Neonatal Cardiac Surgery Research Articles

Surgeries in Neonates and Small-Weight Babies With Congenital Heart Diseases: Challenges and Gratification

Background: Complex cardiac surgery in neonates and small-weight babies is a challenge. In addition to the surgical expertise and skill required, accurate diagnosis, management of anesthesia, perfusion, and postoperative critical care are equally challenging. Methods: We have analyzed the data of 4 different examples of complex cardiac surgery in neonates and small-weight babies from February 2012 to July 2019 in our unit. The first group included 118 cases of arterial switch operations for transposition of great arteries with and without ventricular septal defect (group 1). The second group included 52 patients of aortic arch repair from midline using selective cerebral perfusion avoiding total circulatory arrest (group 2). The third group included 75 patients of repair of coarctation of aorta from thoracotomy using the modified end-to-side technique (group 3). The fourth group included 40 neonates and small-weight babies who underwent repair of total anomalous pulmonary venous connection (group 4). Results: In group 1, there was hospital mortality in 6 babies. In group 2, there was no hospital mortality. In group 3, there was 1 hospital death; in group 4, there were 5 hospital deaths. The major contributing cause of death was respiratory or blood-borne infection causing respiratory issues leading to prolonged ventilation. Left diaphragm palsy contributed to morbidity and eventual death in 2 babies. Only 2 patients required tracheostomy to wean off the ventilator. Conclusions: In the present day, it is possible to achieve satisfactory results with acceptable mortality in neonatal cardiac surgery. Morbidity associated with very early repair in neonatal age, low weight, and infection-related issues is manageable with good outcomes.

Implementation of a "threat and error" model in complex neonatal cardiac surgery patients to identify quality improvement opportunities.

Neonates undergoing surgery for congenital heart disease are vulnerable to adverse events. Conventional quality improvement processes centring on mortality and significant morbidity leave a gap in the identification of systematic processes that, though not directly linked to an error, may still contribute to adverse outcomes. Implementation of a multidisciplinary "flight path" process for surgical patients may be used to identify modifiable threats and errors and generate action items, which may lead to quality improvement. A retrospective review of our neonatal "flight path" initiative was performed. Within 72 hours of a cardiac surgery, a meeting of the multidisciplinary patient care team occurs. A "flight path" is generated, graphically illustrating the patient's hospital course. Threats, errors, or unintended consequences are identified. Action items are generated, and a working group is formed to address the items. A patient's flight path is updated weekly until discharge. The errors and action items are logged into a database, which is analysed quarterly to identify trends. Thirty one patients underwent flight path review over a 1-year period; 22.5% (N=7) of patients had an error-free "flight." Eleven action items were generated - four from identified errors and seven from identified threats. Nine action items were completed. Flight path reviews of congenital cardiac patients can be generated with few resources and aid in the detection of quality improvement opportunities. The regular multidisciplinary meetings that occur as a part of the flight path review process can promote inter-professional teamwork.

Prophylactic Peritoneal Dialysis After the Arterial Switch Operation: A Retrospective Cohort Study

Fluid overload contributes to poor outcomes after neonatal cardiac surgery. The optimal strategy to mitigate fluid overload related morbidity is unknown. The utility of prophylactic peritoneal dialysis remains controversial. We aimed to assess the impact of prophylactic peritoneal dialysis on outcomes and hypothesized that prophylactic dialysis would be associated with less fluid overload and improved outcomes in neonates undergoing the arterial switch operation. A single-center retrospective analysis of 41 consecutive neonates between June 2010 and March 2016 undergoing the arterial switch operation was performed. Fluid balance and other outcomes were compared between those who received peritoneal dialysis (n= 25) and those who did not (n= 16). Demographics were similar between groups, except cardiopulmonary bypass duration, which was significantly longer in the dialysis group (125 ± 20 minutes) compared with the no dialysis group (109 ± 15 minutes; P= .01). Median time to dialysis initiation was 9.1 hours (interquartile range, 7 to 9.8) and median time to termination from cardiac intensive care unit admission was 58.7 hours (interquartile range, 44 to 76.1). Cumulative fluid balance in the dialysis group was significantly more negative compared with the no dialysis group across all 7 postoperative days. In the multivariable analysis, use of dialysis was associated with a 42% reduction in hours of mechanical ventilation (relative risk 0.58; 95% confidence interval, 0.4 to 0.85; P < .01) and a 34% reduction in intensive care unit length of stay (relative risk 0.66; 95% confidence interval, 0.47 to 0.94; P= .02). Utilization of dialysis was associated with lower hospital costs (P < .01). Prophylactic peritoneal dialysis after the arterial switch operation is associated with improved postoperative outcomes without increased hospital costs (Graphical Abstract).

