Hostname: page-component-54dcc4c588-rz4zl Total loading time: 0 Render date: 2025-10-04T18:14:10.965Z Has data issue: false hasContentIssue false
  • English
  • Français

Neurodevelopmental evaluation strategies for children with congenital heart disease aged birth through 5 years: recommendations from the cardiac neurodevelopmental outcome collaborative

Part of: Surgery Hypoplastic Left Heart Syndrome (HLHS)

Published online by Cambridge University Press:  04 November 2020

Janice Ware ,
Jennifer L. Butcher ,
Beatrice Latal ,
Anjali Sadhwani ,
Caitlin K. Rollins ,
Cheryl L. Brosig Soto ,
Samantha C. Butler ,
Patricia B. Eiler-Sims ,
Catherine V. Ullman Shade  and
Gil Wernovsky
Janice Ware*
Affiliation:
Departments of Medicine and Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Jennifer L. Butcher
Affiliation:
Department of Pediatrics, C.S. Mott Children’s Hospital, University of Michigan School of Medicine, Ann Arbor, MI, USA
Beatrice Latal
Affiliation:
Child Development Center, University Children’s Hospital, Zürich, Switzerland Department of Pediatrics, University of Zurich, Zürich, Switzerland
Anjali Sadhwani
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Caitlin K. Rollins
Affiliation:
Department of Neurology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Cheryl L. Brosig Soto
Affiliation:
Herma Heart Institute, Children’s Wisconsin and Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA
Samantha C. Butler
Affiliation:
Department of Psychiatry, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Patricia B. Eiler-Sims
Affiliation:
Department of Developmental and Behavioral Pediatrics, Cincinnati Children’s, Cincinnati, OH, USA
Catherine V. Ullman Shade
Affiliation:
Department of Cardiology, Boston Children’s Hospital and Harvard Medical School, Boston, MA, USA
Gil Wernovsky
Affiliation:
Department of Cardiology, Children’s National Hospital, Washington, DC, USA Department of Critical Care, Children’s National Hospital, Washington, DC, USA Department of Pediatrics, George Washington University School of Medicine and Health Sciences, Washington, DC, USA
*
Author for correspondence: Janice Ware, PhD, Boston Children’s Hospital, Developmental Medicine Center, 300 Longwood Avenue, Boston, MA 02115, USA. Tel: +1 617 919 1804; Fax: 1-617-730-0252. E-mail: janice.ware@childrens.harvard.edu
Get access Rights & Permissions [Opens in a new window]

Abstract

This paper provides specific guidelines for the neurodevelopmental evaluation of children aged birth through 5 years with complex congenital heart disease. There is wide recognition that children with congenital heart disease are at high risk for neurodevelopmental impairments that are first apparent in infancy and often persist as children mature. Impairments among children with complex congenital heart disease cross developmental domains and affect multiple functional abilities. The guidelines provided are derived from the substantial body of research generated over the past 30 years describing the characteristic developmental profiles and the long-term trajectories of children surviving with complex congenital heart conditions. The content and the timing of the guidelines are consistent with the 2012 American Heart Association and the American Academy of Pediatrics scientific statement documenting the need for ongoing developmental monitoring and assessment from infancy through adolescence. The specific guidelines offered in this article were developed by a multidisciplinary clinical research team affiliated with the Cardiac Neurodevelopmental Outcome Collaborative, a not-for-profit organisation established to determine and implement best neurodevelopmental practices for children with congenital heart disease. The guidelines are designed for use in clinical and research applications and offer an abbreviated core protocol and an extended version that expands the scope of the evaluation. The guidelines emphasise the value of early risk identification, use of evidence-based assessment instruments, consideration of family and cultural preferences, and the importance of providing multidimensional community-based services to remediate risk.

Keywords

Congenital heart diseaseneurodevelopmentinfanttoddlerpreschoolassessmentevaluation

Information

Type
Original Article
Information
Cardiology in the Young , Volume 30 , Issue 11 , November 2020 , pp. 1609 - 1622
Check for updates
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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.)

