Skip to main content Accessibility help
×
Hostname: page-component-78c5997874-m6dg7 Total loading time: 0 Render date: 2024-11-03T00:00:06.891Z Has data issue: false hasContentIssue false

7a - Infants and children with spina bifida

from Section II - Disorders

Published online by Cambridge University Press:  07 May 2010

Jacobus Donders
Affiliation:
Mary Free Bed Rehabilitation Hospital
Scott J. Hunter
Affiliation:
University of Chicago
Get access

Summary

Introduction

Spina bifida myelomeningocele (SB) is the most common severely disabling birth defect in North America. However, knowledge of this condition is limited, especially regarding the impact of SB in infancy and early childhood. This chapter discusses the neuropsychological profile present in infants and children with SB, including findings from the first longitudinal study to our knowledge with a cohort of children with SB who were recruited in infancy and followed to their present age of 8½ years. Research conducted as part of a larger multidisciplinary research program, directed toward characterizing SB and the biological and environmental factors that account for variability in outcomes, will also be reviewed.

In this chapter, we identify the nature of SB relevant to development and cognitive functioning, followed by a summary of the neurobehavioral profile including the core deficits and the subsequent cognitive and functional difficulties. We then discuss the potential psychosocial and behavioral difficulties present in this population. The important role of the environment, especially parenting, as a potential moderator is also highlighted. Finally developmental assessment and intervention with this population are discussed with suggestions for future research.

Spina bifida myelomeningocele

SB is a neural tube defect that is associated with significant spine and brain malformations. The current prevalence level in North America is 0.3–0.5 per 1000 births (post dietary fortification data, Williams et al. [1]). The primary CNS insult in SB affects both ends of the neural tube.

Type
Chapter
Information
Publisher: Cambridge University Press
Print publication year: 2010

