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Typical ultrasound finding in duodenal atresia ("double bubble"), with a dilated stomach and proximal duodenum. High association with trisomy 21.
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Congenital heart disease (CHD) is the most common cause of major congenital anomalies affecting newborns. Prenatal detection of CHD has been improving continuously during the last two decades due to technical advances and thus optimized fetal cardiac imaging. Besides the in-utero diagnosis of CHD effective parental counseling is an integral part of...
Contexts in source publication
Context 1
... case of fetal CHD it is mandatory to examine the fetus for associated extra-cardiac malformations and asses the risk for genetic variations. Possible associated extracardiac malformations may include many organ systems: renal (agenesis, dysplasia) and gastrointestinal disease (Figure 1), abdominal wall defects (Figure 2), spine defects, and more (24). Suspected extra-cardiac malformations make it necessary to get a thorough overall view of the fetus. ...
Context 2
... of parental counseling for fetal CHD differs Personal skills from case to case (Figures 8,9). It firstly may depend on the complexity of diagnosed heart defects, with variable postnatal outcomes (Figure 10), but also on potential extra-cardiac anomalies. Importantly, differing parental prerequisites and the consultants' skills are further modifiers of counseling success. ...
Similar publications
After diagnosis of congenital heart disease (CHD) in the fetus, effective counseling is considered mandatory. We sought to investigate which factors, including parental social variables, significantly affect counseling outcome. A total of n = 226 parents were recruited prospectively from four national tertiary medical care centers. A validated ques...
Citations
... The challenges faced by the cardiologists caring for them overlap with those experienced by pediatric palliative care practitioners [43]. Parents and families require more information, counseling, and support than the medical team offers, even in developed societies [44][45][46][47]. This could be explained by the substantial anxiety and depression levels in parents after counseling for fetal heart disease [48]. ...
Although fetal cardiac programs are well established in developed countries, establishing an efficient program in low- and middle-income countries (LMICs) is still considered a significant challenge. Substantial obstacles usually face the initiation of fetal cardiac service from scratch in LMICs. The primary structural frame of a successful fetal cardiac program is described in detail, emphasizing the required team members. The potential challenges for starting fetal cardiac services in LMICs include financial, awareness-related, prenatal obstetric screening, sociocultural, psychosocial, and social support factors. These challenges could be solved by addressing these barriers, such as collecting funds for financial support, raising awareness among families and health care providers, telemedicine, building international health partnerships, modifying training protocols for fetal cardiologists and sonographers, and initiating support groups and social services for families with confirmed fetal cardiac disease. Initiating a successful fetal cardiac program requires multi-aspect structural planning. The challenges for program initiation require diverse efforts, from modified training and promoting awareness of care providers and the community to governmental and nonprofit organizations’ collaborations for proper building and utilization of program resources.
... Congenital heart disease (CHD) is the most common cause of congenital malformation in the fetus [1,2] and the leading cause of death from malformations in the first year of life [3,4]. Fetal cardiology has been evolving in recent years thanks to technological advances and more significant learning by professionals involved in this subject. ...
... Fetal cardiology has been evolving in recent years thanks to technological advances and more significant learning by professionals involved in this subject. Consequently, there was an increase in the diagnosis of intrauterine CHD [1][2][3][4][5]. ...
... A strong relationship can result in better health outcomes. To clarify CHD, it is also necessary to standardize the technical terms used, considering that the diseases can be complex and challenging to understand [3,5,6,[10][11][12][13]15,16,[18][19][20]26]. ...
