The diagnosis of congenital heart disease (CHD), whether identified prenatally or postnatally, represents a significant disruption in the anticipated course of parenthood. Families across diverse populations and healthcare systems frequently characterize this experience as one marked by shock, fear, and profound uncertainty [1,2]. Although medical advances have substantially improved diagnostic accuracy and survival rates, the emotional and existential burden associated with a CHD diagnosis has remained largely constant [3,4]. Parents are confronted with complex medical information as well as challenging questions regarding suffering, hope, and their child’s future [1,5,6].

This commentary addresses a specific gap: although qualitative literature repeatedly identifies spirituality as influential in how families interpret a CHD diagnosis, this evidence remains fragmented and has rarely been translated into structured, actionable counseling guidance. Prior discussions, including work from our own group, have remained largely conceptual, describing spirituality as relevant without specifying who should address it, when, how concerns should be documented, or when referral is warranted. The purpose of this article is, therefore, to move from principle to practice: we propose an evidence-informed, ethically grounded framework that clarifies the conceptual boundaries of spirituality, acknowledges its risks alongside its potential benefits, and offers concrete, time-feasible strategies for fetal and pediatric CHD counseling. This commentary is explicitly framed as a perspective and proposed framework, not as a systematic review or as a claim that spirituality is a universally beneficial or required component of care.

This commentary is an evidence-informed perspective and proposed conceptual–practical framework, not a systematic review. It is based on a narrative, targeted review of literature concerning CHD counseling, prenatal diagnosis, parental coping and decision-making, pediatric palliative care, spirituality and religiosity in health care, and ethical communication, supplemented by literature on telemedicine and artificial intelligence (AI) in CHD. Sources were identified through targeted database searches and through our group’s own empirical and scoping work, including two prior scoping reviews addressing family counseling and spirituality in CHD [7,8] and a multidisciplinary counseling editorial [9]. No formal meta-analysis, risk-of-bias assessment, or systematic evidence grading (e.g., GRADE) was performed. Accordingly, this commentary should be read as a synthesis intended to inform clinical reasoning, ethical practice, and future research priorities, rather than as a definitive evidence base.

Spirituality refers to the ways individuals and families seek meaning, express hope, interpret suffering, and act on deeply held values; it may or may not be religious [1,10]. Used loosely, however, the term risks becoming so broad that almost any parental response could be labeled “spiritual.” We therefore distinguish it from related constructs that are sometimes used interchangeably in the literature.

Over recent decades, fetal and pediatric cardiology have advanced through earlier diagnosis, refined surgical techniques, and improved perioperative care; more recently, artificial intelligence, automated image analysis, and predictive algorithms have further increased diagnostic precision and risk stratification [14,15]. These developments have helped transform many forms of CHD from often fatal conditions into chronic and frequently manageable conditions [4,16]. However, technological sophistication does not interpret suffering, contextualize uncertainty, or accompany existential distress; effective parental counseling remains an essential element that can be overshadowed by medical progress [17].

Telemedicine in fetal and pediatric cardiology illustrates the same tension. Remote consultations can expand access to expert care, which is particularly relevant in resource-limited or geographically dispersed settings [3,4]. Whether telemedicine helps or hinders relational and spiritual dialogue depends on implementation: reduced nonverbal cues and time pressure can narrow opportunities for deeper conversation, while structured follow-up calls and written materials can extend them [18,19]. Technology should be understood as a tool that can support but cannot substitute for relational counseling.

Qualitative literature on parental experience after a CHD diagnosis consistently describes families drawing on spiritual beliefs and value systems to manage distress and uncertainty, and associates spirituality with resilience and emotional adaptation during extended decision-making [1,17,18,20]. Counseling that allows space for emotional and spiritual expression may also support the grieving process that frequently accompanies the loss of the anticipated, healthy child, and may help sustain the parent–child bond, particularly for families continuing a pregnancy and preparing to care for a child with complex medical needs [5,21].

This evidence should not be read as showing that spirituality is universally beneficial. The broader literature on serious pediatric illness describes spiritual distress, religious struggle, guilt, and fatalistic interpretations of diagnosis. In the one quantitative study identified in this area, negative religious coping (e.g., feeling abandoned or punished) was independently associated with higher depressive symptom scores and lower mental-health-related quality of life among parents of infants with CHD, in contrast to the protective association observed for positive religious coping [12]. Beliefs can also contribute to refusal or delay of recommended care, or to conflict between parental convictions and medical recommendations. Clinicians themselves are not immune to this dynamic: provider beliefs have been shown to vary and to influence how fetal cardiac counseling is delivered, underscoring the risk of unintentional imposition or boundary violation when spiritual or religious framing is not handled with neutrality [22,23].