Considerations for Pediatric Heart Programs During COVID-19: Recommendations From the Congenital Cardiac Anesthesia Society.

Considerations for Pediatric Heart Programs During COVID-19: Recommendations From the Congenital Cardiac Anesthesia Society.

Paucity of renal follow-up by school age after neonatal cardiac surgery.

There are little data about renal follow-up of neonates after cardiovascular surgery and no guidelines for long-term renal follow-up. Our objectives were to assess renal function follow-up practice after neonatal cardiac surgery, evaluate factors that predict follow-up serum creatinine measurements including acute kidney injury following surgery, and evaluate the estimated glomerular filtration rate during follow-up using routinely collected laboratory values. Two-centre retrospective cohort study of children 5-7 years of age with a history of neonatal cardiac surgery. Univariable and multivariable analyses were performed to determine factors associated with post-discharge creatinine measurements. Glomerular filtration rate was estimated for each creatinine using a height-independent equation. Seventeen of 55 children (30%) did not have any creatinine measured following discharge after surgery until the end of study follow-up, which occurred at a median time of 6 years after discharge. Of the 38 children who had the kidney function checked, 15 (40%) had all of their creatinine drawn only in the context of a hospitalisation or emergency department visit. Acute kidney injury following surgery did not predict the presence of follow-up creatinine measurements. A large proportion of neonates undergoing congenital heart repair did not have a follow-up creatinine measured in the first years following surgery. In those that did have a creatinine measured, there did not appear to be any identified pattern of follow-up. A follow-up system for children who are discharged from cardiac surgery is needed to identify children with or at risk of chronic kidney disease.

Association of Neurodevelopmental Outcomes With Environmental Exposure to Cyclohexanone During Neonatal Congenital Cardiac Operations

Cyclohexanone is an industrial solvent used as a coupling agent in medical plastics. Perioperative exposure to cyclohexanone could play a role in lower scores on measures of neurodevelopmental outcomes after neonatal cardiac operations. To examine the presence and association of serum cyclohexanone level with neonatal cardiac operations and neurodevelopmental outcomes. This ad hoc secondary analysis used data from the Corticosteroid Therapy in Neonates Undergoing Cardiopulmonary Bypass randomized clinical trial. The cohort included neonates younger than 31 days and with at least 37 weeks postgestational age at surgical treatment who were enrolled at a single center between June 1, 2012, and October 31, 2016, and who had completed a neurodevelopmental assessment at age 12 months. Data were analyzed from July 8 to August 20, 2019. Serum cyclohexanone and its metabolites were measured preoperatively (prior to skin incision), postoperatively (immediately after the surgical procedure was completed), and 12 hours postoperatively. Cyclohexanone and the molar sum of its metabolites were examined at each point and as a geometric mean of all 3 points. Neurodevelopment was assessed at age 12 months with the Bayley Scales of Infant and Toddler Development III, assessing cognitive, language, and motor function composite scores standardized to a population mean (SD) of 100 (15). Linear regression models were used to determine covariate-adjusted differences in 12-month cognitive, language, and motor composite scores per interquartile range increase in cyclohexanone level or summed metabolite molar concentrations. Among 85 included neonates, mean (SD) age at surgical treatment was 9.7 (5.3) days, 49 (58%) were boys, and 54 (64%) underwent corrective repair. Mean (SD) Bayley Scales of Infant and Toddler Development III composite scores were 108.2 (12.2) for cognitive function, 104.7 (11.0) for language function, and 94.7 (15.7) for motor function. Median (interquartile range) cyclohexanone levels increased approximately 3-fold from immediately prior to surgical treatment to immediately after surgical treatment (572 [389-974] vs 1744 [1469-2291] μg/L; P = .001). In adjusted analyses, higher geometric mean cyclohexanone levels were associated with significantly lower composite scores for cognitive (-4.23; 95% CI, -7.39 to -1.06; P = .01) and language (-3.65; 95% CI, -6.41 to -0.88; P = .01) function. The difference in composite scores for motor function among infants with higher geometric mean cyclohexanone levels was not statistically significant(-3.93, 95% CI: -8.19 to 0.33, P = .07). The findings of this secondary analysis of a randomized clinical trial suggest that infants who underwent neonatal cardiac surgical treatment with cardiopulmonary bypass had substantial cyclohexanone levels, which were associated with adverse neurodevelopmental function at age 12 months. ClinicalTrials.gov identifier: NCT01579513.

