony areas such as the elbows, buttocks, back of the thighs, heel, and foot areas. Recommendations may include changing your baby's position frequently to prevent skin breakdown and pressure sores.
- promoting bowel and bladder function
- ways to feed you baby and monitor your baby's nutrition
- promoting activity and mobility
- encouraging age-appropriate growth and development
Not all babies will require surgical repair of spina bifida. Non-surgical management of spina bifida may include the following:
- rehabilitation
- positioning aids (used to help the child sit, lie, or stand)
- braces and splints (used to prevent deformity, promote support or protection)
- medications
Latex Precautions
Babies with spina bifida are at high risk for developing a latex allergy due to exposure to latex from multiple medical and surgical procedures. Precautions are taken by the healthcare team to reduce the baby's exposure to products that contain latex. Your baby's healthcare providers can help you identify products that contain latex and also find products that are latex-free.
Life-long Considerations
Since spina bifida is a life-long condition that is not curable, management often focuses on preventing or minimizing deformities and maximizing the child's capabilities at home and in the community. Positive reinforcement will encourage the child to strengthen his/her self-esteem and promote as much independence as possible.
The full extent of the problem is usually not completely understood immediately after birth, but may be revealed as the child grows and develops.