Article purchase

Temporarily unavailable

References

Latal, B. Neurodevelopmental outcomes of the child with congenital heart disease. Clin Perinatol 2016; 43: 173–185. doi: 10.1016/j.clp.2015.11.012 CrossRefGoogle ScholarPubMed
Limperopoulos, C, Tworetzky, W, McElhinney, DB, et al. Brain volume and metabolism in fetuses with congenital heart disease. Circulation 2010; 121: 26–33. doi: 10.1161/CIRCULATIONAmerican Heart Association.109.865568 CrossRefGoogle ScholarPubMed
Marelli, A, Miller, SP, Marino, BS, Jefferson, AL, Newburger, JW. The brain in congenital heart disease across the lifespan: the cumulative burden of injury. Circulation 2016; 133: 1951–1962. doi: 10.1161/CIRCULATIONAmerican Heart Association.115.019881 CrossRefGoogle ScholarPubMed
Salt, A, Redshaw, M. Neurodevelopmental follow-up after preterm birth: follow up after two years. Early Hum Dev 2006; 82: 185–197. doi: 10.1016/j.earlhumdev.2005.12.015 CrossRefGoogle ScholarPubMed
Allen, MC. Neurodevelopmental outcomes of preterm infants. Curr Opin Neurol 2008; 21: 123. doi: 10.1097/WCO.0b013e3282f88bb4 CrossRefGoogle ScholarPubMed
Colvin, M, McGuire, W, Fowlie, PW. Neurodevelopmental outcomes after preterm birth. BMJ 2004; 329: 1390–1393. doi: 10.1136/bmj.329.7479.1390 CrossRefGoogle ScholarPubMed
Aylward, GP. Neurodevelopmental outcomes of infants born prematurely. J Dev Behav Pediatr 2014; 35: 394–407. doi: 10.1097/01.DBP.0000452240.39511.d4 CrossRefGoogle ScholarPubMed
Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management. Circulation 2012; 126: 1143–1172. doi: 10.1161/CIR.0b013e318265ee8a CrossRefGoogle ScholarPubMed
Rollins, CK, Newburger, JW. Neurodevelopmental outcomes in congenital heart disease. Circulation 2014; 130: e124–e126. doi: 10.1161/CIRCULATIONAmerican Heart Association.114.008556 CrossRefGoogle ScholarPubMed
Rollins, CK, Newburger, JW, Roberts, AE. Genetic contribution to neurodevelopmental outcomes in congenital heart disease: are some patients predetermined to have developmental delay? Curr Opin Pediatr 2017; 29: 529–533. doi: 10.1097/MOP.0000000000000530 CrossRefGoogle ScholarPubMed
Cardiac Neurodevelopmental Outcome Collaborative | Cardiac Neurodevelopmental Outcome Collaborative. Retrieved April 5, 2019, from https://www.cardiacneuro.org/ Google Scholar
Gaynor, JW, Stopp, C, Wypij, D, et al. Neurodevelopmental outcomes after cardiac surgery in infancy. Pediatrics 2015; 135: 816–825. doi: 10.1542/peds.2014-3825 CrossRefGoogle ScholarPubMed
Bellinger, DC, Wypij, D, Kuban, KCK, et al. Developmental and neurological status of children at 4 years of age after heart surgery with hypothermic circulatory arrest or low-flow cardiopulmonary bypass. Circulation 1999; 100: 526–532. doi: 10.1161/01.CIR.100.5.526 CrossRefGoogle ScholarPubMed
Goldberg, CS, Hu, C, Brosig, C, et al. Adaptive behavior and quality of life at 6 years for children with hypoplastic left heart syndrome and related abnormalities: findings from the pediatric heart network single ventricle extension study. Circulation 2017; 136 (suppl_1): A16838–A16838. doi: 10.1161/circ.136.suppl_1.16838 Google Scholar
Butler, SC, Sadhwani, A, Stopp, C, et al. Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. Congenit Heart Dis 2019; 14: 236–245. doi: 10.1111/congenital heart disease.12686 CrossRefGoogle ScholarPubMed
DeMaso, DR, Calderon, J, Taylor, GA, et al. Psychiatric disorders in adolescents with single ventricle congenital heart disease. Pediatrics 2017; 139: e20162241. doi: 10.1542/peds.2016-2241 CrossRefGoogle ScholarPubMed
