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Neurodevelopment and quality of life for children with hypoplastic left heart syndrome: current knowns and unknowns

Published online by Cambridge University Press:  13 December 2011

Caren S. Goldberg*
Affiliation:
Pediatric Cardiology, C. S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan, United States of America
Kathleen Mussatto
Affiliation:
Herma Heart Center, Children's Hospital of Wisconsin, Medical College of Wisconsin, Milwaukee, Wisconsin, United States of America
Daniel Licht
Affiliation:
Departments of Neurology and Pediatrics, Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
Gil Wernovsky
Affiliation:
Division of Pediatric Cardiology, Children's Hospital of Philadelphia, University of Pennsylvania, Philadelphia, Pennsylvania, United States of America
*
Correspondence to: Dr C. S. Goldberg, MD, MS, Associate Professor, Pediatric Cardiology, 1500 East Medical Center Drive, C. S. Mott Children's Hospital, University of Michigan, Ann Arbor, Michigan 48109-0204, United States of America. Tel: +1 734 764 5177; Fax: +1 734 936 9470; E-mail: [email protected]

Abstract

The aim of this review is to describe the current state of knowledge related to neurodevelopmental outcomes and quality of life for children with hypoplastic left heart syndrome and to explore future questions to be answered for this group of children.

Type
Original Article
Copyright
Copyright © Cambridge University Press 2011

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References

1.Gaynor, JW, Gerdes, M, Nord, AS, et al. Is cardiac diagnosis a predictor of neurodevelopmental outcome after cardiac surgery in infancy? J Thorac Cardiovasc Surg 2010; 140: 12301237.CrossRefGoogle ScholarPubMed
2.Goldberg, CS, Schwartz, EM, Brunberg, JA, et al. Neurodevelopmental outcome of patients after the Fontan operation: a comparison between children with hypoplastic left heart syndrome and other functional single ventricle lesions. J Pediatr 2000; 137: 646652.CrossRefGoogle ScholarPubMed
3.Tabbutt, S, Nord, AS, Jarvik, JP, et al. Neurodevelopmental outcomes after staged palliation for hypoplastic left heart syndrome. Pediatrics 2008; 121: 476483.CrossRefGoogle ScholarPubMed
4.Goldberg, CS, Bove, EL, Devaney, EJ, et al. A randomized clinical trial of regional cerebral perfusion versus deep hypothermic circulatory arrest: outcomes for infants with functional single ventricle. J Thoracic Cardiovasc Surg 2007; 133: 880887.CrossRefGoogle ScholarPubMed
5.Rogers, BT, Msall, ME, Buck, GM. Neurodevelopmental outcome of infants with hypoplastic left heart syndrome. J Pediatr 1995; 126: 496498.CrossRefGoogle ScholarPubMed
6.Uzark, K, Lincoln, A, Lamberti, JJ, Mainwaring, RD, Spicer, RL, Moore, JW. Neurodevelopmental outcomes in children with Fontan repair of functional single ventricle. Pediatrics 1998; 101: 630633.CrossRefGoogle ScholarPubMed
7.Wernovsky, G, Stiles, KM, Gauvreau, K, et al. Cognitive development after the Fontan operation. Circulation 2000; 102: 883889.CrossRefGoogle ScholarPubMed
8.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: 10821089.CrossRefGoogle ScholarPubMed
9.Glauser, TA, Rorke, LB, Weinberg, PM, Clancy, RR. Acquired neuropathologic lesions associated with the hypoplastic left heart syndrome. Pediatrics 1990; 85: 9911000.CrossRefGoogle ScholarPubMed
10.Glauser, TA, Rorke, LB, Weinberg, PM, Clancy, RR. Congenital brain anomalies associated with the hypoplastic left heart syndrome. Pediatrics 1990; 85: 984990.CrossRefGoogle ScholarPubMed
11.Shillingford, AJ, Ittenbach, RF, Marino, BS, et al. Aortic morphometry and microcephaly in hypoplastic left heart syndrome. Cardiol Young 2007; 17: 189195.CrossRefGoogle ScholarPubMed
12.Licht, DJ, Shera, DM, Clancy, RR, et al. Brain maturation is delayed in infants with complex congenital heart defects. J Thoracic Cardiovasc Surg 2009; 137: 529537.CrossRefGoogle ScholarPubMed
13.Miller, SP, McQuillen, PS, Hamrick, S, et al. Abnormal brain development in newborns with congenital heart disease. N Engl J Med 2007; 357: 19281938.CrossRefGoogle ScholarPubMed
14.Limperopoulos, C, Tworetzky, W, McElhinney, DB, et al. Brain volume and metabolism in fetuses with congenital heart disease: evaluation with quantitative magnetic resonance imaging and spectroscopy. Circulation 2010; 121: 2633.CrossRefGoogle ScholarPubMed
15.Mahle, WT, Clancy, RR, McGaurn, SP, Goin, JE, Clark, BJ. Impact of prenatal diagnosis on survival and early neurologic morbidity in neonates with the hypoplastic left heart syndrome. Pediatrics 2001; 107: 12771282.CrossRefGoogle ScholarPubMed
16.Galli, KK, Zimmerman, RA, Jarvik, GP, et al. Periventricular leukomalacia is common after neonatal cardiac surgery. J Thorac Cardiovasc Surg 2004; 127: 692704.CrossRefGoogle ScholarPubMed
