Objectives To describe growth patterns in infants with single ventricle physiology and determine factors influencing growth. Study design Data from 230 subjects enrolled in the Pediatric Heart Network Infant Single Ventricle Enalapril Trial were used to assess factors influencing change in weight-for-age z-score (Δz) from study enrollment (0.7 ± 0.4 months) to pre-superior cavopulmonary connection (SCPC) (5.1 ± 1.8 months, period 1), and pre-SCPC to final study visit (14.1 ± 0.9 months, period 2). Predictor variables included patient characteristics, feeding regimen, clinical center, and medical factors during neonatal (period 1) and SCPC hospitalizations (period 2). Univariate regression analysis was performed, followed by backward stepwise regression and bootstrapping reliability to inform a final multivariable model. Results Weights were available for 197/230 subjects for period 1 and 173/197 for period 2. For period 1, greater gestational age, younger age at study enrollment, tube feeding at neonatal discharge, and clinical center were associated with a greater negative Δz (poorer growth) in multivariable modeling (adjusted R2 = 0.39, p < 0.001). For period 2, younger age at SCPC and greater daily caloric intake were associated with greater positive Δz (better growth) (R2 = 0.10, p = 0.002). Conclusions Aggressive nutritional support and earlier SCPC are modifiable factors associated with a favorable change in weight-for-age z-score.

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Optimizing nutritional intake has been targeted as a key component of the National Pediatric Cardiology Quality Improvement Collaborative. This initiative has enabled the development of best practices that have the potential to mitigate poor growth in children with congenital heart defects.

Background Mothers whose infants are born with complex congenital heart disease (CCHD) experience stress during their infant’s hospitalization in a pediatric cardiac intensive care unit (PCICU). Objectives This study addressed 2 research questions: (1) What are the parental stressors for mothers whose infants with CCHD are in the PCICU? And (2) What are the relationships of trait anxiety and 3 parental stressors to the parental stress response of state anxiety in mothers whose infants with CCHD are in the PCICU? Methods This descriptive correlational study included 62 biological mothers of infants admitted to a PCICU within 1 month of birth who had undergone cardiac surgery for CCHD. Maternal and infant demographics and responses to the Parental Stressor Scale: Infant Hospitalization and the State-Trait Anxiety Inventory were collected at 3 major PCICUs across the United States. Results Mothers’ scores revealed that infant appearance and behavior was the greatest stressor, followed by parental role alteration, then sights and sounds. The combination of trait anxiety and parental role alteration explained 26% of the variance in maternal state anxiety. Mothers with other children at home had significantly higher state anxiety than did mothers with only the hospitalized infant. Conclusions Results from this study revealed factors that contribute to the stress of mothers whose infants are born with CCHD and are hospitalized in a PCICU. Nurses are in a critical position to provide education and influence care to reduce maternal stressors in the PCICU, enhance mothers’ parental role, and mitigate maternal state anxiety.

Background Developmental care practices across pediatric cardiac intensive care units (CICUs) have not previously been described. Purpose To characterize current developmental care practices in North American CICUs. Methods A 47-item online survey of developmental care practices was developed and sent to 35 dedicated pediatric CICUs. Staff members who were knowledgeable about developmental care practices in the CICU completed the survey. Findings/Results Completed surveys were received from 28 CICUs (80% response rate). Eighty-nine percent reported targeted efforts to promote developmental care, but only 50% and 43% reported having a developmental care committee and holding developmental rounds, respectively. Many CICUs provide darkness for sleep (86%) and indirect lighting for alertness (71%), but fewer provide low levels of sound (43%), television restrictions (43%), or designated quiet times (21%). Attempts to cluster care (82%) and support self-soothing during difficult procedures (86%) were commonly reported, but parental involvement in these activities is not consistently encouraged. All CICUs engage in infant holding, but practices vary on the basis of medical status and only 46% have formal holding policies. Implications for Practice Implementation of developmental care in the CICU requires a well-planned process to ensure successful adoption of practice changes, beginning with a strong commitment from leadership and a focus on staff education, family support, value of parents as the primary caregivers, and policies to increase consistency of practice. Implications for Research Future studies should examine the short- and long-term effects of developmental care practices on infants born with congenital heart disease and cared for in a pediatric CICU.

Parenting preterm infants in the first months after hospital discharge is challenging. Although preterm infants are considered to be difficult, preterm temperament at less than 3 months is unknown empirically. The purpose of this analysis was to investigate the 6-week temperament characteristics of preterm infants in comparison with standardized norms of full-term infants. The sample of 74 infants with gestational ages at birth between 24 and 32 weeks were enrolled in a study of preterm infant neurobehavioral outcomes. Mothers rated temperament at 6 weeks, 6 months, and 12 months of age (adjusted for prematurity). At 6 weeks the premature infants were significantly less rhythmic (regular), more distractible (soothable), less approaching (more withdrawing), and less intense than standardized norms for full-term infants. From these data we conclude that premature infants may be initially more challenging to parent. Temperament moderated over time but remained significantly lower in persistence at 12 months. Considerable change in temperament in the first 12 months of life may be influenced by biological and environmental factors common to the premature birth experience.

Objective To assess the association between early anthropometric measurements, device assisted feeding and early neurodevelopment in infants with complex congenital heart defects (CHD). Study design Bayley Scales of Infant Development II, were used to assess cognitive and motor skills in 72 infants with CHD at 6 and 12 months of age. Linear regression models were used to assess the association between mode of feeding and anthropometric measurements with neurodevelopment at 6 and 12 months of age. Results Of the 72 infants enrolled in the study, 34 (47%) had single ventricle physiology. The mean Mental Developmental Index (MDI) and Psychomotor Developmental Index (PDI) scores at 6 months of age were 92 ± 10 and 81 ± 14, respectively. At 12 months of age the mean MDI and PDI scores were 94 ± 12 and 80 ±16, respectively. Lower length-for-age z-score (p<0.01) and head circumference-for-age z-score (p<0.05) were independently associated with lower MDI at 6 months, and both increased hospital length of stay (p<0.01) and lower length-for-age z-score (p=0.04) were independently associated with lower MDI at 12 months. Device assisted feeding at 3 months (p=0.04) and lower length-for-age z-score (p<0.05) were independently associated with lower PDI at 6 months. Both lower weight-for-age z-score (p=0.04) and lower length-forage z-score (p=0.04) were independently associated with PDI at 12 months. Conclusion Neonates with complex CHD who required device assisted feeding and those with lower weight, length and head circumference z scores at 3 months were at risk for neurodevelopmental delay at 6 and 12 months of age.

Pediatricians should screen all preterm infants for feeding dysfunction during the first year.