Congenital means present from birth. So, congenital heart defects refers to a number of different conditions that can occur when a baby’s heart is forming or at birth. As a result, the heart—or the major vessels in and around the heart—may not develop or work the way they should.
Congenital heart disease is the most common type of birth defect. Nearly 1 out of 100 babies are born with some sort of structural heart defect, affecting about 40,000 infants a year, according to the Centers for Disease Control and Prevention. These problems cause more deaths in the first year of life than any other birth defects. Some examples of congenital heart disease are atrial septal defect, coarctation of the aorta, and aortic stenosis.
But, there is good news. More babies are surviving thanks to advances in treating many of these problems. Although most defects are found during pregnancy by ultrasound or in early childhood, some defects aren’t discovered until adulthood. More than 1 million adults in the United States are living with congenital heart disease today.
If you or your child have a heart defect, it can be very scary. But there are a number of treatment options depending on the type of defect and the symptoms. It’s important to find a cardiologist who specializes in congenital heart defects and get support. Use this condition center to learn more about congenital heart defects. You can also chat online with others like you and keep up with the latest research.
Overview
It’s amazing to think that a baby’s heart starts developing within a few weeks into pregnancy. For expectant moms and dads, hearing the “thump, thump” of the baby’s heartbeat is a sure sign of the life that is growing inside.
The heart is a complex organ. It’s actually a muscle about the size of your child’s fist. The heart is made up of four chambers and four valves, and it works like a pump pushing nutrient- and oxygen-rich blood out to the body. If something goes awry — even ever so slightly — when the heart is forming, it can lead to congenital heart disease: a defect in the heart that is present at birth.
There are more than 35 known types of congenital heart disease, ranging from simple to complex problems. Simple defects may involve one heart valve or a hole inside the heart. Complex issues may affect several parts of the heart and how blood is circulated. Even so-called simple conditions can sometimes be complicated.
If you or your child has congenital heart disease, it means one or more parts of the heart didn’t form normally. Congenital heart disease can affect:
- the heart’s shape (structure)
- how it works or
- both
Most heart defects disrupt how blood flows through the heart and to the rest of the body, which can cause other changes in the developing heart. Heart defects can affect different parts of the heart, including:
- the septum: inside walls of the heart
- the valves: doors that help blood flow through the heart
- veins and arteries
- the electrical system, or how the heartbeat is controlled and coordinated
Heart defects range from being mild to severe.
| Degree | Examples |
| Simple | Mild pulmonary stenosis, repaired ventricular or aortic septal defect |
| Moderate | Coarctation of the aorta, Ebstein anomaly, milder forms of tetralogy of Fallot |
| Severe or highly complex | Single ventricle disorders such as hypoplastic left heart syndrome or tricuspid atresia, transposition of the great arteries with a Mustard type of repair, any type of congenital heart disease that causes cyanosis (not enough oxygen getting to the body’s tissues), complex tetralogy of Fallot |
You may worry and have concerns, but take heart. Most people born with congenital heart disease today are able to live full lives thanks to advances in medical care.
It is important that you or your child learns about his or her condition and receives lifelong specialized heart care and monitoring. Studies have linked congenital heart disease to other health problems including infections of the heart, autism, learning disabilities, and developmental and psychosocial issues.
Children with congenital heart disease are more likely to miss school and visit the hospital (3 to 4 times higher rates of visits to the emergency room). There is also financial stress on the family and, when the child reaches adulthood, uncertainty about having a family of their own. There are many resources available to help you on your journey.