Living with a Congenital Heart Defect

Many adults with some types of CHDs need to be cared for by physicians with additional training in caring for adults with CHDs. To help find a provider with this expertise, visit the Adult Congenital Heart Association’s Clinic Directory.

As medical care and treatment have improved, babies and children with CHDs are living longer and healthier lives. Most are now living into adulthood. Ongoing, appropriate medical care can help children and adults with a CHD live as healthy as possible.

It is important for parents of children with a heart defect and adults living with a heart defect to talk with a heart doctor (cardiologist) regularly. Regular visits with a cardiologist are important, because they allow the parents of children with heart defects to make the best possible choices for the health of their child. These visits also allow adults living with a heart defect to make the best possible choices for their own health.

Children and adults with CHDs can help with their health care by knowing their medical history, including the:

Type(s) of heart defect(s) they have.
Procedures or surgeries they have had performed.
Medicines and doses of these medicines that they are prescribed currently and were prescribed in the past.
Type(s) of medical care they are receiving now.

As children transition to adult health care, it is important to notify any new healthcare provider(s) about the child’s CHD. Ongoing appropriate medical care for their specific heart defect will help children and adults with a CHD to live as healthy a life as possible.

Stories: Living with a Congenital Heart Defect

William’s Story

I was born with a heart defect, tetralogy of Fallot, in 1954. My parents were told that I would not survive even a year. At that time, the option of surgery was new and very few doctors were skilled in this type of procedure. In 1966, at the age of eleven, I had corrective surgery. The medical care had advanced and I was very lucky. I was doing well until May of 1969, when we discovered that my heart rate was dangerously low: less than 30 beats per minute. So, on May 21, 1969, I got my first pacemaker. Again, because of new developments in medical care, I was lucky. Advances in pacemaker technology have continually improved my quality of life. Today, I am 58 years old and have an implanted cardiac defibrillator.

Due to the advances in medical care, today, children can get the care they need within the first few weeks of life. If I was born today with the same heart defect, the surgery would be done at 4-8 weeks of age. As the medical community learns and moves forward, people with heart defects have and will benefit as a result. Now, we live longer, healthier lives. However, our surgery is not a total cure, and, as we age, we still suffer effects of these conditions. Continued medical care and ongoing research is vitally important to each of our lives.

Care Across the Lifespan

Affordable Care Act

Affordable Care Act: Improving the Lives of People with Congenital Heart Defects

People with congenital heart defects can require a great deal of care, in many cases lifelong. The American Heart Association recently published a new fact sheet that describes how the Affordable Care Act (ACA) is already benefiting persons and families affected by congenital heart defects. Click here to learn more from the American Heart Association or visit www.healthcare.gov .

At this time, even with improved treatments, many people with a CHD are not cured, even if their heart defect has been repaired. As a person with a heart defect grows and gets older, further heart problems may occur. Additional medications, surgeries, or other procedures may be needed after the initial childhood surgeries. Some people with heart defects need lifelong care to stay as healthy as possible and address certain health issues:

Nutrition

Some babies with a CHD can become tired while feeding and might not eat enough to gain weight. Furthermore, because of the extra work that their heart may have to do to compensate for having a defect, some children with CHDs burn more calories. As they grow up, these children might be smaller and thinner than other children. After treatment for their heart defect, growth and weight gain often improve. It is important to talk with a healthcare provider about diet and nutrition.

Medications

Some children and adults with a CHD will need medicine to help with problems associated with their heart defect. For example, some medicines help make the heart stronger, and others help lower blood pressure. It is important for children and adults with a CHD to take medications as prescribed.

Physical activity

Physical activity is an important part of staying healthy, and it can help the heart become strong. Adults and parents of children with a CHD should discuss with their healthcare providers which physical activities are safe for them or their children, respectively, and if there are any physical activities that should be avoided.

Doctor listening to pregnant woman's heart

Pregnancy

Women with CHDs who are considering having a baby should talk with a healthcare provider before becoming pregnant to discuss how the pregnancy might affect them or their baby, or both. Many women with a heart defect have healthy, uneventful pregnancies. However, having a CHD is the most common heart problem for pregnant women. Pregnancy can put stress on the heart of women with some types of heart defects. The woman might need to have procedures done related to her heart condition before becoming pregnant or take certain medications to help her heart during pregnancy. Her baby also might be at risk for having a heart defect, so talking with a genetic counselor could be helpful.

Other Potential Health Problems

Many people with a CHD live independent lives. Some people with a heart defect have little or no disability. For others, disability might increase or develop over time. People with a heart defect might also have genetic problems or other health conditions that increase the risk for disability. People with a CHD can develop other health problems related to their heart defect over time. These problems may depend on their specific heart defect, the number of heart defects they have, and the severity of their heart defect.

Some health problems that might need treatment include:

Infective Endocarditis

Infective endocarditis is an infection in the layers of the heart. If left untreated, it can lead to other problems, such as a blood clot, heart valve damage, or heart failure. Guidelines recommend that individuals with certain heart defects take oral antibiotics before having certain procedures, such as dental or surgical procedures. However, these guidelines have been updated, and many people with a CHD, such as those with valve stenosis or an unrepaired ventricular septal defect, no longer need to take antibiotics before procedures. Each person should discuss his or her condition with the doctor to find out if antibiotics are recommended for him or her.

Arrhythmia

Arrhythmia is a problem with how the heart beats. The heart can beat too fast, too slow, or irregularly. This can lead to a problem with the heart not pumping enough blood out to the body and can increase the risk for blood clots. Some people with a heart defect can have an arrhythmia associated with their heart defect or as a result of past treatments or procedures for their heart defect. Some people can have an arrhythmia even in the absence of any heart defects.

Pulmonary Hypertension

Pulmonary hypertension is high blood pressure in the arteries (blood vessels) that lead from the heart to the lungs. Certain heart defects can cause pulmonary hypertension, which forces the heart and lungs to work harder. If the pulmonary hypertension is not treated, over time the right side of the heart can become enlarged, and heart failure can occur.

Liver Disease

People with single ventricle heart defects can develop liver disease associated with their heart defect or as a result of past treatments or procedures for their heart defect. It is important for people with this type of heart defect to see a healthcare provider regularly to stay as healthy as possible.

Other Conditions

As adults with CHDs age, they can get other diseases of adulthood, such as diabetes, obesity, or atherosclerosis (buildup of cholesterol in the arteries). However, because of the problems associated with a CHD, these diseases might affect adults with a CHD differently from adults without a CHD. Therefore, they must have annual follow-up visits with cardiologists who are trained to care for adult patients with a CHD.