The Adaptation of Parents to the Birth of an Infant With a Congenital Malformation: A Hypothetical Model

PEDIATRICS ◽  
1975 ◽  
Vol 56 (5) ◽  
pp. 710-717 ◽  
Author(s):  
Dennis Drotar ◽  
Ann Baskiewicz ◽  
Nancy Irvin ◽  
John Kennell ◽  
Marshall Klaus
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Cleft Palate ◽  
Congenital Malformation ◽  
Parental Attachment ◽  
Congenital Heart ◽  
Structured Interviews ◽  
Hypothetical Model ◽  
Parental Reactions ◽  
Wide Range

To determine the course of parental reactions to the birth of a child with a congenital malformation and the process of parental attachment, the parents of 20 children with a wide range of malformations including mongolism, congenital heart disease, and cleft palate were interviewed. Structured interviews took place 7 days to 60 months after birth. Despite the wide variation of malformation, analysis of the interviews demonstrated five stages of parental reactions—shock, denial, sadness and anger, adaptation, and reorganization—in dealing with a congenitally malformed child during the course of his development and care. Observations of these patients suggest that early crisis counseling in the first months of life may be particularly crucial in parental attachment and adjustment.

scholarly journals Being parent of a child with congenital heart disease, what does it mean? A qualitative research

2021 ◽  
Vol 9 (1) ◽  
Author(s):  
Nahid Dehghan Nayeri ◽  
Zahra Roddehghan ◽  
Farzad Mahmoodi ◽  
Parvin Mahmoodi
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Life Experience ◽  
The Body ◽  
Spiritual Needs ◽  
Structured Interviews ◽  
Financial Condition ◽  
Data Saturation

Abstract Background Childbirth is one of the invaluable human experiences and is associated with parental happiness. However, when a child is born with congenital heart disease, it creates emotional and mental distress. As a result, it changes the parents’ response to their child birth. Exploring parenthood experiences add to the body of knowledge and reveal new perspectives. In order to make healthcare professionals able to support these children and their families, they should first understand the meaning of this phenomenon. This study aimed to explore the meaning of parenting a child with Congenital Heart Disease in Iran. Methods A qualitative study was adopted with a conventional content analysis approach and constant comparative analysis. Participants in this study were 17 parents, including parents of children with congenital heart disease who were selected by purposeful sampling method. Semi-structured interviews were used for data collection and continued to data saturation. Data were analyzed via MAXQDA 10 software. Results Four categories and twenty three subcategories emerged as meaning of parenting a child with Congenital Heart Disease. Categories include “Emotional breakdown”, “The catastrophic burden of care”, “Spiritual beliefs of parents” and “The hard road” Conclusions Fully understanding the life experience of these families will allow the implementation of targeted health interventions. Hence, by understanding the meaning of parenting a child with Congenital Heart Disease, healthcare professionals can asses parents emotional statues, information and spiritual needs, financial condition, insurance and marital status using CHD standards so that support is individualized, sensitive and time appropriate.

scholarly journals Environmental Risk Factors and Congenital Heart Disease: An Umbrella Review of 165 Systematic Reviews and Meta-Analyses With More Than 120 Million Participants

2021 ◽  
Vol 8 ◽  
Author(s):  
Tie-Ning Zhang ◽  
Qi-Jun Wu ◽  
Ya-Shu Liu ◽  
Jia-Le Lv ◽  
Hui Sun ◽  
...  
Keyword(s):  
Risk Factors ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Environmental Factors ◽  
Congenital Heart ◽  
Prediction Intervals ◽  
Umbrella Review ◽  
Wide Range ◽  
Null Value ◽  
Meta Analyses

