Health Supervision for Adolescents and Young Adults

With improved treatment, people with CHDs are living longer, with over 85% - 90% of children born with CHDs living into adulthood. This varies widely by type of defect, however. Survival for severe two-ventricle lesions such as transposition of the great arteries is close to 98%. On the other hand, for the most severe defects such as hypoplastic left heart syndrome, survival to even 5 years can be as low as 38%. However, much of the mortality is in the first year. Among those with hypoplastic left heart syndrome who survive to one year of age, survival to adolescence and adulthood approaches 90%.

Following guidelines for coordinated and continued care has been shown to decrease mortality and thus may improve lifespan, health and quality of life. However, studies have shown that individuals with CHDs often fall out of appropriate care. CHD is a lifelong condition that requires specialized care. Congenital cardiology care is important to address nutritional needs, exercise, intellectual disabilities and many cardiac-specific risk factors. Physicians that specialize in CHD have advanced training in this area and are better able to recognize health issues associated with the CHD. Access these resources for parents, youth and adults.

College as a Student with a Congenital Heart Defect: Top Things to Know

There are ways patients and their cardiologists can prepare for the college transition. Helping Your CHD Patients Prepare for College: Top ‘To-Dos’ (PDF) and College as a Student with a Congenital Heart Defect: Top Things to Know (PDF) have been developed to assist with the transition. Both handouts provide tips on how to prepare for college with a CHD and what to do while at college to ensure that patients stay heart healthy. Information for parents is also available as they partner with both providers and young adults through the transition process. Patients born with a congenital heart defect (CHD) are living longer with congenital heart disease (CHD) because of better pediatric cardiology care and surgeries. As a result, there are more students with CHDs entering college than ever before. College can be demanding for anyone, but attending college with a CHD can present its own challenges.

While a student living with CHD can be successful at college, there are considerations to keep in mind when CHD patients are away at school:

• Alcohol and drugs can lead to arrhythmias and heart failure.
• Some CHD patients may have exercise restrictions.
• Some forms of contraception can be dangerous for some female CHD patients.
• Patients with CHDs are at a higher risk of neurodevelopmental disabilities, which can impact learning.
• Caffeine can promote arrhythmias.

Working with College Health Providers

Students may turn to college health providers for medical care. It is important to that college health providers be aware of student’s CHDs so that they can monitor symptoms and signs that may be a result of CHD complications. They can also help facilitate the transition to adult providers of the students are attending college away from home.

A case study College students with congenital heart disease: A critical time for transition (Journal of American College Health, April 2018) tells the story of a college student who visited the college health clinic because of persistent headaches. As it turns out, the headaches were a result of high blood pressure associated with complications from the patient’s CHD. In addition to the patient’s story, the authors of the case study discuss some of the unique challenges that college health providers may face when caring for students with CHDs.

Reproductive Health in Young Women with Congenital Heart Defects

CHD is the most common form of heart disease during pregnancy in the United States. Because pregnancy among women with CHD may increase the risk of maternal and infant morbidity and mortality, guidelines have been developed for the management of pregnancy and preconception care. Women with CHD should discuss their health concerns with an Adult Congenital Heart Disease (ACHD) cardiologist before becoming pregnant to determine how the pregnancy may affect them or the future baby.

Multiple types of birth control are available for women with CHD. Each type has risk and benefit that vary with the underlying heart condition or type of repair. For example, estrogen-containing birth control can increase the risk of clot formation and is not appropriate for patients with an underlying risk of clotting such as those with mechanical valves or who have had a Fontan operation.

If a woman with CHD is pregnant, it is recommended that she have an evaluation by a specialized multi-disciplinary care team at the time of pregnancy to formulate a care plan. As previously stated, CHD occurs in about 1% of births, with increased risk to 3-8% depending on parental CHD. Thus, fetal echocardiography is recommended at approximately weeks gestation to screen for a CHD in the fetus.

Reproductive health information for women with CHD

• Birth Control for Young Women with a CHD
• Preconception Counseling for Women with a CHD
• Planning a Healthy Pregnancy with a CHD
• Genetics and CHDs
• Parenting with a CHD: Why Prioritizing Your Own Health Is Important

Health Supervision for Adults with Congenital Heart Disease

Staying in both primary care and congenital cardiology care is critical for individuals living with a CHD. Although most individuals with CHD require life-long cardiology care, many adults are lost to cardiac follow-up or may experience gaps in care up to 10 years. It is estimated that fewer than 10% of adults who might benefit from adult CHD programs are in such programs. Since 2015 the American Board of Internal Medicine has been certifying Adult Congenital Heart Disease (ACHD) physicians to fill a critical need for specialized healthcare for the growing population of adults with CHD.

As people born with CHDs age, there are a variety of occurring issues that are not often well understood. Recognizing and being aware of these issues are crucial for healthy lifelong care for adults living with CHDs. While many people will feel well, their medical team needs to work with them to maintain health, monitor for secondary conditions (such as arrhythmias) that may develop over time and plan future interventions such as valve replacements in conjunction with college and career ambitions and all stages of life. Although there may be episodes of intense health needs, individuals with CHD can expect, with proper care, to have a job and live a full, active life.

Adult Congenital Heart Disease Clinic Directory provided by the Adult Congenital Heart Association

AHA/ACC Guideline for the Management of Adults with Congenital Heart Disease (Stout KK et. al. J Am Coll Cardiol. 2019)

The lifelong care for people with congenital heart disease initiative is an output of the Congenital Heart Public Health Consortium (CHPHC); it was supported by the Centers for Disease Control and Prevention of the U.S. Department of Health and Human Services (HHS). The contents of the fact sheet are solely the responsibility of the CHPHC and do not necessarily represent the official views of, nor an endorsement by the member organizations of the CHPHC, CDC/HHS, or the U.S. Government.