scholarly journals OP35.04: Effect of changes to UK fetal cardiac screening protocols across the spectrum of congenital heart disease requiring intervention in the first year of life

2012 ◽  
Vol 40 (S1) ◽  
pp. 161-161
Author(s):  
F. Bu'Lock ◽  
S. Shebani ◽  
H. Eltayb ◽  
G. Peek ◽  
M. Khare ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
First Year ◽  
Cardiac Screening ◽  
First Year Of Life

scholarly journals Parental experience of the neuromotor development of children with congenital heart disease: an exploratory qualitative study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Elena Mitteregger ◽  
Martina Wehrli ◽  
Manuela Theiler ◽  
Jana Logoteta ◽  
Irina Nast ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Qualitative Study ◽  
Motor Development ◽  
Congenital Heart ◽  
Healthcare Professionals ◽  
Qualitative Content Analysis ◽  
First Year ◽  
First Year Of Life ◽  
Neuromotor Development

Abstract Background Children with severe congenital heart disease (CHD) are a group of children at risk for neurodevelopmental impairments. Motor development is the first domain to show a delay during the first year of life and may significantly contribute to parental concerns, stress, and difficulties in early child-parent attachment. Thus, the aim of the study was to better understand the wishes and concerns of parents of children with CHD and explore their experience of their children’s neuromotor development in the first year of life. Methods In this qualitative study, fourteen families were recruited. Their children were aged 1–3 years and had undergone open heart surgery within the first 6 months of life. Semi-structured interviews were audio-recorded and transcribed. The data was explored within an expert group, and a qualitative content analysis was conducted using VERBI MAXQDA software 2020. The study was conducted in accordance with the COREQ checklist. Results Parents of children with CHD reported several burdens and needs. Parental burdens concerned the child’s motor development, their own physical and psychological strain, and difficulties in communication with healthcare professionals. The needs, parents reported included supporting their child’s motor development, a medical coordinator, and better communication between healthcare professionals and parents. During the first phase of their children’s illness, parents underwent a dynamic transitional phase and expressed the need to rely on themselves, to trust their children’s abilities, and to regain self-determination in order to strengthen their self-confidence. Conclusions It is essential to involve parents of children with CHD at an early stage of decision-making. Parents are experts in their children and appreciate medical information provided by healthcare professionals. Interprofessional teamwork, partnering with parents, and continuous support are crucial to providing the best possible care for children and their families. Family-centred early motor intervention for CHD children might counteract the effect of parental overprotection and improve children’s motor development and thus strengthen child-parent interaction. In future work, we aim to evaluate a family-centred early motor intervention for children with CHD developed on the basis of this qualitative study. Trial registration Not applicable.

scholarly journals Updates in Congenital Heart Disease: Can Outcomes Improve?

2019 ◽  
Vol 36 (S 02) ◽  
pp. S22-S28
Author(s):  
Gerard R. Martin ◽  
Russell R. Cross ◽  
Lisa A. Hom ◽  
Darren Klugman
Keyword(s):  
Intensive Care Unit ◽  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Malformations ◽  
Congenital Heart ◽  
First Year ◽  
Cardiac Intensive Care Unit ◽  
Cardiac Intensive Care ◽  
First Year Of Life ◽  
Pulse Oximetry Screening

AbstractDespite numerous advances in medical and surgical management, congenital heart disease (CHD) remains the number one cause of death in the first year of life from congenital malformations. The current strategies used to approach improving outcomes in CHD are varied. This article will discuss the recent impact of pulse oximetry screening for critical CHD, describe the contributions of advanced cardiac imaging in the neonate with CHD, and highlight the growing importance of quality improvement and safety programs in the cardiac intensive care unit.

