Developmental care pathway for hospitalised infants with CHD: on behalf of the Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative.

Infants and children born with CHD are at significant risk for neurodevelopmental delays and abnormalities. Individualised developmental care is widely recognised as best practice to support early neurodevelopment for medically fragile infants born premature or requiring surgical intervention after birth. However, wide variability in clinical practice is consistently demonstrated in units caring for infants with CHD. The Cardiac Newborn Neuroprotective Network, a Special Interest Group of the Cardiac Neurodevelopmental Outcome Collaborative, formed a working group of experts to create an evidence-based developmental care pathway to guide clinical practice in hospital settings caring for infants with CHD. The clinical pathway, "Developmental Care Pathway for Hospitalized Infants with Congenital Heart Disease," includes recommendations for standardised developmental assessment, parent mental health screening, and the implementation of a daily developmental care bundle, which incorporates individualised assessments and interventions tailored to meet the needs of this unique infant population and their families. Hospitals caring for infants with CHD are encouraged to adopt this developmental care pathway and track metrics and outcomes using a quality improvement framework.

Effect of Intercurrent Operation and Cerebral Oxygenation on Developmental Trajectory in Congenital Heart Disease.

BACKGROUND: Children with congenital heart disease are at increased risk of abnormal neurodevelopment (ND). Demographic and perioperative physiologic factors have both been associated with developmental outcome. The acute physiologic effect of a surgical procedure, anesthesia, and hospitalization may offset any potential advantage gained from anatomic correction and circulatory palliation. The specific risk/benefit balance on ND outcome of the insult of the operation, offset by the benefit of improved anatomy and physiology, has not been addressed. We therefore sought to identify interval procedural and physiologic factors assessed at outpatient ND evaluation visits that were associated with outcome. METHODS: The study included children with congenital heart disease at high risk for impaired ND performance with at least three ND assessments using the Bayley Scales of Infant Development-III during the first 3 years of life. The number of cardiac procedures, duration of hospitalization, feeding status, height, weight, and arterial, cerebral, and somatic oxygen saturations by near-infrared spectroscopy were recorded at each visit and used as predictors of language, motor, and cognitive composite scores and slopes (change over time) in general linear models. RESULTS: Data on 178 children derived from 632 visits (median, 4 visits/child) were analyzed, with ages at first and last assessment of 7.7 and 30.2 months. Fifty-one had 1 ventricle (1V), 88 had 2 ventricles, and 39 had genetic syndrome conditions. Motor performance increased with age in all diagnostic categories. Cognitive and language performance increased with age in 1V patients but exhibited no significant change in 2-ventricle and genetic syndrome groups. At the first visit, 1V patients performed less well than 2-ventricle patients in the motor domain, but the rate of improvement was higher for 1V patients; by 24 months, there were no differences, and both groups were normal in all domains. Performance in genetic syndrome patients was below normal in all domains at the first visit and did not improve. Higher arterial saturation and narrower arterial-cerebral and arterial-somatic near-infrared spectroscopy saturation differences were associated with better or improving motor performance. Incremental cardiopulmonary bypass time, cumulative hospital length of stay, and tube feedings were risk factors in all domains. Total and incremental times for deep hypothermic circulatory arrest, extracorporeal membrane oxygenation, total open and total surgical procedures, and birth weight were not risk factors. CONCLUSIONS: Patient physiologic status assessed by cerebral and somatic near-infrared spectroscopy is associated with ND performance. Incremental surgical procedures are not associated with ND performance when adjusted for cardiopulmonary bypass time and physiologic status. Treatment strategies that target improved physiologic status may also improve ND outcome.

Early identification of infants at risk for developmental disabilities.

Early identification of infants at risk for developmental delay is of the utmost importance to initiate appropriate intervention. Although early detection can be a challenge, the primary care practitioner is in the ideal position to recognize and refer these children. Early recognition requires an in-depth knowledge of the child's history, general physical examination, and developmental level and an understanding of the expected developmental precursors of a skill. Referral to appropriate interventional resources leads to a formalized developmental and neurologic evaluation. If necessary, the development of an interdisciplinary comprehensive plan of remediation can occur and a definitive diagnosis can be made. If no significant problem is found, a decision to provide expectant observation is warranted.