Lessons Learned from Infants with Late Detection of Critical Congenital Heart Disease

Author(s):  
Gerard R. Martin ◽  
Bryanna N. Schwartz ◽  
Lisa A. Hom ◽  
Mary T. Donofrio
PEDIATRICS ◽  
2013 ◽  
Vol 132 (3) ◽  
pp. e604-e611 ◽  
Author(s):  
A. L. Dawson ◽  
C. H. Cassell ◽  
T. Riehle-Colarusso ◽  
S. D. Grosse ◽  
J. P. Tanner ◽  
...  

2017 ◽  
Vol 21 (7) ◽  
pp. 1590-1590
Author(s):  
Monica R. McClain ◽  
John S. Hokanson ◽  
Regina Grazel ◽  
Kim Van Naarden Braun ◽  
Lorraine F. Garg ◽  
...  

2020 ◽  
Vol 6 (3) ◽  
pp. 74
Author(s):  
Lisa A. Hom ◽  
Gerard R. Martin

Newborn screening for critical congenital heart disease (CCHD) is recommended for implementation in many developed countries as the standard of care. Efforts to implement this point of care screen in developing regions face unique barriers, and present important opportunities. The First Pan-African Newborn Screening Conference, held in Rabat in June 2019, incorporated a workshop dedicated specifically to identifying and discussing CCHD screening issues in the Middle East Northern Africa (MENA) region. The issues explored may be beneficial as part of the greater discussion of CCHD screening’s growing importance in developing regions around the world. Screening experts presented education and lessons learned from previous CCHD implementations, including a hands-on technical demonstration of CCHD screening. Children’s HeartLink, The Newborn Foundation, and Children’s National Hospital each presented on their experiences working with teams and pilot projects from around the world. Experience in implementation from Children’s Hospital Marrakesh was presented and highlighted some of the unique findings, challenges, and experiences of screening in Morocco. As developing regions investigate the implementation of CCHD screening using pulse oximetry either as part of research studies, pilots, regional studies, or as part of a nationally supported program, data to inform policymakers on the benefits of screening and specific needs for infrastructure development and resources are essential. This special issue contains initial lessons learned on newborn CCHD screening from a select number of developing countries, including Saudi Arabia and Morocco and regions such as Latin America.


2017 ◽  
Vol 21 (6) ◽  
pp. 1240-1249 ◽  
Author(s):  
Monica R. McClain ◽  
John S. Hokanson ◽  
Regina Grazel ◽  
Kim Van Naarden Braun ◽  
Lorraine F. Garg ◽  
...  

2014 ◽  
Vol 168 (4) ◽  
pp. 361 ◽  
Author(s):  
Cora Peterson ◽  
Elizabeth Ailes ◽  
Tiffany Riehle-Colarusso ◽  
Matthew E. Oster ◽  
Richard S. Olney ◽  
...  

2017 ◽  
Vol 86 (7-8) ◽  
Author(s):  
Zoltan Narancsik ◽  
Minca Mramor ◽  
Samo Vesel

Introduction: Patients with major or critical congenital heart disease (CHD) require surgical treatment or interventional cardiac catheterization during the first year or 28 days of life, respectively. Currently, the detection of CHD in Slovenia relies on the prenatal ultrasound screening and physical examination of the newborn.Aims: 1) To determine the incidence of major/critical CHD in Slovenia; 2) to determine the proportion of infants with late detection of major/critical CHD based on the existing clinical practice; and 3) to estimate the improvement in CHD detection with a nation-wide neonatal pulse oximetry screening programme.Methods: We reviewed the documentation of all patients with major/critical CHD born in Slovenia in years 2007–2012. We determined whether the heart condition was detected: 1) on time – prenatally or prior to discharge from maternity ward; or 2) late – after discharge or at autopsy.Results: Among 128,839 live-born babies, 293 were diagnosed with a major CHD (2.27/1000 live births, 95 % confidence interval (CI): 2.0–2.5/1000) and of those 150 with a critical CHD (1.16/1000 live births, 95 % CI: 1.0–1.4/1000). Late detection occurred in 17.7 % of patients with major and 10.9 % patients with critical CHD. Out of 15 late-detected patients with critical CHD, 14 had an obstructive left heart lesion. In 2 patients CHD was diagnosed after death.Conclusions: Detection of CHD in Slovenia is satisfactory. However, in the observed period, 10.9 % of newborns with a critical CHD were discharged undiagnosed. A nation-wide pulse oximetry screening programme could improve pre-discharge CHD detection. 


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