Congenital heart defects (CHDs) are the most common type of birth defect. As medical care and treatment have advanced, babies with a CHD are living longer and healthier lives. Learn more facts about CHDs below.

What are Congenital Heart Defects (CHDs)?

CHDs are present at birth and can affect the structure of a baby’s heart and the way it works. They can affect how blood flows through the heart and out to the rest of the body. CHDs can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).

About 1 in 4 babies born with a heart defect has a critical CHD (also known as critical congenital heart defect). Babies with a critical CHD need surgery or other procedures in the first year of life.

Types

Listed below are examples of different types of CHDs. The types marked with a star (*) are considered critical CHDs.

• Atrial Septal Defect
• Atrioventricular Septal Defect
• Coarctation of the Aorta*
• Double-outlet Right Ventricle*
• d-Transposition of the Great Arteries*
• Ebstein Anomaly*
• Hypoplastic Left Heart Syndrome*
• Interrupted Aortic Arch*
• Pulmonary Atresia*
• Single Ventricle*
• Tetralogy of Fallot*
• Total Anomalous Pulmonary Venous Return*
• Tricuspid Atresia*
• Truncus Arteriosus*
• Ventricular Septal Defect

Signs and Symptoms

Signs and symptoms for CHDs depend on the type and severity of the particular defect. Some defects might have few or no signs or symptoms. Others might cause a baby to have the following symptoms:

• Blue-tinted nails or lips
• Fast or troubled breathing
• Tiredness when feeding
• Sleepiness

Diagnosis

Some CHDs may be diagnosed during pregnancy using a special type of ultrasound called a fetal echocardiogram, which creates ultrasound pictures of the heart of the developing baby. However, some CHDs are not detected until after birth or later in life, during childhood or adulthood. If a healthcare provider suspects a CHD may be present, the baby can get several tests (such as an echocardiogram) to confirm the diagnosis.

Treatment

Treatment for CHDs depends on the type and severity of the defect present. Some affected infants and children might need one or more surgeries to repair the heart or blood vessels. Some can be treated without surgery using a procedure called cardiac catheterization. A long tube, called a catheter, is threaded through the blood vessels into the heart, where a doctor can take measurements and pictures, do tests, or repair the problem. Sometimes the heart defect can’t be fully repaired, but these procedures can improve blood flow and the way the heart works. It is important to note that even if their heart defect has been repaired, many people with CHDs are not cured and require follow-up care.

Causes

The causes of CHDs among most babies are unknown. Some babies have heart defects because of changes in their individual genes or chromosomes. CHDs also are thought to be caused by a combination of genes and other factors, such as things in the environment, the mother’s diet, the mother’s health conditions, or the mother’s medication use during pregnancy. For example, certain conditions a mother has, like pre-existing diabetes or obesity, have been linked to heart defects in the baby. Smoking during pregnancy as well as taking certain medications have also been linked to heart defects.

Living with a CHD

As medical care and treatment have advanced, infants with CHDs are living longer and healthier lives. Many children with CHDs are now living into adulthood. It is estimated that more than two million individuals in the United States are living with a CHD. Many people with a CHD lead independent lives with little or no difficulty. Others might develop disability over time. Some people with a CHD have genetic problems or other health conditions that increase their risk for disability.

Even with improved treatments, many people with a CHD are not cured, even if their heart defect has been repaired. People with a CHD can develop other health problems over time, depending on their specific heart defect, the number of heart defects they have, and the severity of their heart defect. For example, some other health problems that might develop include irregular heart beat (arrhythmias), increased risk of infection in the heart muscle (infective endocarditis), or weakness in the heart (cardiomyopathy). People with a CHD need routine checkups with a cardiologist (heart doctor) to stay as healthy as possible. They also might need further operations after initial childhood surgeries. It is important for people with a CHD to visit their doctor on a regular basis and discuss their health, including their specific heart condition, with their doctor.

Get informed about contraception, preconception health, and pregnancy for people living with heart defects.

A woman’s reproductive system is a delicate and complex system in the body. It is important to protect the health of your reproductive system, from menarche through menopause. If you’re living with a heart defect, you may need specialized medical care to manage your reproductive health and heart health. Learn more about birth control, preconception health, and pregnancy for women living with heart defects.

Birth Control

Birth control, or contraception, is any method, medicine, or device used to prevent pregnancy. Use of birth control may depend on your desire to have children now or in the future. The type of birth control you use may depend on effectiveness, availability (including accessibility and affordability), and acceptability. Some methods are more effective than others, and no one method is best for everyone.

