Living With Congenital Heart Defects

Below are some issues you may face as an adult living with congenital heart defects (CHDs). Choose a topic to view information designed to help you navigate each issue.

Pregnancy and Family Planning

Women with CHDs should discuss birth control options with both their gynecologist and their adult CHD (ACHD) cardiologist. Many women with CHDs are not restricted in their birth control options, but some women with more complex CHDs should not use estrogen-containing hormonal contraceptives. Longer-acting progesterone-only options, barrier methods and intrauterine devices (IUDs) may be recommended for these patients.

Download the Adult Congenital Heart Associations’ article, “Birth Control for Women With Congenital Heart Disease” (PDF 268 KB)

Disability Issues

Some adults with CHDs are unable to work because of their condition and may consider applying for disability benefits. The Emory Adult Congenital Heart Center (EACH) has put together some tips and information to help you with this process.

Download the Social Security Disability Benefits Information Sheet (PDF 108 KB).

Pre-Existing Condition Health Insurance Plan (PCIP)

If you have been denied health insurance because of your congenital heart condition, you may be eligible for the PCIP. To qualify, you must:

• Be a citizen or national of the United States or lawfully present in the United States
• Have been uninsured for at least the last six months before you apply
• Have had a problem getting insurance due to a pre-existing condition

Visit the Pre-Existing Condition Insurance Plan Web site for more information.

Patient Success Stories

The world-class treatment at the Emory Adult Congenital Heart Center has generated responses from many grateful patients. Enjoy success stories from our wonderful patients.

Educational Publications
Balancing Your Life

Interact with Balancing Your Life With Congenital Heart Disease, an online educational book written by a member of the Emory Adult Congenital Heart Center team.

The Beat Goes On

The Beat Goes On!, an online book for young adults living with a pacemaker or ICD.

To order your own copy, call Pritchett & Hull at 770-451-0602 or 800-241-4925.

Other Patient Resources

If you have been diagnosed with a congenital heart defect (CHD) or are considering surgery, the following Web sites can provide information to help you take an active role in your health care and become a more valuable member of your own treatment team.

ACHAAdult Congenital Heart Association (ACHA)
The ACHA is a non-profit organization dedicated to supporting adults affected by CHDs and addressing unmet long-term needs through education, advocacy and research support.

International Society for Adult Congenital Heart Disease (ISACHD)
In addition to promoting excellence and supporting the advancement of knowledge and training for medical professionals in the area of adult CHDs (ACHDs), the ISACHD also provides information to help patients understand their condition and make informed decisions about their treatment.

American Heart Association (AHA) — Congenital Cardiovascular Defects
The AHA is a national non-profit organization dedicated to reducing death and disability due to cardiovascular disease and stroke. This page provides a basic overview of CHDs, as well as more detailed information about specific conditions.

Canadian Adult Congenital Heart (CACH) Network
The CACH Network provides in-depth information to help adults living with CHDs understand and manage all aspects of their condition. In addition, the organization promotes the advancement of skill and knowledge among health care professionals in the area of ACHDs.

Congenital Heart Information Network (CHIN)
CHIN is a non-profit organization that seeks to provide comprehensive support services and resources for people affected by CHDs.

New York Online Access to Health (NOAH): Adult Congenital Heart Defects
NOAH provides access to accurate, unbiased consumer health information for patients in English and Spanish. This page includes links to a number of helpful educational resources for adults living with CHDs.

Emory HealthConnection