CCHD General Resources

Critical Congenital Heart Disease Course and MOC Part 2 – Critical Congenital Heart Disease Screening

This educational module offers evidence-based content for healthcare providers on the identification and implications of CCHD, assistance in establishing a screening program, and resources for helping parents understand the testing process and results.

Pulse Oximetry Newborn Screening for CCHD in Indiana

A 13-page PowerPoint presentation by Bob Bowman, MS, the Director of Genomics and Newborn Screening at the Indiana State Department of Health that includes a history of legislative action of CHD in Indiana, the story of implementing CCHD screening in the state, actions taken to update and create, educational materials, methods and descriptions of data collection, and steps to gather follow up information.  

Healthy Little Hearts Podcast

A CDC-sponsored podcast a little over 7 minutes long titled, “A Cup of Health”, a weekly feature of the Morbidity and Mortality Weekly Report.  Dr. Stuart Shapiro is interviewed and explains heart defects in layman’s language.    

Age at Referral Mortality from Critical Congenital Heart Disease

A peer-reviewed journal article in Pediatrics by Fixler et al that found a significant proportion of neonates with CCHD experienced late or no referral to cardiac specialty centers, accounting for a significant number of deaths.  The authors urge that future population-based studies are needed to determine the benefit of pulse oximetry screening on mortality and morbidity.   

Children’s National Medical Center Congenital Heart Disease Screening Program Toolkit

A 52-page CHD Screening Program Toolkit by the Children’s National Medical Center including 5 major sections: Program Overview, Screener Training, Education for Parents and Guardians, Advocacy, and References and Resource Lists.  Contains a multitude of graphics, photos, lists, handouts, and bulleted instructions.  

Cost-Effectiveness of Routine Screening for Critical Congenital Heart Disease in US Newborns

A peer-reviewed journal article in Pediatrics by Peterson et al estimating that routine pulse oximetry screening would be cost-effective in the long term in the United States.  However, further studies are needed to refine these analyses.   

Vulnerability of the Developing Heart to Oxygen Deprivation as a Cause of Congenital Heart Defects

A peer-reviewed journal article in the Journal of the American Heart Association  by Kenhegowda et al showing that low oxygen concentrations and lack of oxygen reserve during a critical phase of heart organogenesis may provide a basis for vulnerability to the development of common septation and conotruncal heart defects.  

Factors Associated with Late Detection of Critical Congenital Heart Disease in Newborns

A peer-reviewed journal article in Pediatrics by Dawson et al showing that birth hospital nursery level and CCHD type were found to be associated with late CCHD detection.  Authors suggest that routine newborn screening could conceivably reduce differences in the frequency of late diagnosis between birth hospital facilities.  

Feasibility of Pulse Oximetry for Assessment of Infants Born in Community Based Midwifery Care

A peer-reviewed journal article in Midwifery by Smit et al concluding that pulse oximetry can be applied in community based midwifery care and does not lead to insecurity or extra referral.  However, further research on a larger group of infants must show the effect of pulse oximetry screening on neonatal outcomes.  

Genetic and Environmental Risk Factors in Congenital Heart Disease Functionally Converge in Protein Networks Driving Heart Development

A peer-reviewed journal article in the Proceedings of the National Academy of Sciences by Lage et al showing that CHD risk factors functionally converge in protein networks driving the development of specific anatomical structures that are malformed by CHD.  The authors conclude that their integrative analysis of CHD risk factors and responses suggests a complex pattern of functional interactions between genomic variation and environmental exposures that modulate critical biological systems during heart development.  

Alabama Department of Public Health Hospital Guidelines for Implementing Pulse Oximetry Screening for Critical Congenital Heart Disease

A 33-page booklet of guidelines by the Alabama Department of Health for implementing pulse oximetry screening including 4 major sections: Equipment, Training, Screening, Education, and Resources.  These guidelines contain many functional and useful documents such as a pulse ox screening algorithm, FAQs in both English and Spanish for patients, and competency checklists.  

Selected Birth Defects Data from Population-based Birth Defects Surveillance Programs in the United States, 2005-2009: Featuring Critical Congenital Heart Defects Targeted for Pulse Oximetry Screening

A peer-reviewed journal article in Birth Defects Research by Mai et al showing that, as CCHD screening is implemented across the US, population-based birth defects surveillance programs can provide useful data to assist with evaluation of CCHD screening and provide an initial basis to assess outcomes, which would eventually include the cost effectiveness of CCHD screening.

Potential – and Potential Pitfalls – of Screening Newborns for Critical Congenital Heart Disease

A less than 1-page editorial article in JAMA Pediatrics by Taylor and Phillipi describing the potential pitfalls of mandatory CCHD screening.  The authors summarize their opinion by stating that pulse oximetry screening is “probably the right thing to do”, but that data so far do not conclusively show that the benefits outweigh downsides (including overall costs of screening, delayed diagnoses because of false-negative screen results, the costs of evaluation and the heightened anxiety ensuing for families of children with false- positive screen results, and identification of children with CCHD for whom early diagnosis offers no added benefit over later detection).

Pulse Oximetry Screening for Critical Congenital Heart Defects in Asymptomatic Newborn Babies: A Systematic Review and Meta-Analysis

A peer-reviewed journal article in the Lancet by Thangaratinam et al showing, after the systematic review of 552 studies, that the pulse oximetry is highly specific for detection of critical congenial heart defects with moderate sensitivity, and meets criteria for implementation of universal screening.  

State Advocacy Focus: Newborn Screening for Critical Congenital Heart Disease

A 2-page handout by the American Academy of Pediatrics (AAP) providing an overview of, the AAP’s position on, and facts and progress nationwide regarding CCHD screening implementation.  A map is included indicating the 33 states that require newborn screening for CCHD and the 6 states that have regulations or guidance on newborn screening for CCHD as of 2014.  

Infographic: All States should Screen Newborns for Critical Congenital Heart Disease (CCHD)

A 1-page Infographic produced by the American Academy of Pediatrics with a few basic and important facts about CCHD screening, and declaring, “All states should screen newborns for Critical Congenital Heart Disease (CCHD).”