CONGENITAL HEART DISEASE: INCIDENCE IN THE FIRST YEAR OF LIFE

1988 ◽  
Vol 128 (2) ◽  
pp. 381-388 ◽  
Author(s):  
RALPH G. GRABITZ ◽  
MICHEL R. JOFFRES ◽  
RUTH L. COLLINS-NAKAI
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Disease Incidence ◽  
First Year ◽  
First Year Of Life

scholarly journals Congenital Heart Disease and Its Impact on the Development of Anastomotic Strictures after Reconstruction of Esophageal Atresia

2018 ◽  
Vol 2018 ◽  
pp. 1-5 ◽  
Author(s):  
Pernilla Stenström ◽  
Martin Salö ◽  
Magnus Anderberg ◽  
Einar Arnbjörnsson
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Esophageal Atresia ◽  
Congenital Heart ◽  
First Year ◽  
Retrospective Case ◽  
Anastomotic Strictures ◽  
First Year Of Life ◽  
Severe Congenital Heart Disease

Background. The aim was to explore if severe congenital heart disease (CHD) influenced the need for dilatation of anastomotic strictures (AS) after the repair of esophageal atresia (EA). Methods. A retrospective case-control study was conducted examining AS in children with EA and Gross type C. The spectra of CHD and cardiac interventions were reviewed. The frequency of dilatations of AS during the first year following EA reconstruction was compared between children with and without severe CHD requiring cardiac surgery during their first year of life. Endoscopic signs of stricture were an indication for dilatation. Results. Included in the follow-up for AS were 94 patients who had EA reconstructions, of whom 10 (11%) children had severe CHD requiring surgery during the first year including 19 different cardiac interventions. In total, 38 patients needed dilatation of esophageal AS, distributed as six (60%) with severe CHD and 32 (38%) without severe CHD (p=0.31). Conclusion. Severe CHD was present in 11% of children with EA. Esophageal AS developed in 60% children with concomitant CHD, but although high, it did not reach statistical difference from children without CHD (38%).

Parenting Stress in Parents of Infants With Congenital Heart Disease and Parents of Healthy Infants: The First Year of Life

2017 ◽  
Vol 40 (4) ◽  
pp. 294-314 ◽  
Author(s):  
Nadya Golfenshtein ◽  
Alexandra L. Hanlon ◽  
Janet A. Deatrick ◽  
Barbara Medoff-Cooper
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Parenting Stress ◽  
Congenital Heart ◽  
First Year ◽  
Healthy Infants ◽  
First Year Of Life

scholarly journals The economic impact of critical congenital heart disease to the health system and families in Colombia

F1000Research ◽  
2019 ◽  
Vol 8 ◽  
pp. 92
Author(s):  
Cindy Lorena Chamorro Velásquez ◽  
Nestor Fernando Sandoval Reyes ◽  
Alejandra Taborda Restrepo ◽  
Sandra Vanessa Romero Ducuara ◽  
Maria Teresa Domínguez ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Health System ◽  
Economic Impact ◽  
Congenital Heart ◽  
Indirect Costs ◽  
First Year ◽  
Critical Congenital Heart Disease ◽  
Out Of Pocket Expenses ◽  
First Year Of Life

Background: Critical congenital heart disease (CCHD) make up a group of heart diseases present in newborns since the prenatal period and requiring early intervention through surgery or percutaneous interventions in the first year of life. Little is known about the societal economic impact associated with their care in low to middle income countries. We estimated direct medical costs, out-of-pocket expenditures and indirect costs of CCHD patients in Colombia. Methods: The methodology to estimate costs involved four stages: identification, measurement, and assessment of resources consumed, and total cost calculation. Regarding medical costs, hospital and ambulatory costs were estimated for the patient’s first year of life using clinical records of 73 patients and with thematic experts. A survey was carried out on 20 children´s caregivers to determine the out-of-pocket expenses and indirect costs. For this estimation, a descriptive analysis was made on the survey taking into account the reported salary. All costs are expressed in US dollars (2017 exchange rates). Results: The average direct medical hospital costs for CCHDs were $25,835 and the ambulatory costs reached $480. Indirect costs were $1,303 and out-of-pocket expenses were $2,058, which for families with an income lower than one monthly minimum wage (1 SMMLV) in 2017 correspond to $250. The impact on their budget was 57%. Conclusions: CCHDs represent an important economic impact both for the Colombian General Social Health System and for families. This study made it possible to estimate the costs that are not easily visible and thus quantified.

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