Living with a Congenital Heart Defect

As medical care and treatment have advanced, infants and children with a congenital heart defect are living longer and healthier lives. Many now are living into adulthood.

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 visitwww.healthcare.gov

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 throughout their lives about treatments, medicines, and the ongoing and long-term care for their specific condition. This is helpful to make the best possible choices for the health of their child or their own health. It is particularly important to remember that adults with these conditions need to be cared for by physicians with additional training in not only cardiology, but also in caring for adults with congenital heart defects. When a person is talking with a heart doctor, it is important for them to remember to:

Ask the doctor to explain if they don’t understand a medical term or concept.
Take notes and ask questions during visits to the doctor.

Children and adults with a congenital heart defect can help with their health care by knowing their medical history, including the:

Type of heart defect they have.
Procedures or surgeries they have had performed.
Medicines that they are prescribed currently and were prescribed in the past.
Type(s) of care they need.

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

Living with a Congenital Heart Defect: William’s Story

Old photograph of WilliamCamilleri on a hobby horse

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.

Ongoing Medical Care

At this time, even with improved treatments, many people with a congenital heart defect are not cured. Routine checkups will be needed to stay as healthy as possible. Further operations also might be needed after initial childhood surgeries. Routine checkups can help address certain health issues:

Nutrition

Some babies with a congenital heart defect can become tired while feeding and might not eat enough to gain weight. 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 health care provider about diet and nutrition.

Medications

Some children and adults with a congenital heart defect will need medicines 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 congenital heart defect 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 congenital heart defect should discuss with their health care providers which physical activities are safe for them or their children, respectively, and if there are any physical activities that should be avoided.

Pregnancy

For women with a congenital heart defect considering having a baby, it is important that they talk with a health care provider before becoming pregnant to discuss how the pregnancy might affect her or her baby, or both. Many women with a heart defect and their babies are fine. However, having a congenital heart defect 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. Her baby also might be at risk of having a heart defect, so talking with a genetic counselor could be helpful.

Other Health Problems

Many people with a congenital heart defect live typical 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 congenital heart defect can develop other health problems over time. These problems 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

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

Arrhythmia

This is a problem with how the heart beats. With arrhythmia, 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. 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.

Pulmonary Hypertension

This is high blood pressure in the arteries that lead from the heart to the lungs. Certain heart defects can cause pulmonary hypertension, which forces the heart and lungs to work harder. Over time, this will make the heart weak and the pulmonary hypertension might need to be treated.

Other Conditions

As adults with congenital heart defects age, they can acquire other diseases of adulthood, such as diabetes, obesity, or atherosclerosis (buildup of cholesterol in the arteries). However, these diseases might affect adults with a congenital heart defect differently than adults without a congenital heart defect. Therefore, they must have annual follow-ups with heart doctors (cardiologists) who are trained to care for adult patients with a congenital heart defect.

Resources

Adult Congenital Heart Association

The Adult Congenital Heart Association is a national organization providing education and support services for adults with congenital heart defects and their families. They are focused on the long-term needs of adults with congenital heart defects, providing education, outreach, and advocacy.

American Heart Association

The American Heart Association offers information about the effects of and risks for congenital heart defects, as well as symptoms and treatment for children with congenital heart defects. This website also offers information about specific types of congenital heart defects.

Congenital Heart Information Network

The Congenital Heart Information Network is a national organization providing education, support services, and financial assistance resources. It helps families of children with a congenital heart defect or acquired heart disease, as well as adults living with a congenital heart defect.

Congenital Heart Public Health Consortium

The Congenital Heart Public Health Consortium is a unique collaboration that brings together families, experts, and organizations to address congenital heart defects through surveillance, research, education, health promotion, advocacy, and policy development.