Developmental Care for Hospitalized Infants With Complex Congenital Heart Disease: A Science Advisory From the American Heart Association.

Developmental disorders, disabilities, and delays are a common outcome for individuals with complex congenital heart disease, yet targeting early factors influencing these conditions after birth and during the neonatal hospitalization for cardiac surgery remains a critical need. The purpose of this science advisory is to (1) describe the burden of developmental disorders, disabilities, and delays for infants with complex congenital heart disease, (2) define the potential health and neurodevelopmental benefits of developmental care for infants with complex congenital heart disease, and (3) identify critical gaps in research aimed at evaluating developmental care interventions to improve neurodevelopmental outcomes in complex congenital heart disease. This call to action targets research scientists, clinicians, policymakers, government agencies, advocacy groups, and health care organization leadership to support funding and hospital-based infrastructure for developmental care in the complex congenital heart disease population. Prioritization of research on and implementation of developmental care interventions in this population should be a major focus in the next decade.

Postnatal Cytokine Trajectories in Very Preterm Infants.

Inflammation often accompanies preterm birth and contributes to poor neurodevelopment in preterm infants. The purpose of this study was to describe postnatal cytokine trajectories among non-infected very preterm infants during the first weeks of life. Blood samples for cytokine analysis were collected weekly from infants born between 28 and 31 weeks post-menstrual age. We used linear mixed models to calculate slopes for each cytokine and allowed the slopes to differ by infant biological sex and post-menstrual age at birth. Levels of interleukin-6, interleukin-8, and interleukin-1 receptor antagonist decreased, on average, during the neonatal period. Monocyte chemoattractant protein-1 levels increased over time, and tumor necrosis factor-alpha levels were stable. Interleukin-6 and interleukin-8 slopes differed by post-menstrual age at birth but were unaffected by infant sex. Knowledge of average cytokine trajectories may be useful in identifying infants with unresolving inflammation that increases their risk for poor neurodevelopment.

Screening and Evaluation of Neurodevelopmental Impairments in Infants Under 6 Months of Age with Congenital Heart Disease.

Clinical evaluation of neurodevelopmental impairments before 6 months of age is needed in congenital heart disease (CHD) to promote early referral to developmental interventions. The objective was to identify the risk of cerebral palsy (CP) and to compare neurodevelopment outcomes in infants with and without CHD. In a longitudinal study, 30 infants with CHD and 15 infants without CHD were assessed at 1 month, 3 months, and 6 months of age. Included measures were General Movement Assessment (GMA), Test of Infant Motor Performance (TIMP) and the Bayley Scale of Infant Development, third edition (Bayley-III), selected to identify the risk of CP, document neurodevelopmental impairments and infants' eligibility for early intervention services. Abnormal GMA categories were found in the CHD group where 48% had poor repertoire and 15% were at high risk of CP. At 3 months of age, CHD group had significantly lower TIMP scores compared to infants without CHD [t(41) = 6.57, p = 0.01]. All infants in the study had higher Bayley-III scores at 6 months than at 3 months of age. Infants with CHD had lower gross motor, fine motor and cognitive Bayley-III scores compared to their peers without CHD. Over time infants without CHD outperformed the CHD group in the gross motor skills [F(1,41) = 11.76, p = .001]. Higher prevalence of abnormal GMs, lower TIMP and Bayley-III were found in infants with single ventricle physiology compared to two-ventricle physiology. The risk of CP exists in infants with CHD, and these infants have worse outcomes compared to their peers without CHD. These differences are intensified in the single ventricle population.Clinical Trial Registration National Institute of Health, Unique identifier: NCT03104751; Date of registration-April 7, 2017.

Effects of Massage on Postoperative Pain in Infants With Complex Congenital Heart Disease.