Background: The etiology of congenital heart disease (CHD) has been extensively studied in the past decades. Therefore, it is critical to clarify clear hierarchies of evidence between types of environmental factors and CHD.Methods: Electronic searches in PubMed, Embase, Web of Science, Cochrane database were conducted from inception to April 20, 2020 for meta-analyses investigating the aforementioned topic.Results: Overall, 41 studies including a total of 165 meta-analyses of different environmental factors and CHD were examined, covering a wide range of risk factors. The summary random effects estimates were significant at P < 0.05 in 63 meta-analyses (38%), and 15 associations (9%) were significant at P < 10−6. Of these meta-analyses, eventually one risk factor (severe obesity; relative risk: 1.38, 95% confidence interval: 1.30–1.47) had significant summary associations at P < 10−6, included more than 1,000 cases, had 95% prediction intervals excluding the null value, and were not suggestive of large heterogeneity (I2 < 50%), small-study effects (P-value for Egger's test > 0.10), or excess significance (P > 0.10). Eight associations (5%) (including maternal lithium exposure, maternal obesity, maternal alcohol consumption, and maternal fever) had results that were significant at P < 10−6, included more than 1,000 cases, and had 95% prediction intervals excluding the null value (highly suggestive).Conclusion: This umbrella review shows that many environmental factors have substantial evidence in relation to the risk of developing CHD. More and better-designed studies are needed to establish robust evidence between environmental factors and CHD.Systematic Review Registration: [PROSPERO], identifier [CRD42020193381].

scholarly journals Association between early prenatal exposure to ambient air pollution and birth defects: evidence from newborns in Xi’an, China

2018 ◽  
Vol 41 (3) ◽  
pp. 494-501 ◽  
Author(s):  
Lingling Wang ◽  
Xiaomei Xiang ◽  
Baibing Mi ◽  
Hui Song ◽  
Min Dong ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Cleft Palate ◽  
Birth Defects ◽  
Air Pollutants ◽  
Congenital Heart ◽  
Ambient Air ◽  
Ambient Air Pollution ◽  
Ambient Air Pollutants ◽  
Increased Risk

Abstract Background The aim of this study was to investigate an association between birth defects and exposure to sulfur dioxide (SO2), nitrogen dioxide (NO2) and particles ≤10 μm in an aerodynamic diameter (PM10) during early pregnancy in Xi’an, China. Methods Birth defect data were from the Birth Defects Monitoring System of Xi’an, and data on ambient air pollutants during 2010–15 were from the Xi’an Environmental Protection Bureau. A generalized additive model (GAM) was used to investigate the relationship between birth defects and ambient air pollutants. Results Among the 8865 cases with birth defects analyzed, the overall incidence of birth defects was 117.33 per 10 000 infants. Ambient air pollutant exposure during the first trimester increased the risk of birth defects by 10.3% per 10 μg/m3 increment of NO2 and 3.4% per 10 μg/m3 increment of PM10. No significant association was found between birth defects and SO2. Moreover, NO2 increased risk of neural tube defects, congenital heart disease, congenital polydactyly, cleft palate, digestive system abnormalities and gastroschisis, and PM10 was associated with congenital heart disease and cleft lip with or without cleft palate. Conclusions Chinese women should avoid exposure to high levels of NO2 and PM10 during the first 3 months of pregnancy.

scholarly journals FISH spots microdeletion in heart defects

2009 ◽  
Vol 15 (S3) ◽  
pp. 5-6
Author(s):  
P. Ferraz-Gameiro ◽  
J. Ferrão ◽  
C. Mendes ◽  
L. M. Pires ◽  
E. Matoso ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
De Novo ◽  
Heart Defects ◽  
Autosomal Dominant Trait ◽  
Conotruncal Malformations ◽  
Wide Range ◽  
22Q11.2 Microdeletion ◽  
Made In

AbstractThe 22q11.2 microdeletion is found in most of DiGeorge and velocardiofacial syndromes. These individuals have a wide range of anomalies including congenital heart disease, palatal abnormalities, characteristic facial features, hypocalcaemia, immune deficiency, and learning difficulties. Congenital heart disease, particularly conotruncal malformations are associated with 29% of deletions. This syndrome may be inherited as an autosomal dominant trait, but the majority of patients (93%) have a de novo deletion. To access the presence of the microdeletion in those individuals whose phenotipic changes suggested abnormalities in chromosome 22, a study has been made in several children with congenital heart defects.

scholarly journals CHDbase: A Comprehensive Knowledgebase for Congenital Heart Disease-related Genes and Clinical Manifestations

2022 ◽  
Author(s):  
Wei-Zhen Zhou ◽  
Wenke Li ◽  
Huayan Shen ◽  
Ruby W. Wang ◽  
Wen Chen ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Clinical Manifestations ◽  
Interaction Network ◽  
Gene Interaction ◽  
Gene Interaction Network ◽  
Phenotype Classification ◽  
Wide Range ◽  
Genetic Landscape

