Congenital heart defects (CHDs) are the most common birth defects in the United States, affecting slightly more than 1 in 100 newborns, according to the Centers for Disease Control and Prevention (CDC). It’s important for parents to know that early detection and awareness are crucial to ensure the best outcomes for babies with heart conditions.
In recognition of Congenital Heart Awareness Week (Feb. 7-14), Mark Sklansky, MD, chief of pediatric cardiology at UCLA Mattel Children’s Hospital, shares insights on how CHDs are detected, what parents should watch for, and how families can support their children’s heart health.
Although CHDs are more prevalent than some parents might expect, understanding these conditions can help alleviate concerns and empower parents with the knowledge they need to ensure their child is healthy.
Q: What are congenital heart defects?
Dr. Sklansky: Congenital heart defects are structural abnormalities of the heart that develop before birth. Congenital heart defects represent the most common type of birth defect, occurring in just over 1% of newborns.
Q: What causes CHDs, and is there anything parents can do during pregnancy to lower the risk?
Dr. Sklansky: Most congenital heart defects have no identifiable cause. In most cases, we don’t know why they occur. This is a common concern for parents, who often wonder if they did something wrong or failed to do something they should have, leading to the development of a heart defect. The reality is, in the vast majority of cases, parents have done everything right – heart defects simply occur far more frequently than most people think.
Q: How are heart defects detected in newborns? Are they always found before birth?
Dr. Sklansky: One of the most important factors in improving outcomes for children with major congenital heart disease is early diagnosis – either shortly after birth, before the baby leaves the hospital, or ideally, before birth. The best way to ensure an optimal outcome is to detect the defect during pregnancy, typically around mid-gestation, at about 20 weeks. Most pregnancies include a 20-week ultrasound, known as an anatomic survey, where the obstetrician or maternal-fetal medicine specialist evaluates the baby’s anatomy, including the heart. This is the ideal time to detect congenital heart defects – though unfortunately most are missed until sometime after birth.
Q: If a baby passes the newborn screening, could they still have a heart condition that appears later?
Dr. Sklansky: If a heart defect isn’t detected before birth, the next best opportunity is during the newborn period, before the baby goes home. Most hospitals now offer newborn screening, including pulse oximetry, which measures oxygen levels noninvasively with a small bandage around the finger or toe. While this screening isn’t yet universal worldwide, it is widely used and helps identify many heart defects missed before birth. Unfortunately, many cases of congenital heart disease, even severe forms, are not detected until after discharge from the delivery hospital. After discharge, it becomes the responsibility of physicians, nurses and families to recognize potential signs suggestive of congenital heart disease. Babies suspected to have a heart defect are then typically referred to a pediatric cardiologist for further evaluation, usually including performance of an echocardiogram (echo) and, possibly, an electrocardiogram (ECG).
Q: What are the early signs that a baby might have a heart problem?
Dr. Sklansky: That’s a common and understandable question – how would parents know if their child has a heart problem? Many congenital heart defects don’t present with obvious symptoms, but there are symptoms we ask parents to watch for, including difficulty breathing, rapid breathing, poor feeding, or a bluish tint to the skin. Older children may report chest pain, dizziness, or palpitations. Most symptoms of heart disease are nonspecific and can be caused by other conditions, making it difficult for parents to determine the cause. In these cases, it's best to seek evaluation by a pediatrician, who can evaluate the child and, if necessary, refer them to a pediatric cardiologist or order an echocardiogram.
Q: How can parents best support their child’s heart health as they grow?
Dr. Sklansky: If a child is known to have a heart defect that may require surgery or transcatheter interventions (procedures that use a catheter), we aim to minimize any additional, preventable cardiac issues. This includes promoting a heart-healthy diet and an active lifestyle to reduce the risk of acquired coronary artery disease. These factors are especially important for children already born with a heart defect.
Q: Is it true that children with CHDs can’t play sports or be active?
Dr. Sklansky: Absolutely not. Most children with congenital heart disease can lead full, active lives, including participating in sports and other physical activities. They should be encouraged to live as normal a life as possible. In the past, too many children have been discouraged from exercise, but we now recognize that physical activity is especially important for their overall health and longevity.
Early on, when our patients are infants, our focus as pediatric cardiologists is to help babies with congenital heart disease gain weight, often through high-calorie feeds. Parents adopt this mindset, prioritizing weight gain as the key to optimizing outcomes. However, as children grow, their dietary needs change, but mindsets change more slowly. The emphasis should shift toward a heart-healthy diet and regular exercise – not just for cardiovascular health but also for the emotional and social well-being of our patients and their families.
Q: Do all babies with CHDs need surgery?
Dr. Sklansky: It varies case by case. While a little over 1% of babies are born with a heart defect, only about a quarter to a third of those require invasive intervention during the first year, such as cardiac catheterization or surgery. Most children with congenital heart disease have mild heart defects that do not require surgical treatment.
Q: What’s a common misconception about pediatric heart health that you wish more parents understood?
Dr. Sklansky: One common misconception is that congenital heart disease is rare, when in fact, it is the most common birth defect, affecting more than 1% of newborns. Another harmful misconception is that children with congenital heart disease should avoid exercise and sports. This belief can be detrimental in so many ways. It’s crucial to emphasize to both parents and children that not only is physical activity allowed, but it is strongly encouraged – especially for those with a heart defect – as it plays a vital role in their overall health. Details of what kinds of exercise are appropriate can and should be discussed with their pediatric cardiologists
Q: Is there anything else parents should keep in mind?
Dr. Sklansky: There are two important points to emphasize. First, when a heart defect is diagnosed, many parents immediately wonder if it was something they did or didn’t do. It is very rare for congenital heart defects to be caused by anything within a parent’s control. In most cases, parents have done everything right – these defects simply occur.
Second, early detection is crucial. Identifying a heart defect before birth gives the baby the best chance for optimal quality of life. However, most major heart defects are still missed during pregnancy. I recommend that all pregnant women receive detailed ultrasounds during the first and second trimesters. The first-trimester ultrasound should assess the thickness behind the baby's neck (also known as nuchal translucency), as increased thickness can indicate a higher risk of heart defects as early as 10 weeks. The second-trimester anatomy scan, typically performed around 20 weeks, should include standard cardiac screening views, even for low-risk pregnancies. These include the four-chamber view, the outflow tracts, and the three-vessel view. Expecting mothers should ask their health care providers if these specific views are part of their practice’s ultrasound evaluation during the anatomic survey.
