As children with myelomeningocele survive longer and with better quality of life, many parents and professionals have noted difficulties in learning and achieving independence that do not correlate with intelligence and social abilities. For instance, although most children with myelomeningocele have intelligence in the normal range, only 34% will go to college, compared to almost half of the typical population. [Liptak: 2003] Adults with myelomeningocele are less likely to be employed than those in the general population (one third vs. 70%) or even those with other physical disabilities. [Liptak: 2003] The reasons for decreased independence are many, complicated, and sometimes seemingly contradictory. Some aspects are discussed below.
Although the IQ of children with spina bifida averages less than the general population, lower scores are generally found in children with hydrocephalus and higher spinal cord lesions, as well as in those with a history of CNS infection. [Lollar: 1995] Children with myelomeningocele have difficulty with perceptual motor skills and this tends to bring the full scale IQ down, whereas verbal intelligence scores are closer to the normal range. Children with myelomeningocele will generally do better in reading and writing classes than in math.
Even with normal intelligence, children with myelomeningocele will often have difficulties with perceptual motor skills, organization, memory, sequencing and problem solving, as well as with attention problems. Problems in these areas need to be looked for and addressed in the classroom and in the individualized education program.
Even with normal intelligence, children with myelomeningocele will score poorly on measures of self-care, such as the WeeFim (Functional Independence Measure for Children) and the PEDI (Pediatric Evaluation of Disability Inventory). The reasons for this are not well understood, but may reflect specific learning problems (such as organization, sequencing and attention deficits) as well as personal mental health and family functioning problems. One report of neuropsychological functioning in teens with myelomeningocele found deficits in fine motor coordination, information processing speed and a slower learning curve compared to the typical population. [West: 1995] More research is needed to better define the problem and find solutions to help children with myelomeningocele grow up to be better functioning adults.
Children with neural tube defects should be assessed with a full neuropsychological profile, examining intelligence, achievement, attention, etc. to best identify strengths and weaknesses and teaching methods aimed at maximizing the potential of the child. Funding for a full profile can be hard to obtain; school districts and/or the patient's insurance may be helpful but often require letters requesting the testing from the Medical Home.
Evidence-based Practice in Spina Bifida: Developing A Research Agenda.
Evidence-based Practice in Spina Bifida, 2003; Washington D.C.. / http://web.archive.org/web/20040701175406/http://www.sbaa.org/site/Doc...
Learning Among Children with Spina Bifida.
Spina Bifida Spotlight. 1995; http://www.sbaa.org
This article describes learning problems and possible interventions in children with myelomeningocele.
West M, Fjeldvik L, Rand-Hendriksen S.
Helping to solve problems associated with spina bifida: 1. Presentation of the TRS Project: organizing services for low frequency diagnostic groups and 2. Cognitive deficits often seen in young adults with spina bifida: effects in the school and work place.
Eur J Pediatr Surg. 1995;5 Suppl 1:12-5. PubMed abstract