Educational needs of Infant Education children with congenital heart disease. Description of a cohort and a systematic review

Authors

DOI: https://doi.org/10.6018/educatio.410381
Keywords: Educational needs, congenital heart disease, child development, prevention, early care

Abstract

Congenital Heart Disease (CHD) is one of the leading causes of mortality in Spain. This study aims (i) to identify the existence of (co)morbidities in the neurodevelopment of a sample of these children and (ii) to demonstrate the need for them to receive educational intervention as soon as possible through early care programs so that their maturational development can be optimized. This study also presents a systematic review of the research available in the field. With the Bayley-III Child Development Scale, cardiac infants ( = 25.3 months) at the University Hospital La Paz, at the Hospital 12 de Octubre and the Menudos Corazones Foundation were assessed. The biomedical and developmental characteristics of 90 participants are described. 68% have an average cognitive development. Average rates were also reported for linguistic (42%) and motor (44%) development. For the latter category, normal-slow (35% and 24%, respectively) and bordeline (15% and 12%) development rates were found. The review of the scientific literature in this regard corroborates that the communicative-linguistic and the motor areas are the poorest dimensions of development.

Downloads

Download data is not yet available.

Author Biographies

Mª del Rosario Mendoza Carretero, Universidad Complutense de Madrid, Spain

Mª del Rosario Mendoza Carretero, personal investigador en formación de la Universidad Complutense de Madrid, en el Dpto. de Estudios Educativos. Graduada en Pedagogía, con premio extraordinario, y máster en Educación Especial, focalizado en la primera infancia.

ORCiD: 0000-0002-6924-3196

Susana Ares Segura, Hospital Universitario La Paz de Madrid, Spain

Susana Ares Segura, médico adjunto en el Servicio de Neonatología del Hospital U. La Paz de Madrid. Facultativo de la Unidad de Seguimiento de niños prematuros extremos y niños de alto riesgo en este mismo centro desde el 2014.

Belén Sáenz-Rico de Santiago , Universidad Complutense de Madrid

Belén Sáenz-Rico de Santiago, Profesora del Dpto. de Estudios Educativos de la Facultad de Educación de la Universidad Complutense de Madrid. Su labor docente e investigadora se ha desarrollo en el ámbito de la Atención a la diversidad; adscrita a equipos de investigación interuniversitario de Neurociencia y su aportación a los procesos de enseñanza-aprendizaje para la implementación de un modelo inclusivo de la Educación.

ORCiD: 0000-0001-9207-889X

References

Azcoaga, J.E. (1979). Aprendizaje fisiológico y aprendizaje pedagógico. Buenos Aires: Paidós.

Bellinger, D. C., & Newburguer, J.W. (2010). Neuropsychological, psychosocial, and quality-of-life outcomes in children and adolescents with congenital heart disease. Prog Pediatr Cardiol, 29(2), 87-92. https://doi.org/10.1016/j.ppedcard.2010.06.007

Bellinger, D.C., Wypij, D., duPlessis, A.J., Rappaport, L.A., Jonas, R.A., Wernovsky, G., & Newburguer, J.W. (2003). Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston Circulatory Arrest Trial. J Thorac Cardiovasc Surg, 126(5), 1385-96. https://doi.org/10.1016/s0022-5223(03)00711-6

Bishop, D. (2006). What causes specific language impairment in children? Current Directions in Psychological Science, 15 (5), 217–221. https://dx.doi.org/10.1111%2Fj.1467- 8721.2006.00439.x

Blair, C., & Razza, R.P. (2007). Relating effortful control, executive function, and false belief understanding to emerging match and literacy ability in kindegarten. Child Development, 78(2), 647-663. https://doi.org/10.1111/j.1467-8624.2007.01019.x

Calderon, J., Bonnet, D., Courtin, C., Concordet, S., Plumet, M., & Angeard, N. (2010). Executive function and theory of mind in school-aged children after neonatal corrective cardiac surgery for transposition of the great arteries. Dev Med Child Neurol, 52 (12), 1139-1144. https://doi.org/10.1111/j.1469-8749.2010.03735.x

Calderon, J., Angeard, N., Moutier, S., Plumet, M.H., Jambaqué, I., & Bonnet, D. (2012). Impact of prenatal diagnosis on neurocognitive outcomes in children with transposition of the great arteries. The Journal of Pediatrics, 161(1), 94-98. https://doi.org/10.1016/j.jpeds.2011.12.036

Cassidy, A.R., White, M.T., DeMaso, D.R., Newburguer, J.W., & Bellinger, D.C. (2014). Executive function in children and adolescents with critical cyanotic congenital heart disease. J Int Neuropsychol Soc, 21(1), 34-49. https://doi.org/10.1017/S1355617714001027

Chen, C., Harrison, T., & Heathcock, J. (2015). Infants with complex congenital heart diseases show por short-term memory in the mobile paradigm at 3 months of age. Infant Behavior and Development, 40, 12-19. http://dx.doi.org/10.1016/j.infbeh.2015.02.007

