Newborn Screening for Critical Congenital Heart Disease (CCHD)
Congenital heart disease is imperative to identify and treat as soon as possible. Critical congenital heart disease in particular may require surgical or medical intervention in the first year of life. Almost all types of known congenital heart defects can be surgically repaired or palliated. Due to best practice advancements, survival rates continue to improve.
For the above reasons, Iowa law requires every newborn to be screened for CCHD prior to discharge from the hospital, or after 48 hours of age. Iowa Administrative Code 641 IAC 4 describes the requirements for newborn screening for CCHD.
As a provider, you play a key role in both executing early diagnosis and timely intervention and contributing to their continued improvement. There have been a number of noteworthy announcements in recent years regarding CCHD:
- August 2009: American Academy of Pediatrics (AAP) and the American Heart Association (AHA) conclude that pulse oximetry is a viable strategy to improve early detection of CCHD.
- September 2010: US Health and Human Services Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) recommended that CCHD be added to the newborn screening panel. They recommended seven specific targets: hypoplastic left heart syndrome (HLHS), pulmonary atresia, Tetralogy of Fallot,, total anomalous pulmonary venous return, transposition of the great arteries, tricuspid atresia and truncus arteriosus.
- January 2011: A work group chosen by the SACHDNA, APP, AHA and the American College of Cardiology came together to create recommendations for a standardized approach to screening and diagnostic follow-up, which can be seen here.
Though pulse oximetry is the agreed upon approach, it is important to inform parents and caretakers that a negative test result does not exclude the possibility of a heart defect.