Caregivers of children with CHD frequently experience psychological distress related to the chronic and unpredictable demands of their child’s diagnosis. Peer support can mitigate distress and promote resilience, but few studies have explored factors affecting its implementation or the experiences of those who provide or facilitate peer support. This study aimed to identify barriers, facilitators, and recommendations for optimising peer support from the unique perspectives of leaders of patient/family organisations within the CHD community.

Using online crowdsourcing methods, qualitative data on the implementation of peer support was collected from 16 leaders representing five patient/family organisations. Crowdsourced data were coded and analysed using thematic analysis, with themes categorised as barriers, facilitators, and recommendations.

Four overarching themes were constructed: 1) Training and Expertise, highlighting the value of lived experience alongside the need for structured training in mental health and bereavement; 2) Peer Mentor Wellbeing, including burnout, secondary traumatic stress, and the importance of clear role boundaries and expectations; 3) Partnerships and Collaboration, emphasising relationships with clinical care centres; and (4) Support for all Families and Family Members, including fathers, siblings, and bereaved families.

The results provide insight into the implementation of peer support, with recommendations for next steps including hospital-community partnerships to improve access and intentional programme design to protect peer mentor wellbeing. Further understanding of caregiver and peer mentor needs is critical for elucidating ways to develop and implement optimal models of peer support.

Neurological injury is common in neonates undergoing cardiac surgery with cardiopulmonary bypass, yet perioperative neuroimaging and neuromonitoring practices vary across centres. We aimed to characterise current practices and provider perceptions across Pediatric Cardiac Intensive Care Society-affiliated centres.

We conducted an online, cross-sectional survey of Pediatric Cardiac Intensive Care Society members between August and October 2024. Part 1, completed by medical directors, assessed institutional characteristics and perioperative practices. Part 2, completed by multidisciplinary providers, evaluated perceptions of utility and sufficiency.

A total of 143 responses from 60 institutions were analysed, including 38 medical directors. Most centres had a dedicated cardiac ICU (87%) and were academically affiliated (76%). Routine neuroimaging was more common preoperatively than postoperatively (87% vs. 32%), with head ultrasound most frequently used. Near-infrared spectroscopy was the most common neuromonitoring modality, while routine electroencephalography was reported at 18% of centres preoperatively and 50% postoperatively. Physicians were more likely than advanced practice providers and nurses to report practices as sufficient. Neurocritical care teams were present at 42% of centres but were not associated with greater use of neuroimaging or monitoring.

Significant variability exists in perioperative practices and provider perceptions, highlighting the need for multidisciplinary alignment and standardised guidelines.

Hypertrophic cardiomyopathy is a life-threatening disease with limited studies in Middle Eastern populations. This pilot study (n = 8) aimed to identify rare genetic variants to enable future presymptomatic diagnosis and primary prevention. While the sample size precludes establishing population-level prevalence, our findings provide a springboard for generating testable hypotheses for future multicenter trials.

Whole-exome sequencing was performed on eight unrelated Egyptian patients. We prioritised variants using stringent criteria: allele frequency < 0.01 in gnomAD, combined annotation dependent depletion (CADD) score > 10, and focused analysis of 29 genes with definitive or moderate evidence for hypertrophic cardiomyopathy causation according to Clinical Genome Resource (ClinGen). Variants were ACMG/AMP-classified and correlated with detailed clinical phenotypes.

We identified 21 rare variants across 10 hypertrophic cardiomyopathy-associated genes. Core sarcomeric genes accounted for seven variants: MYBPC3 (n = 2; one likely pathogenic, p.Gly1206Asp), MYH7 (n = 2; one pathogenic, p.Phe252Ser), and TNNT2 (n = 3; all variants of uncertain significance). Additionally, likely pathogenic variants were found in PLN (p.Arg25Cys) and KLHL24 (p.Arg103*). Patients with pathogenic or likely pathogenic sarcomeric variants exhibited severe phenotypes, including septal thickness up to 30 mm, left ventricular outflow tract gradients up to 60 mmHg, and a high arrhythmic burden, influencing decisions like implantable cardioverter-defibrillator implantation and myectomy. Notably, all three TNNT2 carriers manifested atrial fibrillation or non-sustained ventricular tachycardia, reinforcing its arrhythmic risk. Four novel or likely pathogenic variants were submitted to ClinVar.