Kasmi, L, Bonnet, D, Montreuil, M, et al. Neuropsychological and psychiatric outcomes in dextro-transposition of the great arteries across the lifespan: a state-of-the-art review. Front Pediatr 2017. doi: 10.3389/fped.2017.00059 CrossRefGoogle ScholarPubMed
Mills, R, McCusker, CG, Tennyson, C, Hanna, D. Neuropsychological outcomes in congenital heart disease beyond childhood: a meta-analysis. Cardiol Young 2018; 28: 421–431. doi: 10.1017/S104795111700230X CrossRefGoogle ScholarPubMed
von Rhein, M, Buchmann, A, Hagmann, C, et al. Severe congenital heart defects are associated with global reduction of neonatal brain volumes. J Pediatr 2015; 167: 1259–1263.e1. doi: 10.1016/j.jpeds.2015.07.006 CrossRefGoogle ScholarPubMed
DeMaso, DR, Labella, M, Taylor, GA, et al. Psychiatric disorders and function in adolescents with d-transposition of the great arteries. J Pediatr 2014; 165: 760–766. doi: 10.1016/j.jpeds.2014.06.029 CrossRefGoogle ScholarPubMed
Stene-Larsen, K, Brandlistuen, RE, Holmstrøm, H, et al. Longitudinal analysis of emotional problems in children with congenital heart defects: a follow-up from age 6 to 36 months. J Dev Behav Pediatr 2011; 32: 461–464. doi: 10.1097/DBP.0b013e3182202d2b CrossRefGoogle ScholarPubMed
Stene-Larsen, K, Brandlistuen, RE, Holmstrøm, H, Landolt, MA, Eskedal, LT, Vollrath, ME. Emotional reactivity in infants with congenital heart defects: findings from a large case-cohort study in Norway. Acta Paediatr 2010; 99: 52–55. doi: 10.1111/j.1651-2227.2009.01515.x Google ScholarPubMed
Clemente, C, Barnes, J, Shinebourne, E, Stein, A. Are infant behavioural feeding difficulties associated with congenital heart disease? Child Care Health Dev 2001; 27: 47–59. doi: 10.1046/j.1365-2214.2001.00199.x CrossRefGoogle ScholarPubMed
Indramohan, G, Pedigo, TP, Rostoker, N, Cambare, M, Grogan, T, Federman, MD. Identification of risk factors for poor feeding in infants with congenital heart disease and a novel approach to improve oral feeding. J Pediatr Nurs 2017; 35: 149–154. doi: 10.1016/j.pedn.2017.01.009 CrossRefGoogle Scholar
Medoff-Cooper, B, Ravishankar, C. Nutrition and growth in congenital heart disease: a challenge in children. Curr Opin Cardiol 2013; 28: 122. doi: 10.1097/HCO.0b013e32835dd005 CrossRefGoogle ScholarPubMed
Tregay, J, Brown, K, Crowe, S, Bull, C, Knowles, R, Wray, J. “I was so worried about every drop of milk” – feeding problems at home are a significant concern for parents after major heart surgery in infancy. Matern Child Nutr 2017; 13: e12302. doi: 10.1111/mcn.12302 CrossRefGoogle ScholarPubMed
Daniels, JM, Harrison, TM. A case study of the environmental experience of a hospitalized newborn infant with complex congenital heart disease. J Cardiovasc Nurs 2016; 31: 390. doi: 10.1097/JCN.0000000000000273 CrossRefGoogle ScholarPubMed
Wernovsky, G, Lihn, SL, Olen, MM. Creating a lesion-specific “roadmap” for ambulatory care following surgery for complex congenital cardiac disease. Cardiol Young 2017; 27: 648–662. doi: 10.1017/S1047951116000974 CrossRefGoogle ScholarPubMed
Wernovsky, G, Licht, DJ. Neurodevelopmental outcomes in children with congenital heart disease – what can we impact? Pediatr Crit Care Med J Soc Crit Care Med World Fed Pediatr Intensive Crit Care Soc 2016; 17: S232–S242. doi: 10.1097/PCC.0000000000000800 Google ScholarPubMed
Kharitonova, M, Marino, BS. Chapter 5 – An emergent phenotype: a critical review of neurodevelopmental outcomes for complex congenital heart disease survivors during infancy, childhood, and adolescence. In: McCusker, C, Casey, F (eds). Congenital Heart Disease and Neurodevelopment. Academic Press, 2016: 55–87. doi: 10.1016/B978-0-12-801640-4.00005-6 CrossRefGoogle Scholar