Congenital heart disease (CHD) is the leading cause of death from malformations in the first year of life and carries a significant burden to the family when the diagnosis is made in the prenatal period. We recognize the significance of family counseling following a fetal CHD diagnosis. However, we have observed that most research focuses on assessing the emotional state of family members rather than examining the counseling process itself. The objective of this study was to identify and summarize the findings in the literature on family counseling in cases of diagnosis of CHD during pregnancy, demonstrating gaps and suggesting future research on this topic. Eight databases were searched to review the literature on family counseling in cases of CHD diagnosis during pregnancy. A systematic search was conducted from September to October 2022. The descriptors were “congenital heart disease”, “fetal heart”, and “family counseling”. The inclusion criteria were studies on counseling family members who received a diagnosis of CHD in the fetus (family counseling was defined as any health professional who advises mothers and fathers on the diagnosis of CHD during the gestational period), how the news is expressed to family members (including an explanation of CHD and questions about management and prognosis), empirical and qualitative studies, quantitative studies, no publication deadline, and any language. Out of the initial search of 3719 reports, 21 articles were included. Most were cross-sectional (11) and qualitative (9) studies, and all were from developed countries. The findings in the literature address the difficulties in effectively conducting family counseling, the strengths of family counseling to be effective, opportunities to generate effective counseling, and the main challenges in family counseling.
... Moreover, across the perinatal time, parents have recounted inconsistencies in care, unmet expectations of healthcare providers, and difficulties in expressing agency as parents [11]. Fetal care counseling is not consistently delivered and no evidence-based practices are standardized [16][17][18][19]. There is a clear need for accessible, family-centered perinatal interventions that effectively engage parents to determine their needs, provide necessary health information, and support development of caregiving competencies during a challenging time [20]. ...
Objective
To provide an overview of the development of the Preparing Heart and Mind™ (PHM™) care program designed for parents with a prenatal diagnosis of critical congenital heart disease (CCHD) and describe issues of parental concern, caregiving competencies, and type and timing of PHM™ topics.
Methods
Guided participation theory underpinned intervention development and a mixed methods pilot of a novel, nurse-guided mHealth intervention. Parents were enrolled from the third trimester of pregnancy–12 weeks postnatally. Online surveys, session transcripts, and app use were descriptively analyzed.
Results
The sample included 19 mothers/birthing persons and 15 caregiving partners randomized to the intervention group. In 49 sessions, mental health/wellbeing (94%) and condition-specific information (86%) were top issues. Many caregiving competencies were developed, with mothers/birthing persons often focused on feeding (86%). Regulating emotions and co-parenting consistently needed support. PHM™ topics of preparing for hospitalization (47%) and handling uncertainty (45%) were most discussed. Two cases further characterize findings.
Conclusion
Nurse-parent collaborative understanding of issues emphasized the need for mental health assessments. Prenatal intervention opportunities were underscored through discussions of caregiving issues and PHM™ topics.
Innovation
PHM™ represents an innovative approach that holds promise for supporting parents' mental health and caregiving needs outside the healthcare setting.
... Once CHD is detected prenatally, fetal cardiologists are faced with the challenge of providing prenatal counseling on diagnostic and prognostic implications. Counseling involves describing normal cardiac anatomy, the diagnosis, postnatal presentation, medical management, potential invasive prenatal and/ or postnatal interventions, prognosis, and pregnancy options [4][5][6]. Counseling on options such as termination can be complex and delicate, dependent on many factors including patient beliefs and attitudes, emotional state, severity of the cardiac defect, and presence of other congenital anomalies and/or genetic syndromes. For cardiac defects such as hypoplastic left heart syndrome (HLHS), one of the more severe forms of CCHD with single ventricle physiology, options typically include neonatal surgical intervention, palliative care, and termination of pregnancy [4][5][6]. ...
... Counseling on options such as termination can be complex and delicate, dependent on many factors including patient beliefs and attitudes, emotional state, severity of the cardiac defect, and presence of other congenital anomalies and/or genetic syndromes. For cardiac defects such as hypoplastic left heart syndrome (HLHS), one of the more severe forms of CCHD with single ventricle physiology, options typically include neonatal surgical intervention, palliative care, and termination of pregnancy [4][5][6]. ...
