Alt text on BCH Logo
professional voices

Developmental Care at Boston Children's Hospital

Individualized developmental care has been shown to improve developmental outcomes among critically-ill hospitalized infants, including infants with congenital heart defects (CHDs). In this article, psychologist Dr. Samantha Butler describes the pioneering work she and others have done in establishing developmental care as best practice in the hospital nursery.

Samantha Butler, PhD, Cardiac Neurodevelopmental Program, Boston Children's Hospital
5 min read
Share:

Developmental Risks Facing Infants with Complex Heart Defects

Infants with complex congenital heart defects require significant medical interventions, which can lead to postoperative complications, including neurodevelopmental issues.

The neurodevelopmental delay seen in children with heart defects is attributed to various factors, including the use of cardiopulmonary bypass, extracorporeal membrane oxygenation, and ventricular assist devices.

Environmental challenges in the CICU, such as noxious stimuli, painful procedures, and sleep disruption, also contribute to infant and parent stress, affecting brain development.

Developmental care aims to minimize the mismatch between the fragile infant brain's expectations and the stress and pain experienced in ICU environments. 

The Case for Developmental Care

Individualized developmental care (IDC), such as the Newborn Individualized Developmental Care and Assessment Program (NIDCAP), has been proven to improve outcomes for premature and critically ill infants by enhancing brain structure and function, along with improving behavioral outcomes that endure beyond infancy and into school age.

In addition, NIDCAP studies report benefits for medical parameters such as decreased length of stay, earlier oral feeding, and increased weight gain, along with increased family engagement at the bedside, attachment to their infant, and confidence in caregiving.

There is overwhelming evidence for the positive effects of NIDCAP on families and children in the ICU, but there is variability in the impact related to varying methods and intensity of developmental care delivered. 

Implementing Developmental Care

In an inpatient setting that provides NIDCAP, family members are regarded as their child’s primary caregivers and the central providers of ongoing support of their child’s clinical and developmental wellbeing.

NIDCAP promotes sleep by creating a calm and soothing environment by diminishing light, sound, and activity around the infant and family.

Beyond modification of the physical environment, specially educated and emotionally available health care providers (HCP) collaborate to promote family nurturing, respect and partnerships, and thereby reduce the patient and family’s stress.

This shifting of care from the typical task and discipline orientation to a relationship-based orientation is challenging and requires increased self-awareness of the professionals’ role from doer to facilitator and nurturer of growth and development.   

Special Considerations for the CICU

The extreme nature of the medical needs of the CICU population provide an extra layer of challenge with precarious patients, life threatening procedures, perilous lines and tubes, postsurgical obstacles, medical complications, extremely long hospital stays, comorbid medical conditions, large age range for patients, and traumatized families.

Despite such challenges, research has noted that education for the HCP, even in medically complex environments, can improve IDC practices in the ICU. 

Elements of Model Implementation in Our Nursery

An increasing number of hospitals have implemented a model of developmental care which involves staff education, multidisciplinary collaboration, neurodevelopmental assessment, parent support, and research initiatives.

Developmental rounds, both multidisciplinary and bedside, provide opportunities for patient assessment, caregiver education, and system change. Parent support is integral to the model, with an emphasis on involving parents in caregiving and decision-making. 

This content was reviewed by staff at Boston Children's Hospital.

Developmental services are best when they are local. Families local to Boston can receive developmental services from the Cardiac Neurodevelopmental Program. Families from other regions can click below to find local care.