Determining risk factors of acute kidney injury after neonatal cardiac surgery

Determining risk factors of acute kidney injury after neonatal cardiac surgery

A retrospective comparison of phenobarbital and levetiracetam for the treatment of seizures following cardiac surgery in neonates

To compare the safety and efficacy of phenobarbital and levetiracetam in a cohort of neonates with seizures following cardiac surgery. We performed a retrospective single-center study of consecutive neonates with electrographically confirmed seizures managed with antiseizure medication after cardiac surgery from June 15, 2012 to December 31, 2018. We compared the safety and efficacy of phenobarbital and levetiracetam as first-line therapy. First-line therapy was phenobarbital in 31 neonates and levetiracetam in 22 neonates. Phenobarbital was associated with more adverse events (P=.006). Eight neonates (14%) experienced an adverse event related to phenobarbital use, including seven with hypotension and one with respiratory depression. No adverse events were reported with levetiracetam use. The cessation of electrographic seizures was similar in both groups, including 18 neonates (58%) with seizure cessation after phenobarbital and 12 neonates (55%) with seizure cessation after levetiracetam (P=1.0). The combined cessation rates of phenobarbital and levetiracetam when used as first- or second-line therapy were 58% and 47%, respectively (P=.47). Phenobarbital was associated with more adverse events than levetiracetam, and the two drugs were equally but incompletely effective in treating electrographically confirmed seizures in neonates following cardiac surgery. Given its more acceptable safety profile and potential noninferiority, levetiracetam may be a reasonable option for first-line therapy for treatment of seizures in this population. Further prospective studies are needed to confirm these results.

Surgical and Psychosocial Predictors of Mental Health in Parents of Children With Cardiac Admissions

This study investigated factors associated with long-term mental health outcomes of parents of children with a cardiac illness. The objective of the study was to investigate the hypothesis that acute mental health status and psychosocial risk factors (eg, acute stress reactions, quality of life) would be more strongly associated with long-term mental health outcomes than demographic, diagnostic, morphology, or procedure-related factors. Participants were 31 parents of children who underwent cardiac operations in a pediatric hospital. Acute mental health status, psychosocial risk, demographic information, morphology, and procedure-related data were collected within the first 4 weeks of the child's hospital admission. Mental health outcomes, including symptoms of posttraumatic stress, depression, anxiety, and general stress, were collected at a 2-year follow-up. Acute mental health status and psychosocial risk, specifically acute stress reactions, contributed significantly to parent mental health, explaining 44% of the variance in the parent posttraumatic stress scores (P< .001) and 40% in depression scores (P < .001). Morphology and procedure-related factors (eg, prolonged mechanical ventilation) explained a further 12% of the variance in parent posttraumatic stress scores (P= .015) and a further 13% in depression scores (P= .014). No associations were found with demographic factors. Results suggest that acute mental health status is more strongly related to parent mental health outcomes than morphology and procedure-related variables in children undergoing neonatal cardiac operations and that demographic variables are not associated with mental health outcomes.

Non-invasive Monitoring of Cerebral Self-regulation in Perioperative Neonatal Cardiac Surgery

Non-invasive Monitoring of Cerebral Self-regulation in Perioperative Neonatal Cardiac Surgery

Are boys and girls just different? Gender differences in the Movement Assessment Battery for Children, 2nd edition (M ABC-2) suggests that they are.