Fourdain, S, St-Denis, A, Harvey, J, et al. Language development in children with congenital heart disease aged 12–24 months. Eur J Paediatr Neurol 2019. doi: 10.1016/j.ejpn.2019.03.002 CrossRefGoogle ScholarPubMed
Rollins, CK, Asaro, LA, Akhondi-Asl, A, et al. White matter volume predicts language development in congenital heart disease. J Pediatr 2017; 181: 42–48.e2. doi: 10.1016/j.jpeds.2016.09.070 CrossRefGoogle ScholarPubMed
Brosig, CL, Bear, L, Allen, S, et al. Preschool neurodevelopmental outcomes in children with congenital heart disease. J Pediatr 2017; 183: 80–86.e1. doi: 10.1016/j.jpeds.2016.12.044 CrossRefGoogle ScholarPubMed
Goldsworthy, M, Franich-Ray, C, Kinney, S, Shekerdemian, L, Beca, J, Gunn, J. Relationship between social-emotional and neurodevelopment of 2-year-old children with congenital heart disease. Congenit Heart Dis 2016; 11: 378–385. doi: 10.1111/congenital heart disease.12320 CrossRefGoogle ScholarPubMed
Peyvandi, S, Latal, B, Miller, SP, McQuillen, PS. The neonatal brain in critical congenital heart disease: insights and future directions. NeuroImage 2019; 185: 776–782. doi: 10.1016/j.neuroimage.2018.05.045 CrossRefGoogle ScholarPubMed
Razzaghi, H, Oster, M, Reefhuis, J. Long-term outcomes in children with congenital heart disease: national health interview survey. J Pediatr 2015; 166: 119–124.e1. doi: 10.1016/j.jpeds.2014.09.006 CrossRefGoogle ScholarPubMed
Gerstle, M, Beebe, DW, Drotar, D, Cassedy, A, Marino, BS. Executive functioning and school performance among pediatric survivors of complex congenital heart disease. J Pediatr 2016; 173: 154–159. doi: 10.1016/j.jpeds.2016.01.028 CrossRefGoogle ScholarPubMed
Mulkey, SB, Bai, S, Luo, C, et al. School-age test proficiency and special education after congenital heart disease surgery in infancy. J Pediatr 2016; 178: 47–54.e1. doi: 10.1016/j.jpeds.2016.06.063 CrossRefGoogle ScholarPubMed
Brosig, CL, Bear, L, Allen, S, et al. Neurodevelopmental outcomes at 2 and 4 years in children with congenital heart disease. Congenit Heart Dis 2018; 13: 700–705. doi: 10.1111/congenital heart disease.12632 CrossRefGoogle ScholarPubMed
Naef, N, Liamlahi, R, Beck, I, et al. Neurodevelopmental profiles of children with congenital heart disease at school age. J Pediatr 2017; 188: 75–81. doi: 10.1016/j.jpeds.2017.05.073 CrossRefGoogle ScholarPubMed
Nattel, SN, Adrianzen, L, Kessler, EC, et al. Congenital heart disease and neurodevelopment: clinical manifestations, genetics, mechanisms, and implications. Can J Cardiol 2017; 33: 1543–1555. doi: 10.1016/j.cjca.2017.09.020 CrossRefGoogle ScholarPubMed
Farr, SL, Downing, KF, Riehle-Colarusso, T, Abarbanell, G. Functional limitations and educational needs among children and adolescents with heart disease. Congenit Heart Dis 2018; 13: 633–639. doi: 10.1111/congenital heart disease.12621 CrossRefGoogle ScholarPubMed
Tsao, P-C, Lee, Y-S, Jeng, M-J, et al. Additive effect of congenital heart disease and early developmental disorders on attention-deficit/hyperactivity disorder and autism spectrum disorder: a nationwide population-based longitudinal study. Eur Child Adolesc Psychiatry 2017; 26: 1351–1359. doi: 10.1007/s00787-017-0989-8 CrossRefGoogle ScholarPubMed
Ringle, ML, Wernovsky, G. Functional, quality of life, and neurodevelopmental outcomes after congenital cardiac surgery. Semin Perinatol 2016; 40: 556–570. doi: 10.1053/j.semperi.2016.09.008 CrossRefGoogle ScholarPubMed