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Williams, LJ, Rasmussen, SA, Flores, A, et al. Decline in the prevalence of spina bifida and anencephaly by race/ethnicity: 1995–2002. Pediatrics 2005;116(3):580–6.CrossRefGoogle Scholar
Charney, EB. Neural tube defects: spina bifida and myelomeningocele. In Batshaw, ML, Perret, YM, eds. Children with Disabilities: A Medical Primer. Baltimore: Brookes, 1992: 471–88.Google Scholar
Fletcher, JM, Northrup, H, Landry, SH, et al. Spina bifida: genes, brain, and development. Int Rev Res Ment Retard 2004;29:63–117.CrossRefGoogle Scholar
Volick, KA, Blanton, SH, Tyerman, GH, et al. Methylenetetrahydrofolate reductase and spina bifida: evaluation of level of defect and maternal genotypic risk in Hispanics. Am J Med Genet 2000;95:21–7.Google Scholar
Fletcher, JM, Copeland, K, Frederick, JA, et al. Spinal lesion level in spina bifida: A source of neural and cognitive heterogeneity. J Neurosurg 2005;102(Suppl. 3):268–79.Google ScholarPubMed
Juranek, J, Fletcher, JM, Hasan, KM, et al. Neocortical reorganization in spina bifida. NeuroImage 2008;40(4):1516–22.CrossRefGoogle ScholarPubMed
Griebel, ML, Oakes, WJ, Worley, G. The Chiari malformation associated with meningomyelocele. In Rekate, HL, ed. Comprehensive Management of Spina Bifida. Boca Raton, FL: CRC Press, 1991: 67–92.Google Scholar
Del Bigio, MR. Neuropathological changes caused by hydrocephalus. Acta Neuropathol (Berl) 1993;85:573–85.CrossRefGoogle ScholarPubMed
Del Bigio, MR. Cellular damage and prevention in childhood hydrocephalus. Brain Pathol 2004;14:317–24.CrossRefGoogle ScholarPubMed
Dennis, M. Acquired disorders of language in children. In Feinberg, TE, Farah, MJ, eds. Behavioral neurology and neuropsychology. New York: McGraw-Hill, 1996: 737–54.Google Scholar
Landry, SH, Robinson, SS, Copeland, D, et al. Goal-directed behavior and perception of self-competence in children with spina bifida. J Pediatr Psychol 1993;18(3):389–96.CrossRefGoogle ScholarPubMed
Dennis, M, Landry, SH, Barnes, M, et al. A model of neurocognitive function in spina bifida over the lifespan. J Int Neuropsychol Soc 2006;12(2):285–96.CrossRefGoogle Scholar
Landry, SH, Taylor, HB, Guttentag, C, et al. Responsive parenting: closing the learning gap for at-risk children. In Glidden, L, ed. International Review of Research in Mental Retardation, vol. 36. New York: Academic Press; 2008.Google Scholar
Thelen, E, Smith, LB. A Dynamic Systems Approach to the Development of Cognition and Action. Cambridge, MA: MIT Press; 1995.Google Scholar
Landry, SH, Lomax-Bream, L, Barnes, M. The importance of early motor and visual functioning for later cognitive skills in preschoolers with and without spina bifida. J Int Neuropsychol Soc 2003;9:176.Google Scholar
Bertenthal, BI, Campos, JJ, Barreto, KC. Self-produced locomotion: An organizer of emotional, cognitive, and social development in infancy. In Emde, R, Harmon, R, eds. Continuities and Discontinuities in Development. New York: Plenum; 1984: 175–210.CrossRefGoogle Scholar
Hetherington, R, Dennis, M. Motor function profile in children with early onset hydrocephalus. Dev Neuropsychol 1999;15:25–51.CrossRefGoogle Scholar
Liptak, GS. Neural tube defects. In Batshaw, ML, ed. Children with Disabilities, 5th edn. Washington DC: Brookes; 2002: 467–92.Google Scholar
Salman, MS, Sharpe, JA, Lillakas, L, et al. Smooth ocular pursuit in Chiari Type II malformation. Dev Med Child Neurol 2007;49:289–93.CrossRefGoogle ScholarPubMed
Salman, MS, Sharpe, JA, Eizenman, M, et al. Saccades in children with spina bifida and Chiari Type II malformation. Neurology 2005;64:2098–101.CrossRefGoogle ScholarPubMed
McDonald, CM. Rehabilitation of children with spina dysraphism. Neurosurg Clin N Am 1995;6:393.Google Scholar
Miall, RC, Reckess, GZ, Imamizu, H. The cerebellum coordinates eye and hand tracking movements. Nat Neurosci 2001;4:638–44.CrossRefGoogle ScholarPubMed
