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Filling a significant gap in the cardiac ICU: implementation of individualised developmental care

  • Samantha C. Butler (a1), Kate Huyler (a2), Aditya Kaza (a3) and Chris Rachwal (a4)


Mortality rates among children with CHD have significantly declined, although the incidence of neurological abnormalities and neurodevelopmental impairment has increased. Research has focussed on outcomes, with limited attention on prevention and intervention. Although some developmental differences and challenges seen in children with CHD are explained by the cumulative effect of medical complications associated with CHD, many sequelae are not easily explained by medical complications alone. Although cardiac intensive care is lifesaving, it creates high levels of environmental and tactile stimulation, which potentially contribute to adverse neurodevelopmental outcomes. The therapeutic method of individualised developmental care, such as the Newborn Individualized Developmental Care and Assessment Program, provides early support and preventive intervention based on each child’s behavioural signals of stress, comfort, and strength. Implementing developmental care practices in a cardiac ICU requires a thoughtful and well-planned approach to ensure successful adoption of practice changes. This paper reviews how developmental care was introduced in a paediatric inpatient cardiac service through multidisciplinary collaborative staff education, clinician support, child neurodevelopment assessment, parent support, and research initiatives. Given the known risk for children with CHD, cardiac medical professionals must shift their focus to not only assuring the child’s survival but also optimising development through individualised developmental care in the cardiac ICU.


Corresponding author

Correspondence to: S. Butler, PhD, Boston Children’s Hospital, Enders Research Building Room 107, 300 Longwood Ave, Boston, MA 02115, United States of America. Tel: 617 355 7483; Fax: 617-730-0224; E-mail:


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1. Mahle, WT, Spray, TL, Wernovsky, G, Gaynor, JW, Clark, BJ. Survival after reconstructive surgery for hypoplastic left heart syndrome: a 15-year experience from a single institution. Circulation 2000; 102: Iii-136Iii-41.
2. Jacobs, JP, Quintessenza, JA, Burke, RP, et al. Analysis of regional congenital cardiac surgical outcomes in Florida using the Society of Thoracic Surgeons Congenital Heart Surgery Database. Cardiol Young 2009; 19: 360369.
3. Tweddell, JS, Hoffman, GM. Postoperative management in patients with complex congenital heart disease. Semin Thorac Cardiovasc Surg Pediatr Card Surg Annu 2002; 5: 187205.
4. Butler, S, Sadhwani, A, Stopp, C, et al. Neurodevelopmental assessment of infants with congenital heart disease in the early postoperative period. Second Annual Cardiac Neurodevelopmental Symposium, Cincinnati, OH, June 2016.
5. Marino, BS, Lipkin, PH, Newburger, JW, et al. Neurodevelopmental outcomes in children with congenital heart disease: evaluation and management: a scientific statement from the American Heart Association. Circulation 2012; 126: 11431172.
6. Mussatto, KA, Hoffmann, RG, Hoffman, GM, et al. Risk and prevalence of developmental delay in young children with congenital heart disease. Pediatrics. 2014; 133: e570e577.
7. Newburger, JW, Sleeper, LA, Bellinger, DC, et al. Early developmental outcome in children with hypoplastic left heart syndrome and related anomalies: the single ventricle reconstruction trial. Circulation 2012; 125: 20812091.
8. Wernovsky, G. Current insights regarding neurological and developmental abnormalities in children and young adults with complex congenital cardiac disease. Cardiol Young 2006; 16: 92104.
9. Snookes, SH, Gunn, JK, Eldridge, BJ, et al. A systematic review of motor and cognitive outcomes after early surgery for congenital heart disease. Pediatrics 2010; 125: e818e827.
10. 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: 5158.
11. Clouchoux, C, Du Plessis, A, Bouyssi-Kobar, M, et al. Delayed cortical development in fetuses with complex congenital heart disease. Cereb Cortex 2013; 23: 29322943.
12. 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.
13. Licht, DJ, Wang, J, Silvestre, DW, et al. Preoperative cerebral blood flow is diminished in neonates with severe congenital heart defects. J Thorac Cardiovasc Surg 2004; 128: 841849.
14. Miller, SP, McQuillen, PS, Hamrick, S, et al. Abnormal brain development in newborns with congenital heart disease. N Engl J Med 2007; 357: 19281938.
15. Anand, KJS, Scalzo, FM. Can adverse neonatal experiences alter brain development and subsequent behavior? Biol Neonate. 2000; 77: 6982.
16. Massaro, AN, Glass, P, Brown, J, et al. Neurobehavioral abnormalities in newborns with congenital heart disease requiring open-heart surgery. J Pediatr 2011; 158: 678681.e2.
17. Sood, E, Berends, WM, Butcher, JL, et al. Developmental care in North American Pediatric Cardiac Intensive Care Units: Survey of Current Practices. Adv Neonatal Care 2016; 16: 211219.
18. Peng, N-H, Chen, C-H, Bachman, J, et al. To explore the relationships between physiological stress signals and stress behaviors in preterm infants during periods of exposure to environmental stress in the hospital. Biol Res Nurs 2011; 13: 357363.
19. Smith, GC, Gutovich, J, Smyser, C, et al. Neonatal intensive care unit stress is associated with brain development in preterm infants. Ann Neurol 2011; 70: 541549.
20. Perlman, JM. Neurobehavioral deficits in premature graduates of intensive care – potential medical and neonatal environmental risk factors. Pediatrics 2001; 108: 13391348.
21. 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: 390398.
22. Winnicott, DW. The theory of the parent-infant relationship. Int J Psychoanal 1960; 41: 585.
23. Als, H. Program Guide – Newborn Individualized Developmental Care and Assessment Program (NIDCAP): An Education and Training Program for Health Care Professionals. NIDCAP Federation International: Boston, MA, 1986, revised 2015.
24. Silberstein, D, Litmanovitz, I. Developmental care in the neonatal intensive care unit according to Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Harefuah 2016; 155: 2731, 68, 67.
25. Als, H, Lawhon, G, Duffy, FH, McAnulty, GB, Gibes-Grossman, R, Blickman, JG. Individualized developmental care for the very low birthweight preterm infant: medical and neurofunctional effects. JAMA 1994; 272: 853858.
26. Als, H, Gilkerson, L, Duffy, FH, et al. A three-center randomized controlled trial of individualized developmental care for very low birth weight preterm infants: medical, neurodevelopmental, parenting and caregiving effects. J Dev Behav Pediatr 2003; 24: 399408.
27. Als, H, Duffy, F, McAnulty, GB, et al. Early experience alters brain function and structure. Pediatrics 2004; 113: 846857.
28. Buehler, DM, Als, H, Duffy, FH, McAnulty, GB, Liederman, J. Effectiveness of individualized developmental care for low-risk preterm infants: behavioral and electrophysiological evidence. Pediatrics 1995; 96: 923932.
29. Kleberg, A, Westrup, B, Stjernqvist, K, Lagercrantz, H. Indications of improved cognitive development at one year of age among infants born very prematurely who received care based on the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Early Hum Dev 2002; 68: 8391.
30. Westrup, B, Kleberg, A, von Eichwald, K, Stjernqvist, K, Lagercrantz, H. A randomized controlled trial to evaluate the effects of the Newborn Individualized Developmental Care and Assessment Program in a Swedish setting. Pediatrics 2000; 105: 6672.
31. Westrup, B, Böhm, B, Lagercrantz, H, Stjernqvist, K. Preschool outcome in children born very prematurely and cared for according to the Newborn Individualized Developmental Care and Assessment Program (NIDCAP). Acta Paediatr 2004; 93: 498507.
32. Moody, C, Callahan, TJ, Aldrich, H, Gance-Cleveland, B, Sables-Baus, S. Early initiation of Newborn Individualized Developmental Care and Assessment Program (NIDCAP) reduces length of stay: a quality improvement project. J Pediatr Nurs, 2017; 32: 5963.
33. Als, H, Duffy, FH, McAnulty, G, et al. NIDCAP improves brain function and structure in preterm infants with severe intrauterine growth restriction. J Perinatol 2012; 32: 797803.
34. Sannino, P, Giannì, ML, De Bon, G, et al. Support to mothers of premature babies using NIDCAP method: a non-randomized controlled trial. Early Hum Dev 2016; 95: 1520.
35. Kleberg, A, Hellström-Westas, L, Widström, A-M. Mothers’ perception of Newborn Individualized Developmental Care and Assessment Program (NIDCAP) as compared to conventional care. Early Hum Dev 2007; 83: 403411.
36. Nelson, AM, Bedford, PJ. Mothering a preterm infant receiving NIDCAP care in a level III newborn intensive care unit. J Pediatr Nurs 2016; 31: e271e282.
37. Ohlsson, A, Jacobs, SE. NIDCAP: a systematic review and meta-analyses of randomized controlled trials. Pediatrics 2013; 131: e881e893.
38. Mosqueda, R, Castilla, Y, Perapoch, J, Lora, D, López-Maestro, M, Pallás, C. Necessary resources and barriers perceived by professionals in the implementation of the NIDCAP. Early Hum Dev 2013; 89: 649653.
39. Als, H, Buehler, D, Gilkerson, L, Smith, K. Profile of the Nursery Environment and of Care Components. Template Manual, Part I. NIDCAP Federation International: Boston, MA, 1990, revised 2008.
40. Als, H. Toward a synactive theory of development: promise for the assessment of infant individuality. Infant Ment Health J 1982; 3: 229243.
41. Als, H, Butler, S, Kosta, S, McAnulty, G. The assessment of preterm infants’ behavior (APIB): furthering the understanding and measurement of neurodevelopmental competence in preterm and fullterm infants. Ment Retard Dev Disabil Res Rev 2005; 11: 94102.
42. Nugent, JK. Understanding Newborn Behavior & Early Relationships: The Newborn Behavioral Observations (NBO) System Handbook. Paul H. Brookes Publishing, Baltimore, MD, 2007.
43. Bayley, N. Bayley Scales of Infant and Toddler Development®, Bayley-III Screening Test, 3rd edn. Pearson, 2006. Harcourt Assessment, Inc. SanAntonio, TX.
44. Gooding, JS, Cooper, LG, Blaine, AI, Franck, LS, Howse, JL, Berns, SD. Family support and family-centered care in the neonatal intensive care unit: origins, advances, impact. Semin Perinatol, 2011: 20–28.
45. Gidding, SS, Dennison, BA, Birch, LL, et al. Dietary recommendations for children and adolescents a guide for practitioners: consensus statement from the American Heart Association. Circulation 2005; 112: 20612075.
46. Als, H, McAnulty, G. Developmental care guidelines for use in the Newborn Intensive Care Unit (NICU). Children’s Hospital, Boston, MA, 1998.


Filling a significant gap in the cardiac ICU: implementation of individualised developmental care

  • Samantha C. Butler (a1), Kate Huyler (a2), Aditya Kaza (a3) and Chris Rachwal (a4)


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