Als, H. (1998). Developmental care in the newborn intensive care unit. Current Opinion in Pediatrics, 10(2), 138-142.https://journals.lww.com/co-pediatrics/_layouts/15/oaks.journals/downloadpdf.aspx?an=00008480-199804000-00004&casa_token=kHjNJudwS1AAAAAA:TuzpIOZpfxKehFi224eB_fe2f2xn6hWzi-C9--rEHpap7LlWqOmAb6qWFLh6mNBiMi3qd1uGLFDQqd_nsSuviw
Altimier, L., & Phillips, R. M. (2013). The neonatal integrative developmental care model: Seven neuroprotective core measures for family-centered developmental care. Newborn and Infant Nursing Reviews, 13(1), 9-22.https://www.sciencedirect.com/science/article/pii/S1527336912001997?casa_token=5JapPJgSwewAAAAA:E4dDW9XqEYTIu4-VNThJDboWTC2CxEQVgZGzLKdA9j5omULlmUhazaleXsOP48BsBBsWkzpd
Arter, S., Miller, E., Bakas, T., & Cooper, D. S. (2019). Psychometric testing of the developmental care scale for neonates with congenital heart disease. Cardiology in the Young, 29(6), 749-755.https://www.cambridge.org/core/services/aop-cambridge-core/content/view/C3DD57B3B9D4A968CF6894B87B1F4285/S1047951119000337a.pdf/div-class-title-psychometric-testing-of-the-developmental-care-scale-for-neonates-with-congenital-heart-disease-div.pdf
Brosig, C., Butcher, J., Butler, S., Ilardi, D. L., Sananes, R., Sanz, J. H., ... & Ware, J. (2014). Monitoring developmental risk and promoting success for children with congenital heart disease: Recommendations for cardiac neurodevelopmental follow-up programs. Clinical Practice in Pediatric Psychology, 2(2), 153.https://psycnet.apa.org/record/2014-24042-002
Burke, S. (2018). Systematic review of developmental care interventions in the neonatal intensive care unit since 2006. Journal of Child Health Care, 22(2), 269-286.https://journals.sagepub.com/doi/pdf/10.1177/1367493517753085?casa_token=q8irpVra-CcAAAAA:JBLeSF-vkizoF9Fxot6OPfMPA8cCLs7Em7UTC9cDAH7sMI6GLhU0wBYFz02VQBxs3B8EwskEpYw
Butler, S. C., Rofeberg, V., Smith-Parrish, M., LaRonde, M., Vittner, D. J., Goldberg, S., ... & Rachwal, C. M. (2024). Caring for hearts and minds: a quality improvement approach to individualized developmental care in the cardiac intensive care unit. Frontiers in Pediatrics, 12, 1384615.https://www.frontiersin.org/articles/10.3389/fped.2024.1384615/full
Byers, J. F. (2003). Components of developmental care and the evidence for their use in the NICU. MCN: The American Journal of Maternal/Child Nursing, 28(3), 174-180.https://journals.lww.com/mcnjournal/_layouts/15/oaks.journals/downloadpdf.aspx?an=00005721-200305000-00007&casa_token=DuN7GdBMj4AAAAAA:hlyebvdaBWQIEgYL-EqfOVRuHYlZZKeZMHp9-rlVIm-pakz-XGLCO6Weg1AuBpy4Otl47lrQjUTxHrBRcBs5tg
Craig, J. W., Glick, C., Phillips, R., Hall, S. L., Smith, J., & Browne, J. (2015). Recommendations for involving the family in developmental care of the NICU baby. Journal of Perinatology, 35(1), S5-S8.https://www.nature.com/articles/jp2015142
Kenner, C., & McGrath, J. M. (Eds.). (2021). Developmental care of newborns & infants. Lippincott Williams & Wilkins.https://books.google.com/books?hl=en&lr=&id=n6NMEAAAQBAJ&oi=fnd&pg=PP24&dq=developmental+care&ots=zyaQThXRe1&sig=01O-5XI2-CqHLndgs72zAe48adk#v=onepage&q=developmental%20care&f=false
LaRonde, M. P., Connor, J. A., Cerrato, B., Chiloyan, A., & Lisanti, A. J. (2022). Individualized family-centered developmental care for infants with congenital heart disease in the intensive care unit. American Journal of Critical Care, 31(1), e10-e19.https://c4mnp.childrenshospital.org/wp-content/uploads/2022/12/Neuro-Care-for-CHD-Infants.final_.proof_.pdf
Lisanti, A. J., Cribben, J., Connock, E. M., Lessen, R., & Medoff-Cooper, B. (2016). Developmental care rounds: an interdisciplinary approach to support developmentally appropriate care of infants born with complex congenital heart disease. Clinics in perinatology, 43(1), 147-156.https://www.perinatology.theclinics.com/article/S0095-5108(15)00131-1/abstract
Lisanti, A. J., Uzark, K. C., Harrison, T. M., Peterson, J. K., Butler, S. C., Miller, T. A., ... & American Heart Association Pediatric Cardiovascular Nursing Committee of the Council on Cardiovascular and Stroke Nursing; Council on Lifelong Congenital Heart Disease and Heart Health in the Young; and Council on Hypertension. (2023). Developmental care for hospitalized infants with complex congenital heart disease: a science advisory from the American Heart Association. Journal of the American Heart Association, 12(3), e028489.https://www.ahajournals.org/doi/full/10.1161/JAHA.122.028489
Lisanti, A. J., Vittner, D., Medoff-Cooper, B., Fogel, J., Wernovsky, G., & Butler, S. (2019). Individualized family-centered developmental care: an essential model to address the unique needs of infants with congenital heart disease. Journal of Cardiovascular Nursing, 34(1), 85-93.https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6283700/
Symington, A. J., & Pinelli, J. (2006). Developmental care for promoting development and preventing morbidity in preterm infants. Cochrane database of systematic reviews, (2).https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8962209/
VandenBerg, K. A. (2007). Individualized developmental care for high risk newborns in the NICU: a practice guideline. Early human development, 83(7), 433-442.https://www.sciencedirect.com/science/article/abs/pii/S0378378207000515
Westrup, B. (2007). Newborn Individualized Developmental Care and Assessment Program (NIDCAP)—family-centered developmentally supportive care. Early human development, 83(7), 443-449.https://nidcap.org/wp-content/uploads/2013/12/Westrup-2007-NIDCAP-family-centered.pdf
Related Resources

Want to Learn More?

Look below for related content, search resources by topic, or explore one of our custom guides.

Don't see what you're looking for? Let us know what you want to learn! We will try to add content to respond to your needs. Email CNPschedulingandquestions@childrens.harvard.edu

© 2025 All rights reserved