Congenital heart disease (CHD) is the most common cause of major birth defects, with a prevalence of 1%. Although an increasing number of studies reporting the etiology of CHD, the findings scattered throughout the literature are difficult to retrieve and utilize in research and clinical practice. We therefore developed CHDbase, an evidence-based knowledgebase with CHD-related genes and clinical manifestations manually curated from 1114 publications, linking 1124 susceptibility genes and 3591 variations to more than 300 CHD types and related syndromes. Metadata such as the information of each publication and the selected population and samples, the strategy of studies, and the major findings of study were integrated with each item of research record. We also integrated functional annotations through parsing ~50 databases/tools to facilitate the interpretation of these genes and variations in disease pathogenicity. We further prioritized the significance of these CHD-related genes with a gene interaction network approach, and extracted a core CHD sub-network with 163 genes. The clear genetic landscape of CHD enables the phenotype classification based on the shared genetic origin. Overall, CHDbase provides a comprehensive and freely available resource to study CHD susceptibility, supporting a wide range of users in the scientific and medical communities. CHDbase is accessible at http://chddb.fwgenetics.org/.

The athlete with congenital heart disease

2019 ◽  
pp. 238-250
Author(s):  
Guido E. Pieles ◽  
Graham Stuart
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Assessment Tools ◽  
Recommended Care ◽  
Specific Advice ◽  
Number Of Patients ◽  
Wide Range ◽  
Functional Exercise ◽  
Sports And Exercise

An increasing number of patients with congenital heart disease (CHD) are participating in regular sport at levels ranging from gentle recreational activities to elite professional sport. In general, children and adults with CHD should be encouraged to engage in regular physical activity, but long-term complications, such as heart failure, arrhythmias, and the need for re-operation, can occur. The sports cardiologist must be alert to the presence of underlying CHD, as physiology, haemodynamics, and functional status can change with time even after correction or palliation and intervention may be necessary before the onset of major symptoms. Although consensus management guidelines for adults with CHD are available, there is very little lesion-specific advice on sports and exercise. The wide range of diagnoses and pathophysiology make regular and individualized assessment essential. Assessment tools include ECG, echocardiogram, and CMR, but regular comprehensive functional exercise assessment is recommended. Care of the athlete with CHD should be coordinated in close collaboration with congenital heart specialists.

Congenital heart disease and inherited cardiac conditions

2020 ◽  
pp. 309-332
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Smooth Transition ◽  
Cardiac Structure ◽  
Inherited Disorders ◽  
Adult Services ◽  
Wide Range ◽  
Inherited Cardiac Conditions ◽  
First Time

‘Congenital heart disease’ is a term used to cover a wide range of cardiac conditions that result from an abnormality of cardiac structure or function present at birth. The majority of children with congenital heart disease are managed in specialist paediatric centres. Not all will require further treatment as they grow older, but if they do the importance of a smooth transition to adult services is important. Some patients will be cared for in specialist units that cater for adults with congenital heart disease (ACHD), whereas others may not. Most cardiac nurses working in the cardiac arena can be expected to care for adult patients with congenital heart disease at some time in their career. They might also care for patients who present for the first time in adulthood with inherited disorders that have significant cardiovascular problems. The focus of this chapter is to highlight some of the issues that ACHD patients might present with in cardiac areas that do not specialize in ACHD.

Congenital heart disease and inherited cardiac disorders

2014 ◽  
pp. 273-290
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Heart Defects ◽  
Cardiac Structure ◽  
Inherited Disorders ◽  
Wide Range ◽  
Cardiac Disorders ◽  
First Time

‘Congenital heart disease’ is a term used to cover a wide range of cardiac conditions that result from an abnormality of cardiac structure or function present at birth. Most conditions are a result of the heart, its valves, or its vessels not being properly formed. Some congenital heart defects are diagnosed in utero or soon after birth, whereas others might not be noted until later in life when symptoms become troublesome. Defects can be simple (requiring little or no intervention), moderate (requiring episodic intervention), or complex (with serious outcomes that require lifelong treatment and follow-up). The majority of children with congenital heart disease are managed in specialist paediatric centres, and as more children with congenital heart disease survive into adulthood, services that cater for adults with congenital heart disease (ACHD) have been developed. Most cardiac nurses working in the cardiac arena can be expected to care for adult patients with congenital heart disease at some time in their career. They might also care for patients who present for the first time in adulthood with inherited disorders that have significant cardiovascular problems. The focus of this chapter is to highlight some of the issues that ACHD patients might present with in cardiac areas that do not specialize in ACHD

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