Miall, RC, Christensen, LOD, Cain, O, et al. Disruption of state estimation in the human lateral cerebellum. PLoS Biol 2007;5(11):e316.CrossRefGoogle ScholarPubMed
Leigh, RJ, Zee, DS. The saccadic system. The Neurology of Eye Movements, 3rd edn. New York: Oxford University Press; 1999: 90–134.Google ScholarPubMed
Dennis, M, Jewell, D, Edelstein, K, et al. Motor learning in children with spina bifida: Intact learning and performance on a ballistic task. J Int Neuropsychol Soc 2006;12:598–608.CrossRefGoogle ScholarPubMed
Lomax-Bream, L, Barnes, M, Copeland, K, et al. The impact of spina bifida on development across the first three years. Dev Neuropsychol 2007;31(1):1–20.CrossRefGoogle Scholar
Dennis, M, Fletcher, JM, Rogers, T, et al. Object-based and action-based visual perception in children with spina bifida and hydrocephalus. J Int Neuropsychol Soc 2002;8(1):95–106.CrossRefGoogle ScholarPubMed
Block, JH, Block, J. The role of ego-control and ego-resiliency in the organization of behavior. In Collins, WA, ed. Minnesota Symposia on Child Psychology. Hillsdale, NJ: Lawrence Erlbaum; 1979.Google Scholar
Mischel, W, Patterson, CJ. Effective plans for self-control in children. In Collins, WA, ed. Minnesota Symposia on Child Psychology. Hillsdale, NJ: Lawrence Erlbaum; 1979: 199–230.Google Scholar
Wertsch, JV. From social interaction to higher psychological processes. Hum Dev 1979;22:1–22.CrossRefGoogle Scholar
Kopp, CB. Antecedents of self-regulation: A developmental perspective. Dev Psychol 1982;18:199–214.CrossRefGoogle Scholar
Ruff, HA, Lawson, KR. Assessment of infants attention during play with objects. In Schaefer, CE, Critlin, K, Sandgrund, A, eds. Play Diagnosis and Assessment. New York: Wiley; 1991: 115–29.Google Scholar
Rafal, R, Henik, A. The neurology of inhibition: Integrating controlled and automatic processes. In Dagenback, D, Carr, T, eds. Inhibitory Process in Attention, Memory, and Language. San Diego, CA: Academic Press; 1994: 1–51.Google Scholar
Taylor, HB, Landry, SH, Cohen, L, et al. Early information processing among infants with spina bifida. Presented at the 34th annual meeting of International Neuropsychological Society in Boston, MA, 2006.Google Scholar
Dennis, M, Fitz, CR, Netley, CT, et al. The intelligence of hydrocephalic children. Arch Neurol 1981;38:607–15.CrossRefGoogle ScholarPubMed
Fletcher, JM, Bohan, TP, Brandt, ME, et al. Morphometric evaluation of the hydrocephalic brain: relationships with cognitive abilities. Childs Nerv Syst 1996;12:192–9.CrossRefGoogle Scholar
White, RW. Motivation reconsidered: the concept of competence. Psychol Rev 1959;66:297–333.CrossRefGoogle ScholarPubMed
Tew, JB. Spina bifida in ordinary schools: handicap, attainment and behavior. Z Kinderchir 1988;43(suppl 11):46–8.Google Scholar
Landry, SH, Copeland, D, Lee, A, et al. Goal-directed behavior in children with spina bifida. Dev Behav Pediatr 1990;11(6):306–11.CrossRefGoogle ScholarPubMed
Denckla, MB. A theory and model of executive function: a neuropsychological perspective. In Lyons, GR, Krasnegor, NA, eds. Attention, Memory, and Executive Functioning. Baltimore, MD: Brookes; 1996: 263–77.Google Scholar
Fletcher, JM, Brookshire, BL, Landry, SH, et al. Attentional skills and executive functions in children with early hydrocephalus. Dev Neuropsychol 1996;12(1):53–76.CrossRefGoogle Scholar
Snow, JH. Executive processes for children with spina bifida. Child Health Care 1999;28(3):241–53.CrossRefGoogle Scholar
Barnes, MA, Huber, J, Johnston, A, et al. A model of comprehension in spina bifida meningomyelocele: Meaning activation, integration, and revision. J Int Neuropsychol Soc 2007;13:854–64.CrossRefGoogle ScholarPubMed
Dennis, M, Jacennik, B, Barnes, MA. The content of narrative discourse in children and adolescents after early-onset hydrocephalus and in normally developing age peers. Brain Lang 1994;46(1):129–65.CrossRefGoogle ScholarPubMed