Oliver, AM, Wright, KD, Kakadekar, A, et al. Health anxiety and associated constructs in children and adolescents with congenital heart disease: a CHAMPS cohort study. J Health Psychol. doi: 10.1177/1359105318755263 Google Scholar
Cassidy, AR, Bernstein, JH, Bellinger, DC, Newburger, JW, DeMaso, DR. Visual-spatial processing style is associated with psychopathology in adolescents with critical congenital heart disease. Clin Neuropsychol 2018; 33: 760–778. doi: 10.1080/13854046.2018.1503333 CrossRefGoogle ScholarPubMed
Costello, CL, Gellatly, M, Daniel, J, Justo, RN, Weir, K. Growth restriction in infants and young children with congenital heart disease. Congenit Heart Dis 2015; 10: 447–456. doi: 10.1111/congenital heart disease.12231 CrossRefGoogle ScholarPubMed
Blasquez, A, Clouzeau, H, Fayon, M, et al. Evaluation of nutritional status and support in children with congenital heart disease. Eur J Clin Nutr 2016; 70: 528–531. doi: 10.1038/ejcn.2015.209 CrossRefGoogle ScholarPubMed
Mitting, R, Marino, L, Macrae, D, Shastri, N, Meyer, R, Pathan, N. Nutritional status and clinical outcome in postterm neonates undergoing surgery for congenital heart disease. Pediatr Crit Care Med 2015; 16: 448. doi: 10.1097/PCC.0000000000000402 CrossRefGoogle ScholarPubMed
Aguilar, DC, Raff, GW, Tancredi, DJ, Griffin, IJ. Childhood growth patterns following congenital heart disease. Cardiol Young 2015; 25: 1044–1053. doi: 10.1017/S104795111400153X CrossRefGoogle ScholarPubMed
Gong, Y-H, Ji, C-Y, Shan, J-P. A longitudinal study on the catch-up growth of preterm and term infants of low, appropriate, and high birth weight. Asia Pac J Public Health 2015; 27: NP1421–NP1431. doi: 10.1177/1010539513489129 CrossRefGoogle ScholarPubMed
Zimmerman Emily. Do infants born very premature and who have very low birth weight catch up with their full term peers in their language abilities by early school age? J Speech Lang Hear Res 2018; 61: 53–65. doi: 10.1044/2017_JSLHR-L-16-0150 CrossRefGoogle Scholar
Britto, PR, Lye, SJ, Proulx, K, et al. Nurturing care: promoting early childhood development. Lancet 2017; 389: 91–102. doi: 10.1016/S0140-6736(16)31390-3 CrossRefGoogle ScholarPubMed
Spittle, A, Orton, J, Anderson, PJ, Boyd, R, Doyle, LW. Early developmental intervention programmes provided post hospital discharge to prevent motor and cognitive impairment in preterm infants. Cochrane Database Syst Rev 2015. doi: 10.1002/14651858.CD005495.pub4 CrossRefGoogle ScholarPubMed
Bradshaw, J, Steiner, AM, Gengoux, G, Koegel, LK. Feasibility and effectiveness of very early intervention for infants at-risk for autism spectrum disorder: a systematic review. J Autism Dev Disord 2015; 45: 778–794. doi: 10.1007/s10803-014-2235-2 CrossRefGoogle ScholarPubMed
Chronis-Tuscano, A, Danko, CM, Rubin, KH, Coplan, RJ, Novick, DR. Future directions for research on early intervention for young children at risk for social anxiety. J Clin Child Adolesc Psychol 2018; 47: 655–667. doi: 10.1080/15374416.2018.1426006 CrossRefGoogle ScholarPubMed
Little, M, Mount, K, Mount, K. Prevention and Early Intervention with Children in Need. Routledge, 2018. doi: 10.4324/9780429447563 CrossRefGoogle Scholar
French, L, Kennedy, EMM. Annual research review: early intervention for infants and young children with, or at-risk of, autism spectrum disorder: a systematic review. J Child Psychol Psychiatry 2018; 59: 444–456. doi: 10.1111/jcpp.12828 CrossRefGoogle ScholarPubMed
Gallagher, A, Dagenais, L, Doussau, A, et al. Significant motor improvement in an infant with congenital heart disease and a rolandic stroke: the impact of early intervention. Dev Neurorehabilitation 2017; 20: 165–168. doi: 10.3109/17518423.2015.1132280 CrossRefGoogle Scholar