17.Asou, T, Kado, H, Imoto, Y, et al. Selective cerebral perfusion technique during aortic arch repair in neonates. Ann Thorac Surg 1996; 61: 15461548.CrossRefGoogle ScholarPubMed
18.Pigula, FA, Nemoto, EM, Griffith, BP, Siewers, RD. Regional low-flow perfusion provides cerebral circulatory support during neonatal aortic arch reconstruction. J Thorac Cardiovasc Surg 2000; 119: 331339.CrossRefGoogle ScholarPubMed
19.Dent, CL, Spaeth, JP, Jones, BV, et al. Brain magnetic resonance abnormalities after the Norwood procedure using regional cerebral perfusion. J Thorac Cardiovasc Surg 2006; 131: 190197.CrossRefGoogle ScholarPubMed
20.Jonas, RA, Wypij, D, Roth, SJ, et al. The influence of hemodilution on outcome after hypothermic cardiopulmonary bypass: results of a randomized trial in infants. J Thorac Cardiovasc Surg 2003; 126: 17651774.CrossRefGoogle ScholarPubMed
21.Andropoulis, DB, Hunter, JV, Nelson, DP, et al. Brain immaturity is associated with brain injury before and after neonatal cardiac surgery with high-flow bypass and cerebral oxygenation monitoring. J Thorac Cardiovasc Surg 2010; 139: 543556.CrossRefGoogle Scholar
22.Su, XW, Undar, A. Brain protection during pediatric cardiopulmonary bypass. Artif Organs 2010; 34: E91E102.CrossRefGoogle ScholarPubMed
23.Tweddell, JS, Ghanayem, NS, Hoffman, GM. Pro: NIRS is “standard of care” for postoperative management. Semin Thorac Cardiovasc Surg Annu 2010; 13: 4450.CrossRefGoogle ScholarPubMed
24.Kussman, BD, Wypij, D, Laussen, PC, et al. Relationship of intraoperative cerebral oxygen saturation to neurodevelopmental outcome and brain magnetic resonance imaging at 1 year of age in infants undergoing biventricular repair. Circulation 2010; 122: 245254.CrossRefGoogle ScholarPubMed
25.Ohye, RG, Gaynor, JW, Ghanayem, NS, et al. Design and rationale of a randomized trial comparing the Blalock–Taussig and right ventricle-pulmonary artery shunts in the Norwood procedure. J Thorac Cardiovasc Surg 2008; 136: 968975.CrossRefGoogle ScholarPubMed
26.Ohye, RG, Sleeper, LA, Mahony, L, et al. Comparison of shunt types in the Norwood procedure for single-ventricle lesions. N Engl J Med 2010; 362: 19801992.CrossRefGoogle ScholarPubMed
27.Fuller, S, Nord, AS, Gerdes, M, et al. Predictors of impaired neurodevelopmental outcomes at one year of age after infant cardiac surgery. Eur J Cardiothorac Surg 2009; 36: 4047.CrossRefGoogle ScholarPubMed
28.Ikle, L, Hale, K, Fashaw, L, Boucek, M, Rosenberg, AA. Developmental outcome of patients with hypoplastic left heart syndrome treated with heart transplantation. J Pediatr 2003; 142: 2025.CrossRefGoogle ScholarPubMed
29.Morgan, GJ, Craig, B, Grant, B, Sands, A, Doherty, N, Casey, F. Home video conferencing for patients with severe congenital heart disease following discharge. Congenit Heart Dis 2008; 3: 317324.CrossRefGoogle Scholar
30.McCusker, CG, Doherty, NN, Molloy, B, et al. A controlled trial of early interventions to promote maternal adjustment and development in infants born with severe congenital heart disease. Child Care Health Dev 2010; 36: 110117.CrossRefGoogle ScholarPubMed
31.Uzark, K, Jones, K, Slusher, J, Limbers, CA, Burwinkle, TM, Varni, JW. Quality of life in children with heart disease as perceived by children and parents. Pediatrics 2008; 121: e1060e1067.CrossRefGoogle ScholarPubMed
32.Bredow, T. Health related quality of life. In: Middle Range Theories: Application to Nursing Research. Lippincott Williams & Wilkins, Philadelphia, USA, 2004: 274287.Google Scholar
33.Drotar, D. Health status and quality of life. In: Naar-King S, Ellis DA, Frey MA (eds.). Assessing Childrens Well Being: A Handbook of Measures. Lawrence Erlbaum Associates, Mahwah, NJ, USA, 2004: 14.Google Scholar
34.Lambert, LM, Minich, LL, Newburger, JW, et al. Parent- versus child-reported functional health status after the Fontan procedure. Pediatrics 2009; 124: e942e949.CrossRefGoogle ScholarPubMed
35.Manlhiot, C, Knezevich, S, Radojewski, E, Cullen-Dean, G, Williams, WG, McCrindle, BW. Functional health status of adolescents after the Fontan procedure – comparison with their siblings. Can J Cardiol 2009; 25: e294e300.CrossRefGoogle ScholarPubMed
36.Mellander, M, Berntsson, L, Nilsson, B. Quality of life in children with hypoplastic left heart syndrome. Acta Paediatr 2007; 96: 5357.CrossRefGoogle ScholarPubMed
37.Brosig, CL, Mussatto, KA, Kuhn, EM, Tweddell, JS. Psychosocial outcomes for preschool children and families after surgery for complex congenital heart disease. Pediatr Cardiol 2007; 28: 255262.CrossRefGoogle ScholarPubMed
38.Wernovsky, G, Ghanayem, N, Ohye, R, et al. Hypoplastic left heart syndrome – consensus and controversies in 2007. Cardiol Young 2007; 17 (Suppl 2): 7586.CrossRefGoogle ScholarPubMed