Discussion Forum
A place for registered ACHA members to discuss issues with other members of the ACHA community and provide and receive support.

Special Topics and Concerns


An arrhythmia is an abnormal heart rhythm, either fast or slow. It can be in either the upper chambers of the heart (atria) or the lower chamber of the heart (ventricles). The links below will provide you with additional information.

2014 PACES/HRS Expert Consensus Statement on the Recognition and Management of Arrhythmias in Adult Congenital Heart Disease

American Heart Association: Arrhythmias 

SADS Foundation 

Khairy P, Aboulhosn J, Gurvitz MZ, Opotowsky AR, Mongeon FP, Kay J, Valente AM, Earing MG, Lui G, Gersony DR, Cook S, Ting JG, Nickolaus MJ, Webb G,Landzberg MJ, Broberg CS; Alliance for Adult Research in Congenital Cardiology (AARCC).Arrhythmia burden in adults with surgically repaired tetralogy of Fallot: a multi-institutional study. Circulation. 2010 Aug 31;122(9):868-75.

Rotes AS, Connolly HM, Warnes CA, Ammash NM, Phillips SD, Dearani JA, Schaff HV, Burkhart HM, Hodge DO, Asirvatham SJ, McLeod CJ. Ventricular arrhythmia risk stratification in patients with tetralogy of fallot at the time of pulmonary valve replacement. Circ Arrhythm Electrophysiol. 2015 Feb;8(1):110-6. 

Stan MN, Hess EP, Bahn RS, Warnes CA, Ammash NM, Brennan MD, Thapa P, Montori VM. A risk prediction index for amiodarone-induced thyrotoxicosis in adults with congenital heart disease. J Thyroid Res. 2012;2012:210529. 

CHD and Pregnancy

Women with congenital heart defects (CHD) now make up the majority of patients with heart disease seen in pregnancy. Pregnancy is well tolerated in many patients with CHD. However, pregnancy in some cases poses a high risk for significant cardiovascular complications and even death. Any CHD patient contemplating pregnancy should consult with an ACHD specialist.

Heart Disease and Pregnancy
This website provides information for patients and doctors about the risks of pregnancy, as well as management strategies for pregnant women with heart disease

Nationwide Children's CHD and Pregnancy Resource

Cannobio, M, Cetta, F, Silversides, C, Warnes, C, Albouhosn, J, and Coleman, J. Pregnancy after Fontan Operation: Early and Late Outcomes. J Am Coll Cardiol. 2013; 61 (10_S).

Lui GK, Silversides CK, Khairy P, Fernandes SM, Valente AM, Nickolaus MJ, Earing MG, Aboulhosn JA, Rosenbaum MS, Cook S, Kay JD, Jin Z, Gersony DR;Alliance for Adult Research in Congenital Cardiology (AARCC). Heart rate response during exercise and pregnancy outcome in women with congenital heart disease. Circulation. 2011 Jan 25;123(3):242-8.

Ruys TP, Roos-Hesselink JW, Pijuan-Domènech A, Vasario E, Gaisin IR, Iung B, Freeman LJ, Gordon EP, Pieper PG, Hall R, Boersma E, Johnson MR; on behalf of the ROPAC investigators. Is a planned caesarean section in women with cardiac disease beneficial? Heart. 2014 Dec 24.

Electronic Health Records and Health IT

Webinar: Health Information Technology Orientation (September 14, 2011)

Additional information about the benefits of e-Health and electronic health information can be found here (September 2011).

Helping Consumers be Partners in their Own Health (September 9, 2011).

From the ONC Desk: Federal Strategic Plan to Reduce Health IT Disparities (August 25, 2011)

Video from Office of the National Coordinator for Health Information Technology: Advantages of Electronic Health Records (July 18, 2011)

Electronic Medical Record vs Electronic Health Record – What is the Difference?


Endocarditis is an inflammation or infection of the inner lining of the heart. The resources below will provide you with more information.

AHA Guideline
Prevention of Infective Endocarditis. Circulation, 2007; 116: 1736-1754.

Mulder, Barbara JM. Endocarditis in Congenital Heart Disease; Who Is at Highest Risk? Circulation. 2013; 128: 1396-1397

Exercise/Physical Activity

The following resources on exercise and physical activity are available for your information. Please consult your ACHD specialist before starting an exercise program.

Recommendations for Heart Health 

Congenital Heart Defects and Physical Activity 

AHA Scientific Statement
Promotion of Physical Activity for Children and Adults With Congenital Heart Disease. Circulation.2013; 127: 2147-2159

Not Sure What You Have?

Did your parents ever tell you that you that you had heart surgery as a child but you don't know any details about it? Are you unsure why you went to the doctor so much when you were a child? Are you wondering why you have a scar on your chest?

It is possible you were born with a congenital heart defect (CHD). For your continued well-being, it is important to know what type of CHD you have. You might be asking, "How do I find this information?"

There are several things you can do:

  • Ask your parents, siblings, aunt, uncles, or other relatives about your surgery and ask them for the details, such as your doctor’s name or the name of the hospital where you had surgery;
  • Request your medical records from the doctor or hospital where you received care as a child;
  • Make an appointment with an adult congenital heart specialist for a detailed evaluation and diagnosis.

Additional information about CHD can be found in our Resource Center. The ACHA Clinic Directory is also available to members.