Nearly 1 in 100 babies (about 1 percent or 40,000 babies) is born with a heart defect in the United States each year. About 4,800 babies each year are born with critical congenital heart defects or CCHD.
CCHD is a group of the seven most severe congenital heart defects. Many heart defects don’t need treatment or can be fixed easily. But some, like CCHD, can cause serious health problems or death. Babies with CCHD need treatment within the first few hours, days or months of life.
Severe congenital heart defects usually are diagnosed during pregnancy or soon after birth. Less severe heart defects often aren’t diagnosed until children are older.
During pregnancy
Your provider may use a test called fetal echo to check your baby’s heart. This test makes a picture of your baby’s heart while still in the uterus (womb). You can have this test as early as 18 to 22 weeks of pregnancy.
You may need a fetal echo if:
• Your provider finds a possible problem, like your baby has an abnormal heart rhythm, during an ultrasound.
• You have a medical condition, like diabetes or lupus, that may play a role in congenital heart defects.
• You have a family history of congenital heart defects or heart disease.
• Your baby has a chromosomal condition, like Down syndrome, Turner syndrome or VCF.
After birth
Your baby may be tested for CCHD as part of newborn screening before he leaves the hospital after birth. Newborn screening checks for serious but rare conditions at birth. It includes blood, hearing and heart screening. All states require newborn screening, but they don’t all require screening for CCHD. Ask your provider if your state tests for CCHD. Or check for what your state covers.
Babies are screened for CCHD with a test called pulse oximetry (also called pulse ox). This test checks the amount of oxygen in your baby’s blood using a sensor attached to his finger or foot.
After birth, signs and symptoms of heart defects can include:
• Fast breathing
• Gray or blue skin coloring
• Fatigue (feeling tired all of the time)
• Slow weight gain
• Swollen belly, legs or puffiness around the eyes
• Trouble breathing while feeding
• Sweating, especially while feeding
• Abnormal heart murmur (extra or abnormal sounds heard during a heartbeat)
If your baby shows any of these signs or symptoms, call her health care provider right away. Your baby’s provider can use additional tests to check for heart defects.
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