Ethical practice requires a clear distinction between acknowledging spiritual concerns and promoting specific beliefs. Healthcare professionals should respect diversity, maintain neutrality, and remain sensitive to each family’s cultural and spiritual background, creating a safe environment in which families can choose whether to share their values without feeling compelled to do so [22,23]. The role of healthcare professionals is not to provide answers to spiritual questions, but to recognize when such questions are present and respond with openness and respect.

This neutrality is most tested when parental beliefs conflict with medical recommendations, for example, in decisions about pregnancy management, the timing or extent of intervention, palliative or comfort-focused care, or the informed consent process itself, when beliefs shape how risks and benefits are weighed. In these situations, an ethically sound response involves exploring the values underlying the family’s position without abandoning the medical recommendation, seeking a time-limited and respectful dialogue rather than confrontation, and involving ethics consultation, palliative care, or spiritual care services when an impasse persists. Discussions and their resolution should be documented, and families’ informed refusals should be respected within legal and ethical limits, provided that consent is genuinely informed. Throughout, clinicians must guard against imposing their own beliefs, religious or secular, while avoiding dismissal of a family’s framework simply because it conflicts with the recommended course of care.

Translating these principles into time-limited clinical practice requires explicit guidance on when, by whom, and how spiritual concerns should be addressed; such structure is consistent with broader moves toward standardized and family-responsive fetal cardiology counseling [24].

Several real-world constraints limit how consistently this framework can be applied. Time pressure in busy clinics, clinician discomfort, and limited training in spiritual communication are common barriers; provider beliefs and comfort with the topic vary substantially and shape what is actually discussed with families [22]. Trained spiritual care professionals are often unavailable, particularly in low-resource settings, and telemedicine introduces additional constraints, including reduced nonverbal cues and compressed visit time. Pragmatic responses include brief, optional screening questions embedded in existing workflows rather than separate spiritual assessments; clear, team-based referral pathways that do not depend on any single clinician having specialized training; and institutional protocols that define roles and documentation expectations in advance. Where dedicated spiritual care services are not available, structured collaboration with community or religious leaders identified by the family, when desired by the family, may serve a similar function.

Consequently, any clinical implications drawn from this framework should remain cautious. The current evidence base is dominated by narrative synthesis, qualitative observations, and a small number of quantitative CHD-specific studies; implementation should therefore be adapted locally and prospectively evaluated before the framework is treated as a standard of care.

In Fig. 1, we present a conceptual framework intended to organize discussion; it is not an empirically validated model, nor the product of a formal consensus process. It illustrates four domains relevant to family-centered CHD counseling: (1) the emotional impact of diagnosis, reflecting shock, grief, and uncertainty; (2) technological advances, reflecting improvements in diagnostic precision, risk stratification, and access (including AI-assisted tools and telemedicine); (3) structured counseling, reflecting the team-based communication practices through which information and support are delivered; and (4) the spiritual dimension, reflecting the search for meaning, hope, and connection described above. These domains are proposed to interact rather than operate independently: for example, technological precision shapes the information delivered within structured counseling, which in turn can create space for emotional and spiritual dialogue; the spiritual dimension, reciprocally, shapes how families interpret technologically derived information and emotionally process the diagnosis. These relationships are proposed to guide clinical attention and future research and should not be interpreted as established causal pathways.

Future studies should evaluate whether spiritually sensitive counseling measurably affects parental anxiety, decisional conflict (e.g., using the Decisional Conflict Scale), satisfaction with counseling, coping, quality of life, preparedness for surgery or palliative care, adherence to follow-up, and parent–clinician trust. Evidence directly linking spirituality to hard clinical outcomes in CHD remains limited: to our knowledge, only a small number of quantitative studies exist, restricted largely to single-center, cross-sectional samples [12]. Rigorous studies using validated instruments, ideally with longitudinal and multicenter designs, are needed before clinical recommendations that go beyond the general, ethically grounded practices proposed here can be made with confidence. Validation studies should specifically examine the feasibility, acceptability, and outcome sensitivity of the prompts, documentation steps, and referral thresholds outlined in Table 1 across prenatal, postnatal, low-resource, and telemedicine settings.

Comprehensive care for children with CHD extends beyond surgical success and technological precision. Families carry the diagnosis not only as a medical fact but as an emotional and existential experience, shaped by personal values, relationships, and—for many, though not all—spiritual perspectives. We have proposed a practical framework that invites clinicians to acknowledge this dimension without imposing beliefs, while remaining alert to its risks and to the reality that some families prefer purely practical discussions. This framework is not a mandate, but an invitation: to listen more attentively, to ask with humility, and to respond with flexibility. Whether this approach translates into measurable improvements in parental anxiety, decision-making, or trust remains an open question. Future research, preferably multicenter and longitudinal, is needed to test these outcomes across diverse clinical and cultural settings. Until then, we offer this perspective as a step toward care that is not only technically excellent but also genuinely family-centered.