The second edition of the Movement Assessment Battery for Children (M ABC-2) is a standardised, norm referenced assessment that is frequently used by therapists to identify children with motor difficulties. The norms for the M ABC-2 were derived from a sample of children in the United Kingdom (UK) and are combined across the age groups for boys and girls. The aims of this research were to investigate gender differences in the performance of 8- and 9-year-old Australian children and if the norms in our cohort differed from UK-based M ABC-2 norms. Children aged 8 or 9years of age who underwent major neonatal cardiac or non-cardiac surgery and healthy controls were assessed using the M ABC-2 as part of the Development After Infant Surgery (DAISy) study. There were statistically significant differences in the scores for boys and girls aged 8- and 9-years old on the M ABC-2. Girls performed better than boys in manual dexterity and on total standard scores. Our control group compared to the assessment norms scored significantly poorer in manual dexterity, aiming and catching and total standard scores. Caution should be used when interpreting the results of the M ABC-2 for Australian 8- and 9-year olds. Contemporary Australian, gender-specific M ABC-2 norms should be considered. Further research is required to investigate gender differences and differences in performance of Australian children compared to the assessment norms in other age groups on the M ABC-2.

Early Outcomes after Cardiac Surgery in Neonates and Infants in India

Early Outcomes after Cardiac Surgery in Neonates and Infants in India

Early Outcomes of Neonatal Cardiac Surgery in India

To assess outcomes and factors influencing outcomes in neonates requiring cardiac surgery in India. This study reports on review of hospital data from a tertiary care cardiac surgical institute from January-2009 to December-2015. A total of 200 neonates were included; of them, 5% of the cases were antenatally diagnosed and most of them had unmonitored transport (111, 55.5%). The overall mortality rate was 13.5%, (n=27) and 178 (89%) underwent complete defect repair. There was a significant association of mortality with shock, the number of inotropes, intra-operative procedure, residual lesion, aortic cross-clamp and deep hypothermic circulatory arrest time (all P<0.05). Logistic regression analysis showed ventilation duration, cardiac-bypass time, shock, and residual cardiac lesion as independent predictors of mortality. Cardiac defects were found to have late detection and most transports were unmonitored. Complete surgical repair and shorter cardiac bypass time can potentially improve neonatal cardiac surgical outcomes.

539: Postpartum depression in women with pregnancies complicated by a fetal congenital cardiac anomaly

To investigate factors contributing to postpartum depression (PPD) in pregnancies complicated by a fetal congenital cardiac anomaly. We reviewed the medical records of all pregnancies complicated by a fetal congenital cardiac anomaly who received prenatal, intrapartum and postpartum care at a single academic center between October 2016 and October 2018. Women who completed the Edinburgh Postnatal Depression scales (EPDS), a standard assessment in our center, at their routine 6-week postpartum appointment were included in the analysis. PPD was defined as an EPDS score ≥10. Maternal sociodemographic, obstetric, and neonatal data were compared between women with and without PPD. Out of 235 women referred to our center due to a fetal congenital cardiac anomaly, we identified 45 women with complete prenatal, intrapartum, and neonatal data including EPDS scores. The EPDS was completed a median of 43 days postpartum (IQR 42-49) with a median score of 4 (IQR 1-9). Eleven women (24%) were identified as having PPD. There were no differences in sociodemographic factors, or a history of depression between those with and without PPD (Table 1). Moreover, women with obstetric complications including PPROM, PTL, chorioamnionitis, fetal growth restriction, cesarean delivery or postpartum hemorrhage did not have increased rates of PPD. When analyzing the effect of neonatal factors on PPD, the rates of neonatal intubation, ECMO, or surgery in first 6 weeks were similar between women with or without PPD; however, the frequency of PPD was significantly higher among women whose infant had a plan for surgery at the time of EPDS testing (70.0 vs. 24.2%, p=0.02) (Table 2). In pregnancies complicated by fetal congenital cardiac anomaly, women with a plan for neonatal cardiac surgery at the time of their postpartum appointment are at a significantly higher risk for postpartum depression.View Large Image Figure ViewerDownload Hi-res image Download (PPT)

Magnetic Resonance-Based Diagnostics for Bleeding Assessment in Neonatal Cardiac Surgery

Infants undergoing a cardiac operation are at high risk for postsurgical bleeding. To date, there are no highly predictive models for postsurgical bleeding in this population. This study's objective was to assess the predictive ability of T2 magnetic resonance (T2MR). T2MR uses magnetic resonance to detect clot formation characteristics on a small blood sample and provides hemostatic indicators that can assess bleeding risk. This prospective, single-institution study enrolled 100 patients younger than 12 months old undergoing a cardiac operation from April 27, 2015, to September 21, 2016. The primary end point was postsurgical bleeding within 24 hours after the procedure. T2MR data were modeled with a binary recursive partitioning algorithm with randomized cross-validation. The tight clot metric produced the highest univariate discrimination of bleeding (receiver operator characteristic curve, 0.64; classification accuracy, 72%), and along with the platelet function metric, demonstrated highest relative importance based on Gini index splitting (Salford Systems, San Diego, CA). Multivariate modeling with cross-validation showed mean receiver operator characteristic curve area of 0.74 and classification accuracy of 82%. T2MR tight clot and platelet function metrics were associated with bleeding events.