Estes, A, Munson, J, Rogers, SJ, Greenson, J, Winter, J, Dawson, G. Long-term outcomes of early intervention in 6-year-old children with autism spectrum disorder. J Am Acad Child Adolesc Psychiatry 2015; 54: 580–587. doi: 10.1016/j.jaac.2015.04.005 CrossRefGoogle ScholarPubMed
Shonkoff, JP. Capitalizing on advances in science to reduce the health consequences of early childhood adversity. JAMA Pediatr 2016; 170: 1003–1007. doi: 10.1001/jamapediatrics.2016.1559 CrossRefGoogle ScholarPubMed
Berlin, LJ, Brooks-Gunn, J, McCarton, C, McCormick, MC. The effectiveness of early intervention: examining risk factors and pathways to enhanced development. Prev Med 1998; 27: 238–245. doi: 10.1006/pmed.1998.0282 CrossRefGoogle ScholarPubMed
Bonnier, C. Evaluation of early stimulation programs for enhancing brain development. Acta Pædiatrica 2008; 97: 853–858. doi: 10.1111/j.1651-2227.2008.00834.x CrossRefGoogle ScholarPubMed
Center on the Developing Child at Harvard University. Center on the Developing Child at Harvard University. Retrieved April 5, 2019, from https://developingchild.harvard.edu/ Google Scholar
Romeo, RR, Christodoulou, JA, Halverson, KK, et al. Socioeconomic status and reading disability: neuroanatomy and plasticity in response to intervention. Cereb Cortex 2018; 28: 2297–2312. doi: 10.1093/cercor/bhx131 CrossRefGoogle ScholarPubMed
Roberts, G, Howard, K, Spittle, AJ, Brown, NC, Anderson, PJ, Doyle, LW. Rates of early intervention services in very preterm children with developmental disabilities at age 2 years. J Paediatr Child Health 2008; 44: 276–280. doi: 10.1111/j.1440-1754.2007.01251.x CrossRefGoogle ScholarPubMed
McManus, B, McCormick, MC, Acevedo-Garcia, D, Ganz, M, Hauser-Cram, P. The effect of state early intervention eligibility policy on participation among a cohort of young CSHCN. Pediatrics 2009; 124 (Supplement 4): S368–S374. doi: 10.1542/peds.2009-1255G CrossRefGoogle ScholarPubMed
Bailey, DB, Hebbeler, K, Scarborough, A, Spiker, D, Mallik, S. First experiences with early intervention: a national perspective. Pediatrics 2004; 113: 887–896. doi: 10.1542/peds.113.4.887 CrossRefGoogle ScholarPubMed
Brotherson, MJ, Goldstein, BL. Time as a resource and constraint for parents of young children with disabilities: implications for early intervention services. Top Early Child Spec Educ 1992; 12: 508–527. doi: 10.1177/027112149201200408 CrossRefGoogle Scholar
McWilliam, RA, et al. Satisfaction and struggles: family perceptions of early intervention services. J Early Interv 1995; 19: 43–60.CrossRefGoogle Scholar
McWilliam, RA, et al. Therapy services in early intervention: current status, barriers, and recommendations. Top Early Child Spec Educ 1996; 16: 348–374.CrossRefGoogle Scholar
Jimenez, ME, Barg, FK, Guevara, JP, Gerdes, M, Fiks, AG. Barriers to evaluation for early intervention services: parent and early intervention employee perspectives. Acad Pediatr 2012; 12: 551–557. doi: 10.1016/j.acap.2012.08.006 CrossRefGoogle ScholarPubMed
Little, AA, Kamholz, K, Corwin, BK, Barrero-Castillero, A, Wang, CJ. Understanding barriers to early intervention services for preterm infants: lessons from two states. Acad Pediatr 2015; 15: 430–438. doi: 10.1016/j.acap.2014.12.006 CrossRefGoogle ScholarPubMed
Individuals with Disabilities Education Act | IDEA. Retrieved April 5, 2019, from https://sites.ed.gov/idea/ Google Scholar
OASAM – Office of the Assistant Secretary for Administration and Management (OASAM) – United States Department of Labor. Retrieved April 5, 2019, from https://www.dol.gov/oasam/regs/statutes/sec504.htm Google Scholar
