What is spina bifida?
Spina bifida means cleft spine, which is an incomplete closure in the spinal column. The 4 types of spina bifida are
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Spina bifida occulta
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There is an opening in one or more of the vertebrae (bones) of the spinal column without damage to the spinal cord.
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Occult spinal dysraphism (OSD)
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The child has minor abnormality of the skin overlying the lower spine, such as a hairy patch, pigmented area, or small opening (sinus).
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The spinal cord below this abnormality is at high risk for injury as the child grows; evaluation of the spinal cord (eg, with a magnetic resonance imaging scan) should be performed.
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Meningocele
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The meninges, the protective covering around the spinal cord, have pushed out through the opening in the vertebrae in a sac called the meningocele. However, the spinal cord remains intact.
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This form can be repaired with little or no damage to the nerve pathways.
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Myelomeningocele
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This is the most severe form of spina bifida, in which a portion of the spinal cord itself protrudes through the back.
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In some cases, sacs are covered with skin; in others, tissue and nerves are exposed.
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Generally, people use the terms spina bifida and myelomeningocele interchangeably.
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How common is it?
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The most severe forms occur in approximately 1 out of every 1,000 births.
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Of these newborns, the majority (94%) have myelomeningocele, and the rest (6%) have meningocele and OSD.
What are some characteristics of children with spina bifida?
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Muscle weakness. Children with myelomeningocele usually have muscle weakness or paralysis below the area of the spine where the incomplete closure (or cleft) occurs. -
Sensation disturbances. Children may need wheelchairs or may be able to use crutches or walkers. Children usually do not feel sensation in the limbs or body parts below the cleft. -
Bowel and bladder problems. Children with spina bifida often do not develop normal bowel and bladder control. Many children with myelomeningocele need training to learn to manage their bowel and bladder functions. Some requirecatheterization, the insertion of a tube to permit passage of urine. -
Latex allergy. Many children with spina bifida are allergic to latex or are at risk for becoming allergic. -
Hydrocephalus. In addition, this condition may cause an accumulation of fluid in the brain, or hydrocephalus.-
It is estimated that 70% to 90% of children born with myelomeningocele have hydrocephalus.
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The higher the abnormality is on the spine, the greater the risk for hydrocephalus.
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Hydrocephalus is controlled by a surgical procedure called shunting, which relieves the fluid buildup in the brain.
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Before shunting, most children born with a myelomeningocele died shortly after birth. Now that surgery to drain spinal fluid and protect children against hydrocephalus can be performed in the first 48 hours of life, children with myelomeningocele are much more likely to live.
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Quite often, however, they must have a series of operations, including shunt revisions, throughout their childhood.
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Vision problem. Children with spina bifida may have problems with their eyes or vision.
Who is the treatment team?
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Many pediatric specialists are involved in the care of children with spina bifida. Pediatric neurosurgeons and orthopedic surgeons, neurologists, gastroenterologists, and urologists often work together in a
multispecialty center to address and coordinate the medical needs of these children. -
Many children with spina bifida benefit from
physical therapy, occupational therapy, orspeech therapy to learn adaptive skills and how to function with their peers. -
Children who are younger than 3 years may receive these therapies through
early intervention services. Early intervention is a system of services to support infants and toddlers with disabilities and their families. -
For children 3 years and older, s
pecial education and related services are available through the public school to provide the therapies necessary for school achievement.
What are some elements of a Care Plan for spina bifida?
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Care Plans for children with spina bifida often include
intermittent catheterization, a procedure in which a tube is placed in the bladder and urine is drained. -
The Care Plan may also incorporate physical or occupational therapy exercises into a daily routine.
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These plans may include the use of splints, braces, communication devices, or adapted toys to help children be more active, participate more, and have fun while they are working their bodies.
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Exposure to latex (eg, rubber-containing toys, bandages) should always be limited.
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A written plan called the Individualized Family Service Plan will be provided for children in early intervention.
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An Individualized Education Program will describe an older child’s unique needs and the services available to address them.
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These children should have at least one visit with a qualified eye specialist.
What adaptations may be needed?
Physical environment
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Many children learn self-intermittent catheterization at an early age, sometimes as young as 5 years. A private area in which this can be done will be helpful.
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A successful bladder management program can be incorporated into the school day or child care program.
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Architectural factors need to be considered when caring for a child with spina bifida. Ramps, ground-floor entrances, and wheelchair-accessible areas may be needed.
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Children with hydrocephalus as part of their spina bifida often have learning disabilities or attention deficits.
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Children with spina bifida have varying physical capabilities and limitations. Work with the child’s family and therapists on goals to improve the child’s mobility without increasing the child’s or family’s frustration with the child’s limitations.
What should be considered an emergency?
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If the child has a seizure, follow emergency guidelines for seizures.
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Notify parents/guardians of
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Fever
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Severe headache, lethargy, irritability, or new crossing of eyes
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Numbness or tingling in limbs
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Any loss of function, eg, weakness in legs
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Inability to obtain urine with catheterization
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Children with spina bifida may need extra time, supervision, or transport in case of an emergency such as a fire.
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Any critical adaptive equipment would also need to be brought in the event of an evacuation.
What types of training or policies are advised?
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Catheterization
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Care Plan specifics
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Safe transfer or transportation
What are some resources?
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Spina Bifida Association, 800/621-3141,www.sbaa.org
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National Dissemination Center for Children with Disabilities, 800/695-0285 (voice/TTY),www.nichcy.org
Source: Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide.
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The information contained in this publication should not be used as a substitute for the medical care and advice of your pediatrician. There may be variations in treatment that your pediatrician may recommend based on individual facts and circumstances.