There is limited information on the risks of specific birth control methods for women with heart defects. Some people with certain heart defects who are at increased risk of blood clots may be advised to avoid using estrogen-containing contraceptive methods (i.e. combined birth control pills, patch, ring).

Your healthcare provider can help you decide which type of birth control may be best for you now.

Preconception Health

Preconception health care is medical care before a person becomes pregnant that focuses on increasing the chance of having a healthy pregnancy and healthy baby. Preconception health care is different for every person, depending on their unique needs. For people with heart defects, preconception health care may include assessing overall heart health, determining if any procedures are needed before pregnancy, and discussing the safety of procedures or medications. Based on your individual health, your doctor or healthcare provider will suggest a course of treatment or follow-up care as needed.

Researchers have found that more than 1 in 5 people with a heart defect who became pregnant had not received any of the American Heart Association’s recommended preconception health care in the year before conception. Additionally, almost 1 in 10 women filled prescriptions for cardiac-related medications that may increase the risk of birth defects in the year before they got pregnant.

If you’re thinking about having a baby, talk to your healthcare providers about how you can get ready for pregnancy and discuss all medicines you take, including prescriptions, over-the-counter drugs, herbal and dietary supplements, and vitamins.

Pregnancy

Many people with heart defects become pregnant. Pregnancy can put extra stress on your heart, as your heart is working harder than usual to pump blood to you and your baby. By preparing for pregnancy and following up regularly with your cardiologist (or heart doctor) during pregnancy, most people with a heart defect can safely become pregnant and have a healthy baby.

Compared with women without heart defects, women with heart defects may have a higher risk for some pregnancy-related issues, such as

• Anemia;
• Hemorrhage; or
• High blood pressure.

Compared with non-pregnant women with heart defects, pregnant women with heart defects had more documented health issues, such as

• Diabetes;
• Infectious diseases; or
• Mental health

Researchers have also found that people with heart defects were more likely to deliver their baby too early (before 37 weeks of pregnancy) compared with people without heart defects. Although rare, people with heart defects may also be more likely to experience stillbirth than people without heart defects.

With appropriate medical care and treatment, many people with heart defects can have a healthy pregnancy. If you are considering having a baby, talk with your healthcare provider before becoming pregnant to discuss how pregnancy might affect you.

Adults with congenital heart defects have a higher risk of pregnancy complications. If you are planning to become pregnant, or are trying to prevent pregnancy, talk to your doctor about the following:

• Medicines. Some medicines prescribed to adults with congenital heart defects are not safe to take during pregnancy, as they may harm your baby.
• Tests to evaluate your heart. During pregnancy, a woman’s organ systems, including the heart and blood vessels, go through major changes to support the growing baby. Your doctor may order extra tests before pregnancy to determine whether your heart can tolerate pregnancy. Most women with congenital heart defects can have normal pregnancies.
• Genetic testing. People who have congenital heart defects are at increased risk for miscarriage and of having babies with congenital heart defects. Your doctor may suggest that you speak with a genetic counselor or have genetic tests done. If you are already pregnant, your doctor may run tests, like a fetal echocardiography, to look for congenital heart defects in your unborn baby.
• Birth control. Some women with congenital heart defects should avoid some methods of birth control. Talk to your doctor about the best method for you.

Importance of Newborn Screening for Critical Congenital Heart Defects

Screening for critical congenital heart defects (critical CHDs) can help identify some babies with a critical CHD before they go home from the birth hospital. This allows these babies to be treated early and may prevent disability or death early in life.

Number of Babies that Screening Can Help

Some babies with a critical CHD appear healthy at first and may be sent home before their critical CHD is detected. Newborn screening for critical CHDs is a tool that works with prenatal diagnosis and physical exams after birth to improve detection of critical CHDs. The number of babies with an undiagnosed critical CHD that might be found using pulse oximetry depends on the level of nursery care and the type of critical CHD, among other factors. CDC estimates that, each year, about 875 more newborns with a critical CHD could be identified at birth hospitals using pulse oximetry newborn screening, but an equal number (880 babies) might still be missed each year in the United States, most of whom will have critical CHD types (coarctation of the aorta or interrupted aortic arch, tetralogy of Fallot, or transposition of the great arteries) less likely to be detected through pulse oximetry newborn screening.

Importance of Critical CHD Diagnosis Before Leaving the Hospital

When babies with an undiagnosed critical CHD leave the hospital, they might have very serious problems, such as cardiac collapse (when a baby’s heart stops working properly and can’t get oxygen to the body) or death within the first few days or weeks they are at home.

