1. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (Suppl. 1): 92–104.
2. Creighton, DE, Robertson, CMT, Sauvé, RS, et al. Neurocognitive, functional, and health outcomes at 5 years of age for children after complex cardiac surgery at 6 weeks of age or younger. Pediatrics 2007; 120: 478–486.
3. Forbess, JM, Visconti, KJ, Hancock-Friesen, C, Howe, RC, Bellinger, DC, Jonas, RA. Neurodevelopmental outcome after congenital heart surgery: results from an institutional registry. Circulation 2002; 106 (Suppl. 1): I-95–I-102.
4. Limperopoulos, C, Majnemer, A, Shevell, MI, et al. Predictors of developmental disabilities after open heart surgery in young children with congenital heart defects. J Pediatr 2002; 141: 51–58.
5. Shillingford, AJ, Wernovsky, G. Academic performance and behavioural difficulties after neonatal and infant heart surgery. Pediatr Clin North Am 2004; 51: 1625–1639.
6. Mahle, WT, Clancy, RR, Moss, EM, Gerdes, M, Jobes, DR, Wernovsky, G. Neurodevelopmental outcome and lifestyle assessment in school-aged and adolescent children with hypoplastic left heart syndrome. Pediatrics 2000; 105: 1082–1089.
7. Majnemer, A, Limperopoulos, C, Shevell, M, Rohlicek, C, Rosenblatt, B, Tchervenkoc, C. Developmental and functional outcomes at school entry in children with congenital heart defects. J Pediatr 2008; 153: 55–60.
8. Sparrow, S, Balla, DA, Cicchhetti, DV. Vineland Adaptive Behavior Scales, Interview Edition. Survey Form Manual; a Revision of the Vineland Social Maturity Scale of EA Doll. American Guidance Service, Circle Pines, Minn, 1984.
9. Harrison, PL, Oakland, T. Manual for the Adaptive Behaviour Assessment System II. PsychCorp. Harcourt Assessment Inc., San Antonio, Texas, 2003.
10. Horn, E, Fuchs, D. Using adaptive behaviour in assessment and intervention: an overview. J Spec Educ 1987; 21: 11–26.
11. McGrew, K, Bruininks, R. The factor structure of adaptive behaviour. School Psych Rev 1989; 18: 64–81.
12. American Association on Mental Retardation. Mental Retardation: Definition, Classification, and Systems of Support. American Association on Mental Retardation, Washington, DC, 2002b.
13. Diagnostic and Statistical Manual of Mental Disorders, 4 edn, Text Revision, DSM-IV-TR; American Psychiatric Association (APA), 2000.
14. Robertson, CMT, Joffe, AR, Sauvé, RS, et al. Outcomes from an interprovincial program of newborn open heart surgery. J Pediatr 2004; 144: 86–92.
15. Neufeld, RE, Clark, BG, Robertson, CMT, et al. Five-year neurocognitive and health outcome after neonatal arterial switch operations. J Thorac Cardiovasc Surg 2008; 136: 1413–1421.
16. Atallah, J, Dinu, IA, Joffe, AR, et al. Two-year survival and mental and psychomotor outcomes after the Norwood procedure: an analysis of the modified Blalock-Taussig shunt and right ventricle to pulmonary artery shunt surgical eras. Circulation 2008; 118: 1410–1418.
17. Blishen, BR. The 1981 socioeconomic index for occupations in Canada. Can Res Soc Anth 1987; 24: 465–488.
18. Harrison, PL, Oakland, T. Manual for the Adaptive Behaviour Assessment System II. Table B.8, p 281. PsychCorp. Harcourt Assessment Inc., San Antonio, Texas, 2003.
19. Limperopoulos, C, Majnemer, A, Shevell, M, et al. Functional limitation in young children with congenital heart defects after cardiac surgery. Pediatrics 2001; 108: 1325–1331.
20. Majnemer, A, Limperopoulos, C, Shevell, M, Rohlicek, C, Rosenblatt, B, Tchervenkov, C. Health and well-being of children with congenital cardiac malformations, and their families, following open-heart surgery. Cardiol Young 2006; 16: 157–164.
21. Limperopoulos, C, Majnemer, A, Shevell, MI, Rosenblatt, B, Roblicek, C, Tchervenkov, C. Neurodevelopmental status of newborns and infants with congenital heart defects before and after open heart surgery. J Pediatr 2000; 137: 638–645.
22. Rogers, BT, Msall, ME, Buck, GM, et al. Neurodevelopmental outcome of infants with hypoplastic left heart syndrome. J Pediatr 1995; 126: 497–499.
23. Kern, JH, Hinton, VJ, Nereo, NE, Hayes, CJ, Welton, M. Early developmental outcome after the Norwood procedure for hypoplastic left heart syndrome. Pediatrics 1998; 102: 1148–1152.
24. Karl, TR, Hall, S, Ford, G, et al. Arterial switch with full-flow cardiopulmonary bypass and limited circulatory arrest: neurodevelopmental outcome. J Thorac Cardiovasc Surg 2004; 127: 213–222.
25. Bellinger, DC, Wypiij, D, duPlessis, AJ, et al. Neurodevelopmental status at eight years in children with dextro-transposition of the great arteries: the Boston circulatory arrest trial. J Thorac Cardiovasc Surg 2003; 126: 1385–1396.
26. Bellinger, DC. Are children with congenital cardiac malformations at increased risk of deficits in social cognition? Cardiol Young 2008; 18: 3–9.
27. Hagemo, PS, Skarbo, AB, Rasmussen, M, Fredriksen, PM, Schage, S. An extensive long term follow-up of a cohort of patients with hypoplasia of the left heart. Cardiol Young 2007; 17: 51–55.
28. Rempel, GR, Harrison, MJ. Safeguarding precarious survival: parenting children who have life-threatening heart disease. Qual Health Res 2007; 17: 824–837.
29. Majnemer, A, Mazer, B, Lecker, E, et al. Patterns of use of educational and rehabilitation services at school age for children with congenitally malformed hearts. Cardiol Young 2008; 18: 288–296.
30. Spittle, AJ, Orton, J, Doyle, LW, Boyd, R. Early developmental intervention programs post-hospital discharge to prevent motor and cognitive impairments in preterm infants. Cochrane Database Syst Vol 1, 2009 (no page number).
31. Resnick, MB, Eyler, FC, Nelson, RM, Eitzman, DV, Bucciarelli, RL. Developmental intervention for low birth weight infants: improved early developmental outcome. Pediatrics 1987; 80: 68–74.
32. Gleason, TR, Evans, ME. Perceived vulnerability: a comparison of parents and children. J Child Health Care 2004; 8: 279–287.
33. Rempel, G, Harrison, MJ, Williamson, DL. Is “treat your child normally” helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome? Cardiol Young 2008; 19: 135–144.