Ykeda, DS, Lorenzi-Filho, G, Lopes, AAB, Alves, RSC. Sleep in infants with congenital heart disease. Clinics 2009; 64: 1205–1210. doi: 10.1590/S1807-59322009001200011 CrossRefGoogle ScholarPubMed
Delaney, AL, Mussatto, K, Slicker, J, Goday, PS. High prevalence of feeding disorders in young children with congenital heart disease. Pediatrics 2018; 142: 68. doi: 10.1542/peds.142.1_MeetingAbstract.68 Google Scholar
Oster Matthew, E, Stephanie, W, Hill Kevin, D, Knight Jessica, H, Meyer Robert, E. Academic outcomes in children with congenital heart defects. Circ Cardiovasc Qual Outcomes 2017; 10: e003074. doi: 10.1161/CIRCOUTCOMES.116.003074 Google Scholar
Woolf-King Sarah, E, Alexandra, A, Arnold Emily, A, Weiss Sandra, J, David, T. Mental health among parents of children with critical congenital heart defects: a systematic review. J Am Heart Assoc 6: e004862. doi: 10.1161/JAmerican Heart Association.116.004862 Google Scholar
Sood, E, Karpyn, A, Demianczyk, A, et al. Mothers and fathers experience stress of congenital heart disease differently. Pediatr Crit Care Med 2018; 19: 626–634. doi: 10.1097/PCC.0000000000001528 CrossRefGoogle ScholarPubMed
Kolaitis, GA, Meentken, MG, Utens, EMWJ. Mental health problems in parents of children with congenital heart disease. Front Pediatr 2017; 5. doi: 10.3389/fped.2017.00102 CrossRefGoogle ScholarPubMed
Sabzevari, S, Nematollahi, M, Mirzaei, T, Ravari, A. The burden of care: mothers’ experiences of children with congenital heart disease. Int J Community Based Nurs Midwifery 2016; 4: 374–385.Google ScholarPubMed
Davey, B, Tian, Z-Y, Ejembi, A, et al. Psychological stress and maternal cortisol when carrying a fetus with congenital heart disease. J Am Coll Cardiol 2019; 67 (13 Supplement): 921. doi: 10.1016/S0735-1097(16)30922-6 CrossRefGoogle Scholar
Nakazuru, A, Sato, N, Nakamura, N. Stress and coping in Japanese mothers whose infants required congenital heart disease surgery. Int J Nurs Pract 2017; 23 (S1): e12550. doi: 10.1111/ijn.12550 CrossRefGoogle ScholarPubMed
Golfenshtein, N, Hanlon, AL, Deatrick, JA, Medoff-Cooper, B. Parenting stress in parents of infants with congenital heart disease and parents of healthy infants: the first year of life. Compr Child Adolesc Nurs 2017; 40: 294–314. doi: 10.1080/24694193.2017.1372532 CrossRefGoogle ScholarPubMed
Cicchetti, D. Neural plasticity, sensitive periods, and psychopathology. Dev Psychopathol 2015; 27: 319–320. doi: 10.1017/S0954579415000012 CrossRefGoogle ScholarPubMed
Spencer-Smith, MM, Spittle, AJ, Lee, KJ, Doyle, LW, Anderson, PJ. Bayley-III cognitive and language scales in preterm children. Pediatrics 2015; 135: e1258–e1265. doi: 10.1542/peds.2014-3039 CrossRefGoogle ScholarPubMed
Spittle, AJ, Spencer-Smith, MM, Eeles, AL, et al. Does the Bayley-III motor scale at 2 years predict motor outcome at 4 years in very preterm children? Dev Med Child Neurol 2013; 55: 448–452. doi: 10.1111/dmcn.12049 CrossRefGoogle ScholarPubMed
Aylward, GP, Aylward, BS. The changing yardstick in measurement of cognitive abilities in infancy. J Dev Behav Pediatr 2011; 32: 465. doi: 10.1097/DBP.0b013e3182202eb3 CrossRefGoogle ScholarPubMed
Bode, MM, D’Eugenio, DB, Mettelman, BB, Gross, SJ. Predictive validity of the Bayley, third edition at 2 years for intelligence quotient at 4 years in preterm infants. J Dev Behav Pediatr 2014; 35: 570. doi: 10.1097/DBP.0000000000000110 CrossRefGoogle ScholarPubMed
