CHD Facts

What is a congenital heart defect?

Congenital heart defects are structural problems with the heart present at birth. They result when a mishap occurs during heart development soon after conception and often before the mother is aware that she is pregnant. They can involve the interior walls of the heart, the valves inside the heart, and/or the arteries and veins that carry blood to the heart or the body. Defects range in severity from simple problems, such as “holes” between chambers of the heart, to very severe malformations, such as complete absence of one or more chambers or valves.

CHDs are the #1 birth defect.    

It affects about 1% of newborns — over 40,000 babies are born with heart defects in the United States every year. Each day 10,830 babies are born in the U.S.; 411 of them have a birth defect — of those, 87 will be born with a congenital heart defect — that’s more than cerebral palsy (27), sickle cell disease (27), Down Syndrome (12), and oral/facial clefts (11) combined (total of 77). (According to the March of Dimes)

Is all heart disease in children congenital?

No, but most is. These defects are usually but not always diagnosed early in life. Rarely, heart disease is not congenital but may occur during childhood such as heart damage due to infection. This type of heart disease is called acquired; examples include Kawasaki disease and rheumatic fever. Children also can be born with or develop heart rate problems such as slow, fast, or irregular heart beats, known as “arrhythmias”.

Who is at risk to have a child with a congenital heart defect?

Anyone can have a child with a congenital heart defect. Out of 1,000 births, nine babies will have some form of congenital heart disorder, most of which are mild. If you or other family members have already had a baby with a heart defect, your risk of having a baby with heart disease may be higher.

How many people in the United States have a congenital heart defect?

About 650,000 to 1.3 million Americans have a congenital heart defect. Approximately 36,000 babies are born with a defect each year. Only 15-20% of all CHDs are related to known genetic conditions.   A lot of people think that mothers or fathers must have done something wrong to cause their children’s hearts to be malformed. That is seldom the case. There are some known illnesses, medical conditions and drugs that can increase the risk of having a child with a heart defect, but most of the time, the doctors don’t know why our children are born with heart defects.  Rarely the ingestion of some drugs and the occurrence of some infections during pregnancy can cause defects. Because the heart is formed so early in pregnancy, the damage may occur before most women know they are even pregnant.

How can I tell if my baby or child has a congenital heart defect?

Severe heart disease generally becomes evident during the first few months after birth. Some babies are blue or have very low blood pressure shortly after birth. Other defects cause breathing difficulties, feeding problems, or poor weight gain. Minor defects are most often diagnosed on a routine medical check up. Minor defects rarely cause symptoms. While most heart murmurs in children are normal, some may be due to defects.

How serious is the problem?

Congenital heart defects are the most common birth defect and are the number one cause of death from birth defects during the first year of life. Nearly twice as many children die from congenital heart disease in the United States each year as die from all forms of childhood cancers combined. In 2005, 192,000 life-years were lost before age 55 in the United States due to congenital heart disease. In 2004, hospital costs totaled $2.6 billion.

Are things improving?

Definitely. Overall mortality has significantly declined over the past few decades. For example, in the 1960s and 1970s the risk of dying following congenital heart surgery was about 30 percent and today it is around 5 percent.

How well can people with congenital heart defects function?

Virtually all children with simple defects survive into adulthood. Although exercise capacity may be limited, most people lead normal or nearly normal lives. For more complex lesions, limitations are common. Some children with congenital heart disease have developmental delay or other learning difficulties.

What is the social/financial impact of congenital heart defects?

Successful treatment requires highly specialized care. Severe congenital heart disease requires extensive financial resources both in and out of the hospital. Children with developmental delay also require community and school-based resources to achieve optimum functioning.

What is the impact of congenital heart disease on families?

The presence of a serious congenital heart defect often results in an enormous emotional and financial strain on young families at a very vulnerable time. Patient/family education is an important part of successful coping.

How can I make a difference?

Anyone can make a difference in the life of a person or family with CHD. You can offer financial support for local support groups in your area, appeal to your legislators to votes for CHD research, volunteer at your local hospital in the cardiac unit or donate blood to United Blood Service. There are literally thousands of families with child that has some form of CHD. You can keep them in your thoughts as they go through their own unique journey of CHD.

QUICK FACTS:

  • About 36,000 children are born each year with a heart defect.  Most children can benefit from surgery even if the defect is very severe.  When surgery is necessary, many medical treatments are available to help the heart work properly.  There is nothing that parents could of done to have prevented the heart defect.  -American Heart Association
  • Nine of every 1,000 infants born each year have a heart defect. About 650,000 to 1.3 million Americans with cardiovascular defects are alive today. Though research is ongoing, at least 35 defects have now been identified. (American Heart Association)
  • More than 32,000 infants (one out of every 125 to 150) are born with heart defects each year in the United States. The defect may be so slight that the baby appears healthy for many years after birth, or so severe that its life is in immediate danger.  (March of Dimes)
  • Heart Defects are among the most common birth defect and are the leading cause of birth defect related deaths. (March of Dimes)
  • Congenital Heart Defects are the #1 cause of birth defect related deaths. (March of Dimes)
  • About 1 out of every 110 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year)  (Children’s Heart Foundation)
  • Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined.
  • This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. (Children’s Heart Foundation)