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.
All adults living with a heart defect and parents of children with a heart defect should 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 important to make the best possible choices for their health or the health of their child. If they don’t understand a medical term or concept, they should ask their health care provider to explain. They also should 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.

Ongoing Medical Care

At this time, even with improved treatments, many people with a congenital heart defect are not cured. They will need routine checkups to stay as healthy as possible. They also might need further operations 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

As women with a congenital heart defect reach the age to have babies, it is important for them to 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 also might 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, depending on their specific heart defect, the number of heart defects they have, and how severe their heart defect is.
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. 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.

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.

Living with a Congenital Heart Defect: One Family's Story

As Susan May welcomed the birth of her son Nick, she thought everything seemed normal. However, as she asked, “Is my baby fine?” the initial smiles surrounding her quickly changed to whispers and concerned looks. Susan did not realize then that the adventure had only begun as tests soon revealed that her baby had a congenital heart defect.
After Nick had three difficult open heart surgeries, his doctors decided that he could survive only with a heart transplant. Just before his second birthday, Nick received his new heart. Although Nick is 21 years old now and doing well, he and his parents still worry about transplant rejection and the future. “I think about the pain and frustration we have been through, and my hope for other families is that we can find out what causes congenital heart defects so that we can prevent them,” added Susan.