Critical Congenital Heart Disease

All babies born in Missouri should be screened for critical congenital heart disease (CCHD) 24 to 48 hours after birth. CCHD happens when a baby’s heart or major blood vessels do not form correctly, causing a defect. There are many different types of heart defects that range from mild to severe. Babies with “critical” heart defects need urgent treatment, which may include medicine or surgery. Without treatment, these defects can lead to death or cause serious health issues.

CCHD screening is a simple test done to determine the amount of oxygen in the baby’s blood. Low oxygen levels can be a sign of CCHD. The test is done by a health care provider using a device called a pulse oximeter. The pulse oximeter uses an infrared light sensor gently wrapped around the baby’s right hand and one foot. Light passes through the skin and tissue, and the sensor estimates the blood oxygen level. The test is painless and takes just a few minutes.

Most babies who pass the CCHD screening will not have CCHD. However, it is important to know that screening cannot identify every baby with a heart problem.

Electronic CCHD Reporting Form

Health care providers should submit CCHD results on blood spot collection forms. If unable to do so, health care providers should use our new electronic CCHD reporting form to report CCHD results.

CCHD Form

Frequently Asked Questions for Parents

What is critical congenital heart disease (CCHD)?

CCHD refers to specific congenital heart defects that happen when a baby’s heart or major blood vessels inside the heart do not develop properly. About 2 out of every 1,000 babies are born with a CCHD. These heart defects occur before birth and can range from mild to severe. Heart defects require prompt treatment; if left untreated, they can cause serious health problems, developmental delays, or death.

How is CCHD screening performed?

CCHD screening is a simple bedside test performed by placing a pulse oximeter on a baby’s hand and foot, and it should be done between 24 and 48 hours after birth. The test is painless, takes only a few minutes, and can often be completed at the bedside. It is performed by a health care provider to measure the amount of oxygen in the baby’s blood. Low oxygen levels can indicate CCHD.

What should I know about CCHD screening results?

If your baby has a low oxygen reading, the health care provider will examine your baby carefully. They may perform an ultrasound of the heart, called an echocardiogram or “echo,” to look for CCHD either in the hospital or after discharge in a doctor’s office. The results will need to be reviewed by a pediatric cardiologist. If the echocardiogram shows a problem, the medical team will discuss the next steps with you.

Most babies who pass the CCHD screening will not have a heart defect; however, this test does not detect all defects, so it is still possible to have CCHD even with a negative screening result.

Why is CCHD screening important?

Without screening shortly after birth, babies with CCHD might go home from the hospital or birthing center without proper care because they look healthy. Sometimes, even babies who appear to have a normal prenatal ultrasound can have hidden CCHD. At home, these babies can develop serious health problems and often need emergency care. CCHD screening may save a baby’s life by helping detect a serious heart defect, allowing the baby to be treated and lead a healthier life.

Laws & Regulations

Chloe's Law -- critical congenital heart disease screening, requirements--rulemaking authority.
191.334.

Critical Congenital Heart Disease Screening Rules 19 CSR 40-12.010

Additional Resources

General Information

Resources for Parents and Health Care Providers

New Video! Newborn Screening for Critical Congenital Heart Disease

This video, produced by the American Academy of Pediatrics, will provide clinicians and medical staff with comprehensive instructions and an in-depth exploration of how to perform a proper screening for critical congenital heart disease (CCHD).

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