Comunidad de Madrid. (2018). Protocolo de Coordinación de Atención Temprana. Disponible en: http://www.madrid.org/bvirtual/BVCM014106.pdf

Creighton, D.E., Robertson, C.M., Sauve, R.S., Moddemann, D.M., Alton, G.Y., Nettel-Aguirre, A.,…Western Canadian Complex Pediatric Therapies Follow-up Group. (2007). Neurocognitive, functional and health outcomes at 5 years of age for children after complex cardiac surgery at 6 weeks of age or younger. Pediatrics,120 (3), e478-86. https://doi.org/10.1542/peds.2006-3250

Fundación Salud Infantil. (2019). Cardiopatías congénitas en el recién nacido. Disponible en: https://www.fundacionsaludinfantil.org/cardiopatias-congenitas-en-el-recien-nacido/

García, D. (2006). Causas de las cardiopatías. Factores de riesgo. Prevención. En J.Santos. (Ed.), Manual para padres de niños con cardiopatía congénita (pp.70-75). España: Ibáñez y Plaza.

Granberg, M., Rydberg, A., & Fisher, A.G. (2008). Activities in daily living and schoolwork task performance in children with complex congenital heart disease. Acta Paediatr, 97(9):1270-1274. https://doi.org/10.1111/j.1651-2227.2008.00880.x

Greco, R. (2016). Jornada de Cardiopatías Congénitas. Situación actual de la cirugía cardiaca de las principales cardiopatías. Madrid, España. Disponible en: http://original.livestream.com/grupocto/video?clipId=pla_cded1b26-a689-470b-bdd4-29f1f9024a3a&utm_source=lslibrary&utm_medium=ui-thumb

Gyoung, Y., Young, I. & Sook, J. (2018). Comparison of second and third editions of the Bayley Scales in Children with suspected developmental delay. Ann Rehabil Med, 42(2): 313-320. https://doi.org/10.5535/arm.2018.42.2.313

Hövels-Gürich, H.H., & McCusker, C. (2016). Neurodevelopmental Patterns in Congenital heart disease across childhood: Longitudinal Studies from Europe. En C. McCusker y F. Casey. (Ed.), Congenital Heart Disease and Neurodevelopment. Understanding and Improving Outcomes (pp. 41-54). UK: Elsevier. http//dx.doi.org/10.1016/B978-0-12-801640-4.00004-4

Hövels-Gürich, H.H., Konrad, K., Skorzenski, D., Minkenberg, R., Herpertz-Dahlmann, B., Messmer, B.J., & Seghaye, M.C. (2007). Long-term behavior and quality of life after corrective cardiac surgery in infancy for tetralogy of Fallot or ventricular septal defect. Pediatr Cardiol, 28(5), 346–354. https://doi.org/10.1007/s00246-006-0123-z

Hallioglu, O., Gurer, G., Bozlu, G., Karpuz, D., Makharoblidze, K., & Okuyaz, C. (2015). Evaluation of neurodevelopment using Bayley-III in children with cyanotic or hemodynamically impaired congenital heart disease. Congenit Heart Dis, 10(6), 537-541. https://doi.org/10.1111/chd.12269

Karsdorp, P.A., Everaerd, W., Kindt, M., & Mulder, B.J. (2007). Psychological and cognitive functioning in children and adolescents with congenital heart disease: a meta-analysis. J Pediatr Psychol, 32(5), 527–541. https://doi.org/10.1093/jpepsy/jsl047

LeRoy, S., Elixson, E.M., O`Brien, P., Tong, E., Turpin, S., Uzark, K.,… Council on Cardiovascular Diseases of the Young. (2003). 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 Diseases of the Young. Circulation,108(20), 2550-2564. https://doi.org/10.1161/01.CIR.0000100561.76609.64

Martín, I. (2006). Supervivencia actual. Secuelas. En J. Santos. (Ed.), Manual para padres de niños con cardiopatía congénita (pp.117-121). España: Ibáñez y Plaza.

Martínez-Biarge, M., Jowett, V.C., Cowan, F.M., & Wusthoff, C.J. (2013). Neurodevelopmental outcome in children with congenital heart disease. Seminars in Fetal & Neonatal Medicine,18(5), 279-285. https://doi.org/10.1016/j.siny.2013.04.006

Matsuzaki, T., Matsui, M., Ichida, F., Nakazawa, J., Hattori, A., Yoshikosi,K.,…Yagihara, T. (2010). Neurodevelopment in 1-year-old Japanese infants after congenital heart surgery. Pediatr Int, 52(3), 420-427. https://doi.org/10.1111/j.1442-200X.2009.02974.x

McCusker, C.G., Armstrong, M.P., Mullen, M., Doherty, N.N., & Casey, F.A. (2013). A sibling-controlled prospective study of outcomes at home and school in children with severe congenital heart disease. Cardiol Young, 23(4), 507–516. https://doi.org/10.1017/S1047951112001667

Medoff-Cooper, B., Iriving, S. Y., Hanlon, A. L., Golfenshtein, N., Radcliffe, J., Stallings, V.A., Marino, B.S., & Ravishankar, C. (2016). The Association among Feeding Mode, Growth, and Developmental Outcomes in Infants with Complex Congenital Heart Disease at 6 and 12 Months of Age. J Pediatr, 169, 154-159. https://doi.org/10.1016/j.jpeds.2015.10.017

Monfort, M., y Juárez, A. (2010). El niño que habla. El lenguaje oral en preescolar. Madrid: CEPE.