Badell-Ribera, A, Shulman, K, Paddock, N. The relationship of nonprogressive hydocephalus to intellectual functioning in children with spina bifida cystica. Pediatrics 1966;37(5):787–93.Google Scholar
Barnes, MA, Dennis, MF. Reading comprehension deficits arise from diverse sources: evidence from readers with and without developmental brain pathology. In Cornoldi, C, Oakhill, J, eds. Reading Comprehension Difficulties: Processes and Interventions. New Jersey: Lawrence Erlbaum; 1996: 251–78.Google Scholar
Barnes, MA, Faulkner, H, Wilkinson, M, et al. Meaning construction and integration in children with hydrocephalus. Brain Lang 2004;89(1):47–56.CrossRefGoogle ScholarPubMed
Barnes, MA, Wilkinson, M, Boudousquie, A, et al. Arithmetic processing in children with spina bifida: calculation accuracy, strategy use, and fact retrieval fluency. J Learn Disabil 2006;39:174–87.CrossRefGoogle ScholarPubMed
Barnes, MA, Dennis, M. Discourse after early-onset hydrocephalus: core deficits in children of average intelligence. Brain Lang 1998;61(3):309–34.CrossRefGoogle Scholar
Barnes, MA. The decoding-comprehension dissociation in the reading of children with hydrocephalus: a reply to Yamada. Brain Lang 2002;80:260–3.CrossRefGoogle Scholar
Barnes, MA, Johnston, AM, Dennis, M. Comprehension in a neurodevelopmental disorder, spina bifida myelomeningocele. In Cain, K, Oakhill, J, eds. Children's Comprehension Problems in Oral and Written Langauge: A Cognitive Perspective. New York: Guilford Press; 2007: 193–217.Google Scholar
Wills, KE. Neuropsychological functioning in children with spina bifida and/or hydrocephalus. J Clin Child Psychol 1993;22(2):247–65.CrossRefGoogle Scholar
Barnes, MA, Dennis, M. Reading in children and adolescents after early-onset hydrocephalus and in their normallly-developing age peers: phonological analysis, word recognition, word comprehension and passage comprehension skill. J Pediatr Psychol 1992;17(4):445–65.CrossRefGoogle ScholarPubMed
Barnes, MA, Pengelly, S, Dennis, M, et al. Mathematics skills in good readers with hydrocephalus. J Int Neuropsychol Soc 2002;8:72–82.CrossRefGoogle ScholarPubMed
Barnes, MA, Dennis, M, Hetherington, R. Reading and writing skills in young adults with spina bifida and hydrocephalus. J Int Neuropsychol Soc 2004;10:680–88.CrossRefGoogle ScholarPubMed
Barnes, MA, Smith-Chant, B, Landry, SH. Number processing in neurodevelopmental disorders: Spina bifida myelomeningocele. In Campbell, JID, ed. Handbook of mathematical cognition. New York: Psychology Press; 2005: 299–314.Google Scholar
Dennis, M, Barnes, MA. Numeracy skills in adults with spina bifida. Dev Neuropsychol 2002;21:141–56.CrossRefGoogle Scholar
Hetherington, R, Dennis, M, Barnes, MA, et al. Functional outcome in young adults with spina bifida and hydrocephalus. Childs Nerv Syst 2006;22:117–24.CrossRefGoogle ScholarPubMed
Ris, MD, Ammerman, RT, Waller, N, et al. Taxonicity of nonverbal learning disabilities. J Int Neuropsychol Soc 2007;13:50–8.CrossRefGoogle ScholarPubMed
English, L. The impact of infant executive functions on reading and math outcomes in children with spina bifida. Unpublished masters thesis, 2008.
Papanicolaou, AC, Simos, PG, Fletcher, JM, et al. Early development and plasticity of neurophysiological processes involved in reading. In Foorman, B, ed. Preventing and Remediating Reading Difficulties. Bringing Science to Scale. Timonium, MD: York Press; 2003: 3–21.Google Scholar
King, GA, Shultz, IZ, Steel, K, et al. Self-evaluation and self-concept of adolescents with physical disabilities. Am J Occup Ther 1993;47:132.CrossRefGoogle ScholarPubMed
Coakley, RM, Holmbeck, GN, Bryant, FB. Constructing a prospective model of psychosocial adaptation in young adolescents with spina bifida: an application of optimal data analysis. J Pediatr Psychol 2006;31(10):1084–99.CrossRefGoogle ScholarPubMed