As the first genetic study of hypertrophic cardiomyopathy in an Egyptian population, this work expands the global mutational spectrum, demonstrates the utility of genetic testing for risk stratification and personalised management, and underscores the need to diversify genomic datasets for equitable precision medicine.

Knowledge of one’s defect is fundamental in optimising outcomes in adults with CHD. We aimed to assess factors associated with defect knowledge and how that knowledge may impact outcomes.

We performed a cross-sectional cohort study of adults with CHDs aged 18–82 years with intervention between 1982 and 2003 at one of 11 US centres in the Pediatric Cardiac Care Consortium. Participants completed a survey in 2021–2023 regarding disease knowledge and various health and quality of life outcomes. After comparing participants’ self-identification of their defect to that recorded in the medical record, we identified demographic factors associated with correct identification and assessed the association of correct identification with outcomes.

Among 2747 respondents with one of the 18 types of CHDs on the survey, 2271 (83%) correctly identified their defect. Those who correctly identified their defect were more likely to be non-Hispanic White (84% correct), were <25 years of age (89%), have a higher level of education (86% for a bachelor’s degree and 87% for a graduate degree), and have higher household income (85% for income ≥$60,000). Those with severe two-ventricle disease were most likely to correctly identify their defect (88% correct); those with moderate disease were least likely (80% correct). Correct identification was associated with seeing a cardiologist in the last 5 years (74% vs. 63%, p < 0.001) but was mixed for other outcomes.

Improving a person’s knowledge of their CHD may be an effective strategy for maintaining continuity of care.

Heart failure induced by systemic ventricular dysfunction after the Norwood procedure may improve with medications. This study aimed to evaluate the incidence of heart failure, medication use, and subsequent improvement after the Norwood procedure.

Among the patients undergoing the Norwood procedure between 2001 and 2024, those who demonstrated heart failure (systemic ventricular dysfunction lasting > 30 days) were identified. Medical therapy and clinical outcomes were evaluated in relation to the recovery of systemic ventricular dysfunction.

Among 380 patients after the Norwood procedure, heart failure was observed in 55 patients. Recovery of systemic ventricular function occurred in 21 patients with a median duration of 187 (interquartile range: 77–354) days. The cumulative incidence of recovery was 60.9% at 5 years. Recovery was more frequently observed in patients whose onset was between stage II and III palliation than in other periods (58% vs. 28%, p = .029). Survival after the onset of heart failure was better in patients who showed recovery than in those who did not (88.8% vs. 26.7% at 5 years, p < .001). At the onset of heart failure, zlog-N-terminal prohormone of brain natriuretic peptide (4.2 ± 1.3 vs. 4.5 ± 1.3, p = .55) was similar but differed at the last follow-up (2.2 ± 1.3 vs. 5.1 ± 1.5, p = .01) in patients with and without recovery. A phosphodiesterase type 5 inhibitor was identified as a factor that promoted the recovery (hazard ratio: 5.89, p < .01).

In patients who developed heart failure after the Norwood procedure, survival was better in those with recovered function than in those with sustained dysfunction. Phosphodiesterase type 5 inhibitors were identified as a factor promoting the recovery.

The diagnosis of CHD not only affects the patient but also their entire environment, including parents, causing significant alterations in their mental health. This study was to assess the levels of anxiety and depression in parents of children with CHD at different stages of the disease.

The PMNCC and PMNCR questionnaires were administered to parents of children with CHD to measure levels of state anxiety (STAI-E) and trait anxiety (STAI-R).

A total of 459 questionnaires were administered. For the state anxiety questionnaire (STAI-E), the mean score was 36, with high anxiety levels observed in 81.3% of participants and above-average levels in 18.7%. Regarding the severity of state anxiety, 82.6% presented severe anxiety, followed by moderate anxiety in 17.2%. For the trait anxiety questionnaire (STAI-R), the mean score was 43, with high levels observed in 91.5% of participants and above-average levels in 7.2%. Severe anxiety predominated in 96.7% of cases.