Advances in fetal cardiac imaging over the last few decades have allowed for increased prenatal detection and detailed counseling of congenital heart disease (CHD). When CHD is detected, fetal cardiologists are faced with the challenge of providing nuanced prenatal counseling. Studies in other specialties have shown that differences in physician attitudes exist around termination of pregnancy and correlate with variations in the counseling provided to parents. We conducted an anonymous cross-sectional survey of fetal cardiologists in New England (n = 36) regarding attitudes toward termination of pregnancy and the counseling provided to parents with a fetal diagnosis of hypoplastic left heart syndrome. Using a screening questionnaire, there was no significant difference in the counseling provided to parents regardless of the physician’s personal or professional views on termination of pregnancy, age, gender, location, type of practice, or years of experience. There were, however, differences among physicians on reasons to consider termination and their perceived professional responsibility to the fetus or mother. Further investigation on a larger geographic scale may reveal additional insights on variations in physician beliefs and whether such beliefs affect variability in counseling practices.
... Prenatal counseling of families with CHD is one of the main tasks of fetal cardiologists or maternal-fetal medicine specialists after diagnosis 15 . However, we consider the need for the presence of other health care professionals in this emotional support, considering that we must holistically help these families, knowing that, in addition to the medical aspects, there are psychological and sociocultural conditions that must be addressed. ...
... Some articles also stressed the importance of continuous, on-going support provided by nurses throughout the patient's pregnancy and beyond (Bratt et al., 2015;Kovacevic et al., 2020b;Kovacevic et al., 2021;Lafranchi & Lincoln, 2015;Lee, 2017). The nurse's presence from preconception to birth allows excellent continuity of care for the patient and family. ...
... In a study of parental counseling needs, parents reported difficulties with "perceived situational control," which Kovacevic et al. (2020b) believed could be alleviated with further and continuous support throughout the pregnancy, including by cardiac specialist nurses (p. 6). Providing contact information for nurses who can be available to answer families' questions throughout the pregnancy can "preserve long-term psychological health of parents" (Kovacevic et al., 2021(Kovacevic et al., , p. 2231. ...
... There is clear consensus in the literature that for families receiving a diagnosis of fetal CHD, counseling is critical to provide information, shape expectations, support decision-making, and mitigate the emotional toll ( Gendler et al., 2021;Lafranchi & Lincoln, 2015;Lee, 2017;Loyet et al., 2016;Reid & Gaskin, 2018;Walsh et al., 2017). Multiple studies in our review (Bratt et al., 2015;Kovacevic et al., 2020a;Kovacevic et al., 2020b;Kovacevic et al., 2021) described the nurse as a key team member who provides the psychological support and presence needed by families diagnosed with CHD. Counseling patients and families with diagnoses of fetal heart defects is complicated and multifaceted, requiring sufficient knowledge, education, and background (Kovacevic et al., 2021). ...
Background:
Fetal cardiology programs are evolving quickly and include multiple interdisciplinary health care professionals whose roles could benefit from clear definition. Nurses provide an essential function in this field; however, descriptions or definitions of nursing practice, education and knowledge requirements, and responsibilities are limited and vary across institutions and disciplines.
Purpose:
To conduct an integrative review summarizing the literature to determine the role of nurses in fetal cardiology programs.
Methods:
We conducted an integrative review as per Whittemore and Knafl's (2005) methodology of current literature to reveal strengths and opportunities in describing nursing practice as fetal cardiology nurses. The search strategy included five electronic databases: CINAHL, Medline, PsycINFO, Web of Science, and Google Scholar. Peer-reviewed English-language articles discussing nursing practices in fetal cardiology published between 2015 and 2022 were selected. Data extraction and analysis were completed on a final sample of 26 articles.
Results:
Four themes were identified on fetal cardiac nursing practice from nursing and medical perspectives: multidisciplinary key team member, psychosocial family support and counselor, coordinator or navigator, and role description.
Clinical implications:
More discussion in the literature is needed to better understand and define fetal cardiac nursing practice. Although most experts agree nurses are an important member of the interdisciplinary fetal cardiology team, their roles and educational requirements are poorly described and defined. Quality metrics and benchmarks are needed to ensure safe and effective fetal cardiology care.