Appleton, PL, Ellis, NC, Minchom, PE, et al. Depressive symptoms and self-concept in young people with spina bifida. J Pediatr Psychol 1996;22(5):707–22.CrossRefGoogle Scholar
Wallander, JL, Feldman, WS, Varni, JW. Physical status and psychosocial adjustment in children with spina bifida. J Pediatr Psychol 1989;14(1):89–102.CrossRefGoogle ScholarPubMed
Ammerman, RT, Kane, VR, Slomka, GT, et al. Psychiatric symptomology and family functioning in children and adolescents with spina bifida. J Clin Psychol Med Settings 1998;5:449–65.CrossRefGoogle Scholar
Moore, C, Kogan, BA, Parekh, A. Impact of urinary incontinence on self-concept in children with spina bifida. J Urol 2004;171:1659–62.CrossRefGoogle ScholarPubMed
Nassau, JH, Drotar, D. Social competence among children with central nervous system-related chronic health conditions: a review. J Pediatr Psychol 1997;22(6):771–93.CrossRefGoogle ScholarPubMed
Fletcher, JM, Brookshire, BL, Landry, SH, et al. Behavioral adjustment of children with hydrocephalus: relationships with etiology, neurological, and family status. J Pediatr Psychol 1995;20(1):109–25.CrossRefGoogle ScholarPubMed
Holmbeck, GN, Westhoven, VC, Shapera, WE, et al. A multi-method, multi-informant, and multi-dimensional perspective on psychosocial adjustment in pre-adolescents with spina bifida. J Consult Clin Psychol 2003;71(4):782–96.CrossRefGoogle Scholar
DiPietro, JA. Baby and the brain: advances in child development. Annu Rev Public Health 2000;21:455–71.CrossRefGoogle ScholarPubMed
Dawson, G, Klinger, LF, Panagiotides, H, et al. Frontal lobe activity and affective behavior of infants of mothers with depressive symptoms. Child Dev 1992;63:725–37.CrossRefGoogle Scholar
Neville, HJ, Bavelier, D, Corina, D, et al. Cerebral organization for language in deaf and hearing subjects: biological constraints and effects of experience. Proc Natl Acad Sci USA 1998;95:922–9.CrossRefGoogle ScholarPubMed
Elman, JL, Bates, EA, Johnson, MH, et al. Rethinking Innateness. Boston: MIT Press; 1996.Google Scholar
Yang, J, Carmichael, SL, Canfield, M, et al. Socioeconomic status in relation to selected birth defects in a large multicentered US case-control study. Am J Epidemiol 2008;167:145–54.CrossRefGoogle Scholar
Holmbeck, GN, Coakley, RM, Hommeyer, JS, et al. Observed and perceived dyadic and systemic functioning in families of preadolescents with spina bifida. J Pediatr Psychol 2002;27(2):177–89.CrossRefGoogle ScholarPubMed
Natriello, G, McDill, EL, Pallas, AM. Schooling Disadvantaged Children: Racing Against Catastrophe. New York: Teachers College Press; 1990.Google Scholar
Lomax-Bream, L, Taylor, HB, Landry, SH, et al. Role of early parenting and motor skills on development in children with spina bifida. J Appl Dev Psychol 2007;28(3):250–63.CrossRefGoogle Scholar
Landry, SH, Smith, KE, Swank, PR. Responsive parenting: establishing early foundations for social, communication, and independent problem-solving skills. Dev Psychol 2006;42(4):627–42.CrossRefGoogle ScholarPubMed
Landry, SH, Chapieski, ML. Visual attention during toy exploration in preterm infants: effects of medical risk and maternal interactions. Infant Behav Dev 1988;11:187–204.CrossRefGoogle Scholar
Landry, SH, Chapieski, ML. Joint attention of six-month-old Down syndrome and preterm infants: I. Attention to toys and mother. Am J Ment Retard 1990;94(5):488–98.Google Scholar
Taylor, HB, Anthony, J, Aghara, R, et al. The interaction of early maternal responsiveness and children's cognitive abilities on later decoding and reading comprehension skills. Early Educ Dev 2008;19(1):188–207.CrossRefGoogle Scholar
Bornstein, MH. How infant and mother jointly contribute to developing cognitive competence in the child. Proc Natl Acad Sci USA 1985;82(21):7470–3.CrossRefGoogle ScholarPubMed
Landry, SH, Denson, SE, Swank, PR. Effects of medical risk and socioeconomic status on the rate of change in cognitive and social development for low birth weight children. J Clin Exp Neuropsychol 1997;19(2):261–74.CrossRefGoogle ScholarPubMed