If a critical CHD is diagnosed before a baby leaves the hospital, doctors can provide care and treatment that may prevent later health problems or even death. They can also better plan treatment for a baby with a critical CHD, helping the baby have surgery or other treatment when he or she is stable, not in an emergency situation. Babies that have a critical CHD diagnosed after they leave the hospital tend to be admitted to the hospital more frequently, spend more time in the hospital, and have higher hospital costs compared with babies that had a critical CHD diagnosed in the hospital. Mandated critical CHD screening using pulse oximetry reduces early infant deaths from critical CHD by 33%, or 120 early infant deaths from critical CHD averted per year.

Costs

There are always costs when screening tests are done. The cost of critical CHD screening depends on many factors, such as the number of births in a hospital, the type of equipment used, and how long the screening takes. The costs of critical CHD screening is about $5 to $14 for each newborn baby screened.

Other costs, in addition to those of the screen itself, are important as well. Babies that fail the critical CHD pulse oximetry screen will need to have extra medical tests, might spend more time in the hospital, or be transferred to another hospital for specialized treatment. These costs need to be considered when looking at total costs for critical CHD screening programs. However, if doctors confirm that these babies do have a critical CHD, they will also receive the care they need in a timely manner and possibly avoid other costs like emergency care.

Overall, pulse oximetry screening is cost effective, which means that the health benefits of screening outweigh the costs of screening. The CDC estimates a cost of $12,000 for every year of life gained by critical CHD screening.

Jodi's Story

“After a normal pregnancy, Alex was born at 40 weeks via C-section. Everything seemed fine at first. After some time together, Alex was taken to the nursery to get cleaned up, but after 3 hours he still was not back with us. Finally, the pediatrician came in and explained that when a nurse was getting him dressed to come back to our room, she noticed that his nail beds were turning blue. So, she screened him using pulse oximetry.”

“Not having any idea what he was talking about, I told him that my husband and I have had asthma since childhood. He assured me that was not the problem and that they felt it was a problem with his heart. After a brief amount of time and an echocardiogram, it was determined that Alex had tricuspid atresia with pulmonary atresia.”

“During the first few months of his life, Alex underwent two open heart surgeries, and he will need a third surgery. But now, Alex is an active and playful toddler. He is walking, running, talking, eating, laughing and trying to toilet train himself! He also enjoys reading and playing with his sister. Even though we have had a roller coaster of emotions, I cannot imagine how different our lives would be if that nurse did not notice the change in his color and if his oxygen level was not checked.”

Congenital heart defects are present at birth and can affect the structure of a person’s heart and its ability to work properly. As medical care and treatment have advanced, people with heart defects are living longer and healthier lives, many into adulthood. Learn about heart defects and about Mary, an adult living with a heart defect. You can also learn what CDC is doing to improve the lives of people with heart defects.

What Are Heart Defects?

Heart defects are present at birth and can affect the structure of a person’s heart and its ability to work properly. They can also affect how blood flows through the heart to the rest of the body. Heart defects can vary from mild (such as a small hole in the heart) to severe (such as missing or poorly formed parts of the heart).

Some affected people might need one or more surgeries on the heart or blood vessels. It is important to note that even with these treatments, many people with heart defects are not cured, as heart defects are lifelong conditions. As a person with a heart defect grows and gets older, further heart problems may occur.

How Many People Are Born with Heart Defects?

Heart defects are the most common type of birth defect, affecting nearly 1% of births – or about 40,000 births – per year in the United States. It is estimated that more than two million people in the United States are living with heart defects.

Mary’s Story — In Her Own Words

Mary was born with multiple congenital heart defects. As a Doctor of Nursing Practice, she wants to empower her patients to take an active role in their health. Read her story below.

I was born in 1991. My mom had a normal pregnancy, and I seemed to be a healthy baby. My dad, a medical residency student at the time, anxious to hear my heartbeat, heard a heart murmur and called a pediatric cardiologist. I was diagnosed with hypoplastic right heart syndrome, atrial septal defect, transposition of the great vessels, and isthmus coarctation of the aorta. This combination of defects in one baby is incredibly rare. I was admitted to the neonatal intensive care unit (NICU), and at 9 days old, I had my first open heart surgery. I would go on to have three more surgeries by the time I was 2 years old.

From ages 2 through 15 years, I remained relatively healthy. I had routine checkups with my pediatric cardiologist that included regular echocardiograms and electrocardiograms. I would sometimes have to wear a Holter monitor, a device that measures and records the heart’s activity, while enduring stress tests. This was my normal.

When I was 15 years old, I learned I would need a pacemaker and defibrillator because my heart rate was too slow, causing me to feel fatigued and out of breath easily. Shortly after I turned 16 years old, I had surgery to place my pacemaker and defibrillator in my abdomen. One month after surgery, I went to my high school junior prom with my date, who would, years later, become my husband.