... As with any prenatal intervention or counseling (Kovacevic et al., 2021), the timing and focus of a fetal neuropsychological consultation will be important to consider. Neuropsychological consultation could usefully begin at any point following a prenatal CHD diagnosis, although the primary aim(s) of the consultation must be adjusted according to the individual needs of the pregnant person/their family and other prospective caregiver(s) of the infant, as well as the infant's expected medical course. ...
... We offer a visual timeline for when fetal neuropsychological consultation may take place (Figure 1). Along our proposed timeline, there are key inflection points that may alter the course of services needed; a salient one is the decision (or determination) regarding maintaining or terminating the pregnancy (Kovacevic et al., 2021;Tacy et al., 2022). Attunement to unique psychological stressors in the context of pregnancies complicated by a fetal CHD diagnosis post-U.S. Supreme Court ruling in Dobbs v. Jackson Women's Health Organization (2022), effectively overturning the abortion protections afforded by Roe v. Wade (1973), will soon be essential to standard of care for these families. ...
... Particularly if other providers of psychosocial support either do not exist in the clinical care setting or have limited availability to follow up, periodic post-termination contact with the neuropsychologist could serve as a source of ongoing support for these individuals, while also monitoring and providing appropriate recommendations and/or referrals as needed to further support their adjustment and coping. There will be those for whom decisionmaking regarding termination is less autonomous or collaborative based on their circumstances or location (e.g., Kovacevic et al., 2021). Some may feel implicit pressure to terminate based on communication from their medical providers (Tacy et al., 2022). ...
Critical congenital heart disease (CHD) presents a lasting threat to quality of life through its adverse impact on neurodevelopmental and psychosocial outcomes. As recognition of this threat has increased, so too has an appreciation for the role of pediatric neuropsychologists in supporting families affected by CHD. But there is more to offer these families than traditional neuropsychological services, which tend to focus on secondary/tertiary forms of prevention. Now that many children with CHD are diagnosed prenatally, it may be possible to begin mitigating CHD-related risks and promoting positive outcomes earlier than ever before. Through primary prevention-oriented fetal neuropsychological consultation, as well as close collaboration with allied specialists, pediatric neuropsychology has an opportunity to re-envision its typical borders and more familiar practice models; to forge early and enduring partnerships with families; and to help promote the best possible neurodevelopmental trajectories, beginning before children are even born. In this conceptual review, we survey and integrate evidence from developmental science, developmental origins of health and disease, maternal-fetal medicine, and cardiac neurodevelopmental literatures, along with current practice norms, arriving ultimately at two central conclusions: 1) there is an important role to fill on multidisciplinary teams for the pediatric neuropsychologist in fetal cardiac care and 2) role expansion (e.g., through valuing broader-based training, flexing more generalist skills) can likely improve neuropsychological outcomes earlier than has been standard for pediatric neuropsychologists. Such a reimagining of our practice may be considered primary prevention neuropsychology. Implications for care in various settings and pragmatic barriers to implementation are discussed.
... Factors such as the time from diagnosis to counselling, appropriate communication and support by the counselor, and location were found to be important. The importance of time organization, communication skills, choice of words, the addition of visual materials (such as pictures and graphics), transparency, and reflection has also been reported by others [49]. In addition, it was found that parents want to have access to web-based information. ...
