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.
Why do congenital heart defects occur? Most of the time we do not know. Unfortunately, scientists do not know all of the causes for congenital (present at birth) heart defects. Although the reason defects occur is presumed to be genetic, only a few genes have been discovered that have been linked to the presence of heart defects. 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 which 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.
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.
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 100 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)