BACKGROUND: Pain management is an essential component of care for pediatric patients following surgery. Massage reduces self-reported postoperative pain in adults with heart disease but has received little attention in postoperative pediatric patients with complex congenital heart disease (CCHD). OBJECTIVES: The aim of the study was to evaluate the effectiveness of massage compared to a rest period on postoperative pain scores and physiological responses in infants with CCHD. METHODS: We used a two-group randomized clinical trial design with a sample of 60 infants with CCHD between 1 day and 12 months of age following their first cardiothoracic surgery. Both groups received standard postoperative care. Group 1 received a daily 30-minute restriction of nonessential caregiving (quiet time), and Group 2 received a daily 30-minute massage. Interventions continued for seven consecutive days. Pain was measured six times daily using the Face, Legs, Activity, Cry, Consolability Pain Assessment Tool (FLACC). Average daily doses of analgesics were recorded. Heart rates (HRs), respiratory rates (RRs), and oxygen saturations (SpO2) were recorded continuously. Daily averages, pre- and postintervention FLACC scores, and physiological responses were analyzed using descriptive statistics, generalized linear mixed models repeated measures, latent growth models, and/or regression discontinuity analysis. Fentanyl-equivalent narcotic values were used as a time-varying covariate. RESULTS: Adjusted pain scores were lower for the massage group on all days except Day 7. Overall, there were no group effects on level of pain or differential rate of change in pain. However, the massage group had lower daily pain scores with small to medium effect size differences, largest at Days 4, 5, and 6, and lower average daily HR and RR. There was little difference between groups in SpO2. Infants demonstrated immediate effects of massage, with HR and RR decreasing and oxygen saturations increasing. DISCUSSION: This study provides beginning evidence that postoperative massage may reduce pain and improve physiological parameters in infants with congenital heart disease. This nonpharmacological adjunct to pain management may provide a particular benefit for this population by reducing demand on the cardiorespiratory system.

Feasibility Case Series of Environment and Sleep in Infants With Congenital Heart Disease.

BACKGROUND: Developmental delay is a significant concern for infants born with complex congenital heart disease (CCHD). Environmental exposures (e.g., excessive light and sound exposure, sleep disruption) in neonatal intensive care are associated with poor developmental outcomes. However, the environmental experience of newborn infants in cardiac care is unknown. OBJECTIVES: The aim of the study was to examine the feasibility of continuous environmental data collection (i.e., light and sound exposure, sleep pattern) in pediatric cardiac care units and describe the environmental experience of three hospitalized infants with CCHD. METHODS: A case series of three infants undergoing cardiac surgery for CCHD within the first month of life was performed. Measures of light, sound, and sleep were collected in 24-hour periods on three to four separate hospital days. For each day, light and sound meters were attached to the hospital bed, and an actigraphy band was placed on the infant's lower leg to measure sleep/wake states. Feasibility of continuous environmental data collection was assessed through acceptability of data collection for families and clinical staff, usability of data collection equipment for research staff, and study protocol adherence. Descriptive statistics were used to calculate the count and duration of episodes of excessive light and sound exposure, hourly levels of light and sound exposure, total sleep time, duration of individual sleep episodes, and number of arousals from sleep. RESULTS: Although continuous environmental data collection was generally acceptable to families and clinical staff, multiple usability issues were identified by research staff, and study protocol adherence was variable. Missing data were a major limitation. User error during equipment setup was a main contributor to missing data. Infants experienced frequent episodes of sound exposure above recommended maximum levels, whereas light exposure generally remained below recommended maximum levels. Infant sleep patterns were highly fragmented, with frequent arousals and short duration of individual sleep episodes. DISCUSSION: Lessons learned during preliminary data collection with the infants in this case series will inform methods and prevent missing data in future, large-scale studies of this vulnerable, hard-to-recruit population. Data reflect a cardiac care environment characterized by excessive sound exposure and highly disrupted sleep. These environmental stressors may affect developmental outcomes in infants with CCHD.

Inflammatory predictors of neurobehavior in very preterm infants.