Niakoro. (2019). What is a congenital heart disease? Disponible en: https://www.niakoro.com/families/#definicion

Organización Mundial de la Salud (OMS). (2020). Anomalías congénitas. Disponible en: https://www.who.int/es/news-room/fact-sheets/detail/congenital-anomalies

Organización Mundial de la Salud (OMS). (2011). Clasificación Internacional del Funcionamiento de la Discapacidad y de la Salud. Versión para la Infancia y la Adolescencia (CIF-IA). Madrid: Ministerio de Sanidad, Política Social e Igualdad. Centro de Publicaciones

Pérez-Lescure, J., Mosquera, M., Latasa, P., y Crespo, D. (2018). Mortalidad de las cardiopatías congénitas en España durante 10 años (2003-2012). Anales de Pediatría, 88(5): 273-279. https://doi.org/10.1016/j.anpedi.2017.06.002

Pons, A., Fornieles, Y., Caballero, R., Campuzano, R., Conejero, J.A., Ferreras, M.J.,… Tapia, M. (2012). Tabla de equivalencies entre la Organización Diagnóstica de Atención Temprana (ODAT) y la Clasificación Internacional de Enfermedades (CIE) [Recurso electrónico]. Sevilla: Consejería de Salud

Real Decreto 46/2015, de 7 de mayo, por el que se regula la coordinación en la prestación de la atención temprana en la Comunidad de Madrid y se establece el procedimiento para determinar la necesidad de atención temprana. Boletín Oficial de la Comunidad de Madrid, 110, 11 de mayo de 2015, pp. 14-24.

Rollins, C.K., & Newburger, J.W. (2014). Neurodevelopmental outcomes in congenital heart disease. Circulation, 130: e124-e126. https://doi.org/10.1161/CIRCULATIONAHA.114.008556

Salamanca-Zarzuela, B., Morales-Luego, F., Alcalde-Martín, C., y Centeno-Malfaz, F. (2018). Desarrollo psicomotor en pacientes con cardiopatía congénita grave. Revista de Neurología, 66(12): 409-414. https://doi.org/10.33588/rn.6612.2017400

Sananes, R., Manlhiot, C., Kelly, E., Hornberger, L.K., Williams, W.G., MacGregor, D.,…McCrindle, B.W. (2012). Neurodevelopmental outcomes after open heart operations before 3 months of age. Ann Thorac Surg, 93(5), 1577-83. https://doi.org/10.1016/j.athoracsur.2012.02.011

Sociedad Española de Cardiología Pediátrica y Cardiopatías Congénitas (SECPCC). (2014). Manual para padres de niños con cardiopatía congénita. España: Ibáñez&Plaza

Snookes, S.H., Gunn, J.K., Eldridge, B.J., Donath, S.M., Hunt, R.W., Galea, M.P., & Shekerdemian, L. (2010). A systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. Pediatrics,125(4), e818–e827. https://doi.org/10.1542/peds.2009-1959

Villagrá, F. (2019). Cardiopatías congénitas.net: ¿Qué son las cardiopatías congénitas? Madrid, España.: Unidad de Cardiopatías Congénitas. Disponible en: https://cardiopatiascongenitas.net/introcc/quesoncc/

Whitehurst, G. J., & Fischel, J. E. (1994). Practitioner review: Early developmental language delay: what, if anything, should the clinician do about it? J Child Psychol Psychiatry, 35(4), 613–648. https://doi.org/10.1111/j.1469-7610.1994.tb01210.x

Williams, I.A., Fifer, W.P., & Andrews, H. (2015). Fetal Growth and Neurodevelopmental Outcome in Congenital Heart Disease. Pediatr Cardiol, 36(6), 1135-1144. doi: 10.1007/s00246-015-1132-6

Xunta de Galicia. (s.f.). Protocolo de coordinación, intervención y derivación interinstitucional en atención temprana. Disponible en: https://escolasaude.sergas.es/Docs/EGSPC/pilula/Sociosanitarios/resources/protocolo_atencion_temprana.pdf

Published
24-06-2021
How to Cite
Mendoza Carretero, M. del R., Ares Segura, S., & Sáenz-Rico de Santiago , B. . (2021). Educational needs of Infant Education children with congenital heart disease. Description of a cohort and a systematic review . Educatio Siglo XXI, 39(2), 395–418. https://doi.org/10.6018/educatio.410381