Landry, SH, Smith, KE, Miller-Loncar, CL, et al. Predicting cognitive-linguistic and social growth curves from early maternal behaviors in children at varying degrees of biological risk. Dev Psychol 1997;33(6):1–14.CrossRefGoogle Scholar
Bell, RC. Contributions of human infants to caregiving and social interaction. In Handel, G, ed. Childhood Socialization. Hawthorne, NY: Aldine de Gruyter; 1988: 103–22.Google Scholar
Braungart-Rieker, J, Garwood, MM, Stifter, CA. Compliance and noncompliance: The roles of maternal control and child temperament. J Appl Dev Psychol 1997;18:411–28.CrossRefGoogle Scholar
Goldberg, S. Prematurity: Effects on parent-infant interaction. J Pediatr Psychol 1978;3:137–44.CrossRefGoogle Scholar
Kogan, KL. Interaction systems between preschool handicapped or developmentally delayed children and their parents. In Field, T, Goldberg, S, Stern, Det al., eds. High-risk Infants and Children: Adult and Peer Interactions. New York: Academic Press; 1980: 227–47.Google Scholar
Drillien, CM. The Growth and Development of the Prematurely Born Infant. Edinburgh, Scotland: E. & S. Livingstone; 1964.Google Scholar
Hess, RD, Shipman, VC. Early experience and the socialization of cognitive modes in children. Child Dev 1965;36(4):869–86.CrossRefGoogle ScholarPubMed
Vermaes, I, Gerris, J, Jansses, J. Parents' social adjustment in families of children with spina bifida: a theory-driven review. J Pediatr Psychol 2007;32(10):1214–26.CrossRefGoogle ScholarPubMed
Guttentag, C, Pedrosa-Josic, C, Landry, SH, et al. Individual variability in parenting profiles and predictors of change: effects of an intervention with disadvantaged mothers. J Appl Dev Psychol 2006;27(4):349–69.CrossRefGoogle Scholar
Dieterich, SE, Landry, SH, Smith, KE, et al. Impact of community mentors on maternal behaviors and child outcomes. J Early Intervention 2006;28(2):111–24.CrossRefGoogle Scholar
Matson, MA, Mahone, EM, Zabel, TA. Serial neuropsychological assessment and evidence of shunt malfunction in spina bifida: a longitudinal case study. Child Neuropsychol 2005;11(4):315–32.CrossRefGoogle ScholarPubMed
Rowley, L. Welcoming babies with spina bifida: a message of hope and support from new and expectant parents. 2007. Available at: http://www.waisman.wisc.edu/nrowley/sb-kids/wbwsb.html.
Landry, SH, Smith, KE, Miller-Loncar, CL, et al. Responsiveness and initiative: Two aspects of social competence. Infant Behav Dev 1997;20(2):259–62.CrossRefGoogle Scholar
Landry, SH, Smith, KE, Miller-Loncar, CL, et al. The relation of change in maternal interactive styles to the developing social competence of full-term and preterm children. Child Dev 1998;69(1):105–23.CrossRefGoogle ScholarPubMed
Landry, SH, Smith, KE, Swank, PR, et al. Early maternal and child influences on children's later independent cognitive and social functioning. Child Dev 2000;71(2):358–75.CrossRefGoogle ScholarPubMed
Landry, SH, Smith, KE, Swank, PR, et al. Responsive parenting: the optimal timing of an intervention across early childhood. Dev Psychol 2008;45(5):1335–53.
Salmon, K. Commentary. Preparing children for medical procedures: taking account of memory. J Pediatr Psychol 2006;31:859–61.CrossRefGoogle Scholar
Hallowell, L, Stewart, S, Silva, CA, et al. Reviewing the process of preparing children for MRI. Pediatr Radiol 2008;38(3):271–9.CrossRefGoogle ScholarPubMed
LeRoy, S, Elixson, EM, O'Brien, P, et al. Recommendations for preparing children and adolescents for invasive cardiac procedures: a statement from the American Heart Association Pediatric Nursing Subcommittee of the Council on Cardiovascular Nursing in collaboration with the Council on Cardiovascular Diseases of the Young. Circulation 2003;108:2550–64.CrossRefGoogle Scholar

Save book to Kindle

To save this book to your Kindle, first ensure [email protected] is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×