Receiving a pacemaker/defibrillator as a teenager was frightening. I thought, “I’m dying,” because I only knew of older individuals having pacemakers. Having a pacemaker restricted me from jumping on a trampoline, riding rollercoasters, and riding horses, but these were things that I could live without doing.

Due to the pacemaker/defibrillator, my doctors increased the number of medications I was taking. Although my pacemaker was helping to regulate my heartbeat, I was still having irregular heartbeats. I needed medication to help my heart function properly.

The defibrillator was placed to help shock my heart back into rhythm if it slowed down or stopped beating. I remember asking the nurse practitioner that set up my pacemaker/defibrillator to describe the feeling of being shocked. She told me, “like getting kicked by a donkey.” I had never been kicked by a donkey, and had no intention of experiencing it.

Unfortunately, I was shocked two separate times after they set up my pacemaker/defibrillator. The first time was 2 months after having my pacemaker/defibrillator placed. My settings were wrong, but this was no fault of the doctors. Setting these devices is often trial and error. Every single person is different, and they set the pacemaker/defibrillator for what a person of your age and condition would typically use. This may not be what you need. The second time I was shocked, I was home alone after attending nursing school that day, and my device shocked me multiple times. I was able to call 911 and crawl to the door to let the paramedics in. This occurred the day before my first day of nursing school clinical work, of which I was required to attend. My dad drove me to the hospital because I wasn’t allowed to drive so soon after being shocked. When I walked in, the instructor looked at me as if she saw a ghost. I eventually graduated, and went on to become a Doctor of Nursing Practice (DNP).

Given my experiences, I understand what it’s like to be a patient, which has helped me as a nurse. I learned to become an advocate for my own health. I want to empower my patients to take an active role in their health and become advocates for themselves, too. I love educating people and spreading awareness, and being a nurse practitioner allows me to do that.

I got married shortly after receiving my DNP. I met my husband when we were in high school, so he has been through a lot with me. While we were dating, I made the decision to have my tubes tied because pregnancy can be risky for some women with heart defects. Before we got married, I wanted to make sure my husband was okay with this decision. We both agreed that adoption or surrogacy were options we were open to considering if we wanted to have children in the future. For now, we have two lively and loveable dog-babies, Brindle and Rogan.

Congenital heart defects are present at birth and can affect the structure of a person’s heart and its ability to work properly. As medical care and treatment have advanced, people with heart defects are living longer and healthier lives, many into adulthood. Read our five things to know about heart defects.

Heart defects are common.

Heart defects are the most common type of birth defect, affecting nearly 1% of births – or about 40,000 births – per year in the United States. It is estimated that more than two million people in the United States are living with heart defects.

Heart defects can be diagnosed before birth, at birth, or after a baby leaves the hospital.

Some heart defects can be found during pregnancy by looking at ultrasound pictures of the heart of the developing baby. Other heart defects aren’t detected until birth through newborn screening, or later in life, during childhood or adulthood. Screening newborns for heart defects allows them to be treated early and may prevent other health problems or early death. A CDC study found that, as of 2018, all 50 states and Washington, D.C. have newborn screening programs that test for critical congenital heart defects.

Heart defects are costly.

In the United States, hospital costs can exceed $9.8 billion a year to care for people living with heart defects. Families of children with heart problems who have special healthcare needs may experience high out-of-pocket medical expenses, impacts on employment, and other financial problems. Although costs involved in living with a heart defect are often unpredictable, planning for these expenses as early as possible can help your family stay financially healthy. Ask your healthcare provider for information about any financial assistance programs in your state.

People with heart defects are living longer.

As medical care and treatment have advanced, people with heart defects are living longer and healthier lives. Overall, there are slightly more adults living with heart defects than children. As survival rates have increased, researchers are continuing to look at health issues and needs across the lifespan to help ensure people born with heart defects are getting needed care at every stage of life.

People with heart defects need lifelong specialty care for their hearts.

Even with improved treatments, many people with a heart defect are not cured, even if their heart defect has been repaired. People with a heart defect can develop other health problems over time, depending on their specific heart defect, the number of heart defects they have, and the severity of their heart defect. Transition to adult health care can be tricky for teens and young adults living with a heart defect; they may need to navigate changes in insurance, or transition from a pediatric specialist (whom they may have known all their lives) to an adult specialist. Some may gain responsibility for their own care decisions. It is especially important for people with heart defects and their families to begin planning for this transition during childhood so they can lead healthy, independent lives as adults. Ongoing appropriate medical care for their heart defect will help children and adults live as healthy a life as possible.