Creighton, DE, Tang, S, Newman, J, Hendson, L, Sauve, R. Establishing Bayley-III cut-off scores at 21 months for predicting low IQ scores at 3 years of age in a preterm cohort. Paediatr Child Health 2018; 23: e163–e169. doi: 10.1093/pch/pxy038 CrossRefGoogle Scholar
Hack, M. Dilemmas in the measurement of developmental outcomes of preterm children. J Pediatr 2012; 160: 537–538. doi: 10.1016/j.jpeds.2011.11.021 CrossRefGoogle ScholarPubMed
Hack, M. Poor predictive validity of the Bayley scales of infant development for cognitive function of extremely low birth weight children at school age. Pediatrics 2005; 116: 333–341. doi: 10.1542/peds.2005-0173 CrossRefGoogle ScholarPubMed
Yu, Y-T, Hsieh, W-S, Hsu, C-H, et al. A psychometric study of the Bayley scales of infant and toddler development – 3rd edition for term and preterm Taiwanese infants. Res Dev Disabil 2013; 34: 3875–3883. doi: 10.1016/j.ridd.2013.07.006 CrossRefGoogle ScholarPubMed
Wechsler Preschool & Primary Scale of Intelligence. Retrieved April 5, 2019, from https://www.pearsonassessments.com/store/usassessments/en/Store/Professional-Assessments/Cognition-%26-Neuro/Gifted-%26-Talented/Wechsler-Preschool-and-Primary-Scale-of-Intelligence-%7C-Fourth-Edition/p/100000102.html Google Scholar
Weiss, LG, Aylward, GP, Oakland, T. Bayley-III Clinical Use and Interpretation (Practical Resources for the Mental Health Professional). Elsevier Science Limited, 2010. Retrieved June 20, 2019, from http://www.sciencedirect.com/science/book/9780123741776 Google Scholar
Johnson, S, Moore, T, Marlow, N. Using the Bayley-III to assess neurodevelopmental delay: which cut-off should be used? Pediatr Res 2014; 75: 670–674. doi: 10.1038/pr.2014.10 CrossRefGoogle ScholarPubMed
Goldstone, AB, Baiocchi, M, Wypij, D, et al. The Bayley-III scale may underestimate neurodevelopmental disability after cardiac surgery in infants. Eur J Cardiothorac Surg doi: 10.1093/ejcts/ezz123 Google Scholar
Aylward, GP. Continuing issues with the Bayley-III: where to go from here. J Dev Behav Pediatr 2013; 34: 697–701.CrossRefGoogle Scholar
Anderson, PJ, Burnett, A. Assessing developmental delay in early childhood – concerns with the Bayley-III scales. Clin Neuropsychol 2017; 31: 371–381. doi: 10.1080/13854046.2016.1216518 CrossRefGoogle ScholarPubMed
Luttikhuizen dos Santos, ES, de Kieviet, JF, Königs, M, van Elburg, RM, Oosterlaan, J. Predictive value of the Bayley scales of infant development on development of very preterm/very low birth weight children: a meta-analysis. Early Hum Dev 2013; 89: 487–496. doi: 10.1016/j.earlhumdev.2013.03.008 CrossRefGoogle ScholarPubMed
Hack, M, Flannery, DJ, Schluchter, M, Cartar, L, Borawski, E, Klein, N. Outcomes in young adulthood for very-low-birth-weight infants. N Engl J Med 2002; 346: 149–157. doi: 10.1056/NEJMoa010856 CrossRefGoogle ScholarPubMed
Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16 (S1): 92–104. doi: 10.1017/S1047951105002398 CrossRefGoogle Scholar
Marlow, N, Wolke, D, Bracewell, MA, Samara, M. Neurologic and developmental disability at six years of age after extremely preterm birth. N Engl J Med 2005; 352: 9–19. doi: 10.1056/NEJMoa041367 CrossRefGoogle ScholarPubMed
Bhutta, AT, Cleves, MA, Casey, PH, Cradock, MM, Anand, KJS. Cognitive and behavioral outcomes of school-aged children who were born preterm: a meta-analysis. JAMA 2002; 288: 728–737. doi: 10.1001/jama.288.6.728 CrossRefGoogle ScholarPubMed
Nugent, JK, Keefer, CH, Minear, S, Johnson, LC, Blanchard, Y. Understanding Newborn Behavior and Early Relationships: The Newborn Behavioral Observations (NBO) System Handbook. Paul H Brookes Publishing, Towson, MD, 2007.Google Scholar