Infants not receiving recommended screenings and interventions

More work needed to ensure all infants receive screening and prompt medical care if needed.

According to the U.S. Centers for Disease Control and Prevention (CDC), not enough newborn babies are receiving point-of-care newborn screening for hearing loss (HL) and critical congenital heart disease (CCHD).  The CDC suggests that all children can have a better chance at reaching their full potential if they are assessed at birth and screened for deficiencies.

 

Alarming Statistics

The CDC says that approximately 1 in 500 infants are born with CCHD, which includes the more severe forms of congenital heart disease (CHD). CHD is the most common type of birth defect and accounts for more than 30 percent of all infant deaths from birth defects. Point-of-care screening can help identify many infants with CCHD before they go home.

 

Newborn Screening

Newborn screening, a public health program that benefits 4 million U.S. infants every year, identifies conditions that can affect a child’s long-term health or even survival. Prior to discharge, national guidelines are now calls for:

  • Laboratory testing
  • Screening for hearing loss
  • Screening for CCHD

“Newborn screening at birth is crucial to quickly identify infants at risk of hearing loss and congenital heart disease so they can receive early intervention and follow-up care,” said CDC Director Brenda Fitzgerald, M.D. “Finding these conditions early can give infants the best chance to properly develop and lead healthy lives.”

 

Undiagnosed Conditions

CDC estimates that each year about 875 U.S. newborns with a CCHD are not diagnosed before discharge because their birth facilities do not do newborn screening. Most of these infants could be identified using a non-invasive and painless test: “pulse oximetry testing.”  For every 200 infants with a CCHD, at least 1 death from undiagnosed CCHD could be avoided if all birth facilities screened newborns using pulse oximetry testing. 

Similarly, permanent hearing loss present at birth affects nearly 2 infants per 1,000 in the United States. Most children with hearing loss are considered to have or be at risk for a developmental delay. Infants who are diagnosed before age 3 months and receive intervention services before age 6 months have significantly better language development than children who are not

 

Early Hearing Detection and Intervention 

Federally funded state-based Early Hearing Detection and Intervention (EHDI) programs help ensure infants receive recommended diagnostic and intervention services. In short, EHDI focuses on nationally recognized “1-3-6” guidelines:

  • Children are screened for hearing loss before 1 month of age
  • If needed, diagnosed for hearing loss before age 3 months
  • Enrolled in early intervention programs before age 6 months

 In contrast to EHDI, there is no federal support for state-based CCHD screening programs. Not detecting heart-related birth defects early can pose a significant increase in risk for permanent disability and even death. “The collaboration between EHDI programs, health professionals, and parents has led to great progress on hearing loss screening and follow-up,” said Stuart K. Shapira, M.D., Ph.D., Chief Medical Officer and Associate Director for Science at CDC’s National Center on Birth Defects and Developmental Disabilities. “We must apply the same effort and resources to CCHD screening to help prevent infant deaths and offer children the greatest chance to thrive.”


For more information, the CCD’s Morbidity & Mortality Weekly Report highlights the benefits of, and gaps in assessing point-of-care newborn screening for hearing loss (HL) and critical congenital heart disease (CCHD). 

 

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