The progress in fetal cardiology allows for the early diagnosis of congenital heart defects, but there is still a lack of data on the psychological situation of parents expecting a child with a congenital heart defect. In this cross-sectional study, 77 parents (45 women and 32 men) expecting a child with a heart defect were interviewed with different questionnaires. The standardized Hospital Anxiety and Depression Scale (HADS) questionnaire was used to assess the psychological state of the parents. Various statistical procedures were performed to determine the prevalence, risk factors, and predictors of anxiety and depression. The prevalence for prenatal anxiety was 11.8% and for depressed mood 6.6%, whereas the postnatal prevalence was 25% for anxiety and 16.7% for depressed mood. The mother is influential in protecting against depression as a contact person (p = 0.035). Women were more affected by anxiety and depression than men (p = 0.036). A significant and positive correlation was observed between anxiety and depression before birth (ρ = 0.649, p < 0.001) and after birth (ρ = 0.808, p < 0.001). The level of education correlated negatively with depression (p = 0.016) and anxiety (p = 0.017) before birth. Significantly higher anxiety and depression scores were not observed among health and social workers (p = 0.084), first-time mothers (p = 0.190), and parents whose pregnancies were due to medical assistance (p = 0.051). Close collaboration between maternal-fetal care units, pediatric cardiologists and psychiatric/psychosomatic disciplinesis a possible strategy to reduce stress in parents. Therefore, an expert team of professionals, educating with understandable terms and sufficient knowledge about fetal heart disease in parenting counseling, is required. The support of affected parents can positively impact the treatment of the child and should be integrated into the daily routine of the clinic.
... Discussion with parents on the long-term prognosis constitutes a fundamental element of adequate counseling. Appropriate counseling is ideally composed of an interdisciplinary team: obstetrician, pediatrician, pediatric cardiologist, and heart surgeon [26]. Counseling to parents following the diagnosis of congenital heart disease should take into account: the severity of CHD, the association with extracardiac malformations, and the presence of an associated genetic syndrome. ...
Congenital heart disease (CHD) represents the group of the most common malformations detected both prenatally and after birth. Although progress in the management and treatments of CHD, it still remains a significant cause of neonatal morbidity and mortality. However, the recent improvement in the diagnosis and therapy of CHD represents one of the most important successes of cardiac surgery and medical treatment. Accordingly, in the last twenty years, the number of patients with CHD who have reached adulthood has increased significantly and even surpass the number of affected pediatric patients, due to the extraordinary progress in the diagnostic, clinical, and surgical technologies. In particular, the ultrasound study of the fetal heart allows a diagnosis of CHD in the prenatal period, significantly improves perinatal outcomes in infants with critical CHD, and enables a reduction in stillbirth.
... Multidisciplinary team counseling can help family members understand precisely and comprehensively the subtype, available management and treatment options, and the long-term prognosis of fetal heart abnormalities and facilitate decision-making [37][38][39]. In keeping with recent researches [21,40], our results con rmed the signi cant impact of a multidisciplinary team approach on the pregnancy outcomes of fetal cardiac defects. ...
Purpose To explore the impactors of pregnancy outcomes of fetal heart defects and evaluate the influence of a multidisciplinary team cooperation approach.
Methods A retrospective study of fetal cardiac defects diagnosed at our institution from January 2012 to June 2021 was carried out. Clinical data, including types of cardiac malformations, accompanying defects, genetic results, and pregnancy outcomes were analyzed.
Results Among 400 fetuses, 122 belonged to group A (single heart defect without extracardiac defect), 115 in group B (single heart defect with extracardiac abnormalities), 100 in group C (multiple cardiac defects without extracardiac abnormalities), and 63 belonged to group D (multiple cardiac defects with extracardiac abnormalities). The termination rate in the four groups was 44.26%, 86.09%, 70%, and 82.54%, respectively (P<0.05). Multiple logistics regression analysis revealed that co-existence of extracardiac defects (OR 7.347, CI 3.674,14.694), with pathogenic genetic anomalies (OR 7.493, CI 2.051,27.372), higher prognosis grades (OR 6.307, CI 3.943,10.088) and diagnosed in later gestational age (OR 0.819, CI 0.753, 0.890)were significantly associated with the termination of pregnancy. The MDT group had a significantly lower rate of pregnancy termination, particularly in groups C and D (p<0.001).
Conclusion It is important to process comprehensive cardiac and extracardiac ultrasound assessment and further genetic testing of fetal cardiac defects. Diagnosed gestational age, the severity of heart lesions, combined with extracardiac abnormalities, and identified pathogenic genetic abnormalities influence pregnancy outcomes. Multidisciplinary team cooperation is an effective approach and should be applied in fetal cardiac defects management to reduce unnecessary termination of pregnancy.