Transfusing Platelets During Bypass Rewarming in Neonates Improves Postoperative Outcomes: A Randomized Controlled Trial.

In neonates, transfusion of platelets after hemodilution from cardiopulmonary bypass (CPB) has been standard. We hypothesize that platelet administration during the rewarming phase before termination of CPB would reduce coagulopathy, enhance hemostasis, reduce transfusion, and improve postoperative outcomes after neonatal cardiac surgery. A prospective, randomized trial was performed in 46 neonates. Controls received platelets only at the end of bypass with other blood products to assist in hemostasis. The treatment group received 10 mL/kg of platelets during the rewarming phase of bypass after cross-clamp release. After protamine, transfusion and perioperative management protocols were identical and constant among groups. Two neonates in each group were excluded secondary to postoperative need for extracorporeal support. Controls (n = 21) and treatment patients (n = 21) were similar in age, weight, case complexity, associated syndromes, single ventricle status, and CPB times. Compared to controls, the treatment group required 40% less postbypass blood products (58 ± 29 vs 103 ± 80 mL/kg, P = .04), and case completion time after protamine administration was 28 minutes faster (P = .016). The treatment group required fewer postoperative mediastinal explorations for bleeding (P = .045) and had a lower fluid balance (P = .04). The treatment group had shorter mechanical ventilation (P = .016) and length of intensive care unit times (P = .033). There were no 30-day mortalities in either group. Platelet transfusion during the rewarming phase of neonatal cardiac surgery was associated with reduced bleeding and improved postoperative outcomes, compared to platelets given after coming off bypass. Further studies are necessary to understand mechanisms and benefits of this strategy.

Nitrite Improves Heart Regeneration in Zebrafish.

Aims: Nitrite is reduced to nitric oxide (NO) under physiological and pathological hypoxic conditions to modulate angiogenesis and improve ischemia-reperfusion injury. Although adult mammals lack the ability to regenerate the heart after injury, this is preserved in neonates and efforts to reactivate this process are of great interest. Unlike mammals, the adult zebrafish maintain the innate ability to regenerate their hearts after injury, providing an important model to study cardiac regeneration. We thus explored the effects of physiological levels of nitrite on cardiac and fin regeneration and downstream cellular and molecular signaling pathways in response to amputation and cryoinjury. Results: Nitrite treatment of zebrafish after ventricular amputation or cryoinjury to the heart in hypoxic water (∼3 parts per million of oxygen) increases cardiomyocyte proliferation, improves angiogenesis, and enhances early recruitment of thrombocytes, macrophages, and neutrophils to the injury. When tested in a fin regeneration model, neutrophil recruitment to the injury site was found to be dependent on NO. Innovation: This is the first study to evaluate effects of physiological levels of nitrite on cardiac regeneration in response to cardiac injury, with the observation that nitrite in water accelerates zebrafish heart regeneration. Conclusion: Physiological and therapeutic levels of nitrite increase thrombocyte, neutrophil, and macrophage recruitment to the heart after amputation and cryoinjury in zebrafish, resulting in accelerated cardiomyocyte proliferation and angiogenesis. Translation of this finding to mammalian models of injury during early development may provide an opportunity to improve outcomes during intrauterine fetal or neonatal cardiac surgery.

Glial Fibrillary Acid Protein and Cerebral Oxygenation in Neonates Undergoing Cardiac Surgery.

