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Newborn Screening for CCHD

 ANSWERS AND RESOURCES FOR PRIMARY CARE PEDIATRICIANS

Approximately 18 out of every 10,000 babies are born with a critical congenital heart defect (CCHD). CCHD is life threatening and requires intervention in infancy. However, CCHD is not always detected prenatally or upon exam in the nursery. As a result, some infants with CCHD are discharged from the nursery to home, where they quickly decompensate. To improve the early detection of CCHD, the Secretary of Health and Human Services (HHS) recommended that CCHD screening be added to the uniform newborn screening panel.


Frequently Asked Questions
The following guidance, in question and answer format, was developed by a technical advisory panel comprised of experts representing various AAP entities with a broad range of CCHD expertise.

Topic 1: Rationale for CCHD screening

How common is CCHD?

Won’t CCHD be detected prenatally or by my exam in the nursery?

Why is CCHD screening so prominent now? Is it really a good use of limited resources

Why is CCHD screening considered to be part of newborn screening?

If an asymptomatic infant fails their pulse-oximetry screening, what is the likelihood that CCHD or some other serious disease is present?


What CCHD screening algorithm should I use?

Which babies should be screened?

Who should do the screening?

What pulse-oximetry equipment should I use?

How should I track screening completion and outcomes?

Who will pay for the CCHD screening?

Do I need to obtain consent from parents before screening?

What should I do after a failed screen?

What should I do if there are no pediatric cardiologists or pediatric echocardiography in my hospital?

If this is newborn screening, what is the role of the public health department?

Does a passing CCHD screen mean that there is no critical congenital heart defect?

Are there toolkits that can help me with implementation?


Why is it important to collect and record CCHD screening data?

Other than for direct medical care, how can screening results be used?

What Data Should Be Recorded?


Should I modify the screening algorithm if I am at high altitude?

Should babies born at home be screened?

What should be done for full-term babies with systemic disease or congenital anomalies?

Should premature infants be screened?

Should babies going home from the newborn nursery with supplemental oxygen be screened?

Should babies be screened in primary care offices if they were not screened in the nursery?


 
Ask a CCHD Implementation question
If you have a question that was not listed, submit it to the advisory panel.


Resources
National Center on Birth Defects and Developmental Disabilities
State Implementation

References

Related AAP Policy Statements

Sample Implementation Toolkits

Physician Education
AAP EQIPP Newborn Screening: Evaluate and Improve Your Practice
American Board of Pediatrics: Practice Improvement Module (PIM) on Critical Congenital Heart Disease (CCHD) - physicians can access this PIM through their ABP Portfolio, but should note that it will likely take two to three months to complete.



This Web page has been developed by the American Academy of Pediatrics, through a cooperative agreement (#5U58DD00587) with the National Center on Birth Defects and Developmental Disabilities of the Centers for Disease Control and Prevention (CDC). Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the Centers for Disease Control and Prevention.