BACKGROUND: Preterm infants are at risk for impaired neurodevelopment. Inflammation may be an important modifiable mediator of preterm birth and neurodevelopmental impairment, but few studies have examined longitudinal measures of inflammation. OBJECTIVE: To determine the relationship between longitudinal measures of inflammation and neurobehavior in very preterm infants. STUDY DESIGN: Non-experimental, repeated measures cohort study. METHODS: Very preterm infants were enrolled between October 2017 and December 2018. Blood was collected weekly until 35 weeks post-menstrual age for the quantification of plasma cytokines. Neurobehavior was assessed at 35 weeks post-menstrual age using the cluster scores for motor development and vigor and alertness/orientation from the Neurobehavioral Assessment of the Preterm Infant. Multiple linear regression models with robust standard errors were used to analyze the data. Average levels of individual cytokines, cytokine trends, and composite scores were used as measures of inflammation. RESULTS: Seventy-three infants were enrolled in the study. Interleukin-1 receptor antagonist was associated with motor development and vigor scores. Interleukin-6 was associated with alertness/orientation scores. Tumor necrosis factor-alpha and composite scores of inflammation were associated with motor development and vigor and alertness/orientation scores. There were interactions with post-menstrual age at birth and infant sex. CONCLUSION: Inflammation may be an important predictor of short-term neurobehavior in preterm infants. Interleukin-1 receptor antagonist, interleukin-6, and tumor necrosis factor-alpha are key cytokines for studies of preterm infants, but composite scores may be a better measure of inflammation than individual cytokines. Inflammation can be damaging to the immature brain and may be a specific target for future interventions to improve outcomes.

A Case Study of the Environmental Experience of a Hospitalized Newborn Infant With Complex Congenital Heart Disease.

BACKGROUND: Infants with complex congenital heart disease are at high risk for developmental delays. Although the etiology of these delays is multifactorial, the physical environment may be a contributory factor. Extensive studies have been conducted in neonatal intensive care units measuring environmental influences on development, resulting in policy and practice changes. Cardiothoracic intensive care units and cardiac step-down units are new environments in which newborns with heart disease receive care. No environmental studies have been conducted in units caring for newborn infants recovering from cardiac surgery. OBJECTIVE: The aim of this study is to examine the environmental experience of a newborn infant with heart disease after surgical intervention within the first month of life. METHODS: Measurements of illumination, sound levels, and sleep were recorded on 1 infant for 2 consecutive postoperative days in the cardiothoracic intensive care unit and 2 consecutive days in the step-down unit. RESULTS: Although average daily noise exposure remained below recommended guidelines on 3 of 4 days, the infant experienced intermittent periods of excessive noise (≥55 dBA) during 59 of 87 hours and 110 episodes of acute noise events greater than 70 dBA. Average daily light exposure was below the recommended guidelines. However, light levels were more than twice the recommended levels at multiple points daily. For each of the 4 observation days, the infant experienced 66 to 102 awakenings during sleep, and sleep durations were less than 30 minutes 90% of the time. CONCLUSIONS: This study provides the first report of potential environmental stressors in newborn infants cared for in cardiac specialty units. Excessive levels of light and noise as well as frequent interruptions for medical and nursing care may contribute to disorganized sleep and increased patient distress and may impact subsequent neurodevelopment. Studies are needed to identify potentially adverse aspects of the intensive caregiving environment for newborn infants who have undergone cardiac surgery.

A Case Study of Infant Physiologic Response to Skin-to-Skin Contact After Surgery for Complex Congenital Heart Disease.

BACKGROUND: Infants with complex congenital heart disease requiring surgical intervention within the first days or weeks of life may be the most seriously ill infants needing intensive nursing and medical care. Skin-to-skin contact (SSC) is well accepted and practiced as a positive therapeutic intervention in premature infants but is not routinely offered to infants in cardiac intensive care units. The physiologic effects of SSC in the congenital heart disease population must be examined before recommending incorporation of SSC into standard care routines. OBJECTIVE: The purpose of this case study was to describe the physiologic response to a single session of SSC in an 18-day-old infant with hypoplastic left heart syndrome. METHODS: Repeated measures of heart rate, respiratory rate, oxygen saturation, blood pressure, and temperature were recorded 30 minutes before SSC, during SSC (including interruptions for bottle and breast feedings), and 10 minutes after SSC was completed. RESULTS: All physiologic parameters were clinically acceptable throughout the 135-minute observation. CONCLUSION: This case study provides beginning evidence that SSC is safe in full-term infants after surgery for complex congenital heart disease. Further research with a larger sample is needed to examine the effects of SSC on infant physiology before surgery and earlier in the postoperative time period as well as on additional outcomes such as length of stay, maternal-infant interaction, and neurodevelopment.