Neonates undergoing surgery for complex congenital heart disease are at risk of developmental impairment. Hypoxic-ischemic brain injury might be a contributing factor. We aimed to investigate the perioperative release of the astrocyte cytoskeleton component glial fibrillary acid protein and its relation to cerebral oxygenation. Serum glial fibrillary acid protein levels were measured before and 0, 12, 24, and 48 hours after surgery. Reference values were based on preoperative samples; concentrations above the 95th percentile were defined as elevated. Cerebral oxygenation was derived by near-infrared spectroscopy. Thirty-six neonates undergoing 38 surgeries utilizing cardiopulmonary bypass were enrolled (complete data available for 35 procedures). Glial fibrillary acid protein was elevated after 18 surgeries (arterial switch: 7/12; Norwood: 5/15; others: 6/8; p = 0.144). Age at surgery was higher in cases with elevated serum levels (6 [4-7] vs. 4 [2-5] days, p = 0.009) and intraoperative cerebral oxygen saturation was lower (70 ± 10% vs. 77 ± 7%, p = 0.029). In cases with elevated postoperative glial fibrillary acid protein, preoperative cerebral oxygen saturation was lower for neonates undergoing the arterial switch operation (55 ± 9% vs. 64 ± 4%, p = 0.048) and age at surgery was higher for neonates with a Norwood procedure (7 [6-8] vs. 5 [4-6] days, p = 0.028). Glial fibrillary acid protein was elevated after ∼50% of neonatal cardiac surgeries and was related to cerebral oxygenation and older age at surgery. The potential value as a biomarker for cerebral injury after neonatal cardiac surgery warrants further investigation; in particular, the association with neurodevelopmental outcome needs to be determined.

Plasma Neutrophil Gelatinase-Associated Lipocalin Is Associated With Acute Kidney Injury and Clinical Outcomes in Neonates Undergoing Cardiopulmonary Bypass.

Acute kidney injury is a frequent complication following neonatal cardiac surgery and is associated with significant morbidity and mortality. The objectives of this study were to determine if plasma neutrophil gelatinase-associated lipocalin levels were associated with acute kidney injury and clinical outcomes in neonates with congenital heart disease undergoing cardiopulmonary bypass. Retrospective single-center observational study. A pediatric cardiac ICU within a tertiary-care academic hospital. Patients age less than 30 days undergoing cardiac surgery requiring cardiopulmonary bypass. None. Plasma neutrophil gelatinase-associated lipocalin peaked at 12 hours postcardiopulmonary bypass and more than doubled compared with preoperative levels. Higher preoperative and 24-hour postoperative neutrophil gelatinase-associated lipocalin levels were associated with acute kidney injury (r = 0.30, r = 0.49), longer duration of mechanical ventilation (r = 0.40, r = 0.51), ICU (r = 0.32, r = 0.33) and hospital lengths of stay (r = 0.28, r = 0.32), and total hospital charges (r = 0.35, r = 0.30; all p values < 0.05). Both preoperative and 24-hour postoperative plasma neutrophil gelatinase-associated lipocalin levels are associated with acute kidney injury and worse clinical outcomes in neonates undergoing cardiac surgery. Plasma neutrophil gelatinase-associated lipocalin levels may have a role in risk stratification for predicting postoperative renal dysfunction as well as providing a potential clinical trajectory in the postoperative period.

Parental emotional and hands-on work-Experiences of parents with a newborn undergoing congenital heart surgery: A qualitative study.

To explore both mothers' and fathers' experiences from prenatal or postnatal diagnosis of their newborn's congenital heart disease (CHD) to the first discharge after heart surgery in a Swiss university children's hospital. A qualitative research approach, based on a constructivist paradigm, was applied to explore participants' experiences and perceptions. Parents of nine children with moderate to severe CHD participated in semistructured joint couple interviews. Data were analyzed inductively via an iterative process, following the steps of thematic analysis. Between the child's CHD diagnosis and hospital discharge after neonatal cardiac surgery, the overarching theme for parents was being confronted with demanding emotional and hands-on work. This parental work included four themes with subthemes: Parents had to tackle a route through an unknown hospital world from receiving the CHD diagnosis and experiencing delivery to attending to their child in the pediatric intensive care unit and during surgery, as well as during the transfer to and the stay on the pediatric cardiac unit. They experienced an at times challenging interplay with health care professionals, performed teamwork as the nuclear family and managed concerned relatives and friends. Health care professionals should establish trustful relationships with parents, while accompanying families continuously, providing consistent, straightforward information, and expressing appreciation for the parents' exceptional emotional and hands-on work. Health care professionals' awareness of parent's experiences is vital to compassionate family-centered care.