Learn more about CHD Facts and Statistics
What is a Congenital Heart Defect?
By the 28th day of pregnancy, the baby’s heart is formed. During this early stage of pregnancy, the baby’s heart may not form properly, resulting in structural abnormalities known as Congenital Heart Defects. Congenital Heart Defects are an abnormality in any part of the heart that is present at birth.
Common examples include holes in the inside walls of the heart and narrowed or leaky valves. In more severe forms of CHDs, blood vessels or heart chambers may be missing, poorly formed, and/or in the wrong place.
The defect may be so slight that the baby appears healthy for many years after birth, or so severe that his life is in immediate danger.
Heart defects are the most common birth defect and are the leading cause of birth defect-related deaths. However, Congenital Heart Defect research has lead to advances in diagnosis and surgical treatment. These advancements have led to dramatic increases in survival for children with serious heart defects.
What are the typical warning signs of congenital heart defects?
According to the NHLBI, the Centers for Disease Control and Prevention, and the American Heart Association, many congenital heart defects have no signs or symptoms and may be hard to detect. The child’s doctor may hear a murmur (extra or unusual sounds during a heartbeat), but not in all cases. (Note: most murmurs in infants are not a sign of a heart defect.) Many severe congenital heart defects will create signs or symptoms, often soon after birth. They can include:
- Cyanosis (bluish coloring of the tongue, lips, skin and/or fingernail beds)
- Fatigue (note that most babies sleep a lot, but more than “normal”fatigue or tiredness may indicate a heart defect or other medical issue)
- Poor feeding
- Poor weight gain
- Rapid breathing
Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, a Congenital Heart Defect will not be diagnosed until adolescence, adulthood, or through an autopsy.
How common are congenital heart defects?
- Congenital Heart Defects are the #1 birth defect in the world.
- CHDs occur in approximately 1% of births or approximately 40,000 per year.
- Approximately two to three million individuals are thought to be living in the United States with CHDs. Because there is no U.S. system to track CHDs beyond early childhood, more precise estimates are not available.
- Thanks to improvements in survival, the number of adults living with CHDs is increasing. It is now believed that the number of adults living with CHDs is at least equal to, if not greater than, the number of children living with CHDs.
What is the health impact of congenital heart defects?
- CHDs are the most common cause of infant death due to birth defects.
- The earlier a CHD is detected and treated, the more likely the affected child will survive and have less long term health complications.
- Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive.
- Thanks to research, over 85% of babies born with a CHD now live to at least age 18. However, children born with more severe forms of CHDs are less likely to reach adulthood.
- Surgery is typically not a cure for CHDs. Many individuals with CHDs require additional operations and/or medications as adults.
- 40,000 units of blood are used each day, half of this number is used by people with congenital heart defects.
- People with CHDs face a life-long risk of health problems such as issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure, sudden cardiac arrest or stroke.
- People with CHDs are now living long enough to develop illnesses like the rest of the adult population, such as high blood pressure, obesity and acquired heart disease.
- CHDs are now the most common heart problem in pregnant women.
What are the health care challenges related to congenital heart defects?
- In 2009, the hospital cost for roughly 27,000 hospital stays for children treated primarily for CHDs in the U.S. was nearly $1.5 billion. In the same year, hospital cost for roughly 12,000 hospital stays of adults treated primarily for CHD was at least $280 million.
- A significant number of adults with CHD in the U.S. report having problems obtaining insurance and coverage for specialized care.
- Compared to the general population, adults with CHD have 3 – 4 times higher rates of Emergency Room visits, hospitalizations, and Intensive Care Unit stays.
- Fewer than 10% of adults with CHDs in the U.S. who need care from specialty adult CHD centers are receiving this recommended care.
Why is research funding necessary?
- Congenital heart defects are common and deadly, yet CHD research is grossly under-funded relative to the prevalence of the disease.
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHDs.
- Of every dollar the government spends on medical funding, only a fraction of a penny goes to Congenital Heart Defect research.
- Funding research makes a difference. In the last decade, death rates for congenital heart defects have declined by almost 30% due to advances made through research.
- The NHLBI has stated that Congenital Heart Defects are a serious and underappreciated global health problem.
- There are more than 40 different types of CHDs. Little is known about the cause of most of them. There is no known prevention or cure for any of them.
What are some of the most common heart defects, and how are they treated?
- Patent ductus arteriosus (PDA): Before birth, a large artery (ductus arteriosus) lets the blood bypass the lungs because the fetus gets its oxygen through the placenta. The ductus normally closes soon after birth so that blood can travel to the lungs and pick up oxygen. If it doesn’t close, the baby may develop heart failure. This problem occurs most frequently in premature babies. Treatment with medicine during the early days of life often can close the ductus. If that doesn’t work, surgery is needed.
- Septal defect: This is a hole in the wall (septum) that divides the right and left sides of the heart. A hole in the wall between the heart’s two upper chambers is called an atrial septal defect, while a hole between the lower chambers is called a ventricular septal defect. These defects can cause the blood to circulate improperly, so the heart has to work harder. Some atrial septal defects can be repaired without surgery by inserting a thin, flexible tube into the heart and then releasing a device that plugs the hole. A surgeon also can close an atrial or ventricular septal defect by sewing or patching the hole. Small holes may heal by themselves or not need repair at all.
- Coarctation of the aorta: Part of the aorta, the large artery that sends blood from the heart to the rest of the body, may be too narrow for the blood to flow evenly. A surgeon can cut away the narrow part and sew the open ends together, replace the constricted section with man-made material, or patch it with part of a blood vessel taken from elsewhere in the body. Sometimes, this narrowed area can be widened by inflating a balloon on the tip of a catheter (tube) inserted through an artery.
- Heart valve abnormalities: Some babies are born with heart valves that do not close normally or are narrowed or blocked, so blood can’t flow smoothly. Surgeons usually can repair the valves or replace them with man-made ones. Balloons on catheters also are frequently used to fix faulty valves.
- Tetralogy of Fallot: This combination of four heart defects keeps some blood from getting to the lungs. As a result, the blood that is pumped to the body may not have enough oxygen. Affected babies have episodes of cyanosis and may grow poorly. This defect is usually surgically repaired in the early
months of life.
- Transposition of the great arteries: Transposition occurs when the positions of the two major arteries leaving the heart are reversed, so that each arises from the wrong pumping chamber. Affected newborns suffer from severe cyanosis due to a lack of oxygen in the blood. Recent surgical advances make it possible to correct this serious defect in the newborn period.
- Hypoplastic left heart syndrome: This combination of defects results in a left ventricle (the heart’s main pumping chamber) that is too small to support life. Without treatment, this defect is usually fatal in the first few weeks of life. However, over the last 25 years, survival rates have dramatically improved with new surgical procedures and, less frequently, heart transplants
These are the most current up to date statistics but medical professionals and experts are confident the statistics are much higher than what we have today. This is why we need your help. Please learn more about how you can be an advocate.
Children’s Heart Foundation www.childrensheartfoundation.org
Congenital Heart Public Health Consortium http://www.chphc.org/hostedsites/Pages/CHDTOOLS-CHD-Fact-Sheet.aspx
March of Dimes www.marchofdimes.com
American Heart Association www.heart.org