The mental health of parents of children with CHD is often neither diagnosed nor adequately addressed in a timely manner by paediatric cardiology teams. Assessment and support from a multidisciplinary team are required for the early identification of these conditions.

To describe the rare combination of findings where a left aortic arch and aberrant right subclavian artery are associated with a vascular ring, which is in the setting of a right-sided arterial duct.

Analysis of all prenatally diagnosed cases of left aortic arch and right-sided arterial duct (between 2016 and 2025) at three fetal cardiac centres (2 UK and 1 Austrian) with documentation of aortic arch branching pattern.

In 5/6 cases, aberrant right subclavian artery was identified. Genetic abnormality was identified in 50% of cases (22q11 microdeletion). Three fetuses had a ventricular septal defects, and two cases had vascular abnormalities (with further characterisation on postnatal CT). No fetuses had extracardiac abnormalities.

Left aortic arch with aberrant right subclavian artery is not uncommon in the general population but when associated with other abnormalities may also be a marker for chromosomal and genetic abnormalities. If not fully understood, patients may be incorrectly counselled regarding the likelihood of respiratory and swallowing symptoms of a vascular ring. An understanding of the circumstances in which a ring can arise is needed. Our study adds to the limited published data on this condition, with a view to improving clinician understanding and guiding accurate prenatal counselling.

Advances in cardiology and cardiac surgery have significantly improved survival rates among children with CHD, but these gains come with the need for long-term care that heavily involves parents. Understanding their life situation is essential for delivering effective family-centred and holistic healthcare. The study aimed to assess the life situation of parents of children with CHD in relation to sociodemographic factors and to explore their sources of support, emotional experiences, and the role of spirituality in coping.

A web-based cross-sectional survey was conducted among 117 parents of children with CHD in the Slovak Republic. Data was collected between December 2024 and January 2025 using the standardised questionnaire Life Situation of Caregivers/Parents of Children with CHD and/or Other Cardiac Diseases.

Multivariable linear regression analysis revealed that lower parental education and a history of cardiac surgeries in the child were associated with lower scores on the life situation scale. Conversely, a higher number of previous hospitalisations was linked to higher scores (p < 0.05). The most reported emotions related to the child’s illness were fear (94.87%), sadness (67.52%), and anger (38.46%). Family members were identified as the primary source of support.

These results highlight the need to identify parents at heightened psychosocial risk, particularly those with lower education and those whose children have undergone cardiac surgeries. In clinical practice, family support should be supplemented with structured psychological interventions as part of comprehensive care for families of children with CHD.

Infants with CHD experience feeding disruptions during a critical phase in oral feeding development. Dependency on high respiratory supports interfere with oral feeding opportunities. There is little evidence guiding oral feeding practices for infants requiring high flow nasal cannula and nasal continuous positive airway pressure. The aim of this study was to describe current US institutional feeding practices for infants with CHD on non-invasive ventilation.

This was a cross-sectional survey of clinicians from primarily US institutions that were members of the Cardiac Neurodevelopmental Outcomes Collaborative.

From 35 institutions contacted, 20 (57%) feeding specialists responded. Most institutions (80%) did not utilise formal guidelines for oral feeding introduction on nasal continuous positive airway pressure or high flow nasal cannula. Most institutions (80%) did not allow full oral feeds on nasal continuous positive airway pressure, but 70% centres allowed full oral nutrition on high flow nasal cannula and (85%) allowed small volume oral feeding with specifications for the level of oxygen support. While most respondents (65%) reported feeding assessment completion on all infants both pre and postoperatively, few (30%) institutions utilised a formal cue-based assessment.

Responses indicate that institutions generally do not allow oral feeding on respiratory support above high flow nasal cannula. Most centres do not utilise formal respiratory/cue based assessments to determine infant feeding readiness while on non-invasive ventilation. Future multidisciplinary research and quality improvement initiatives are needed to examine the effects of feeding infants with CHD while on non-invasive ventilation and to develop centre-specific guidelines to direct feeding progression, with potential to improve oral feeding outcomes while supporting multisystem stability.