If you or your child has mild Ebstein's anomaly, here are some steps that may help you cope:
Jan. 21, 2016
- Follow up on medical care. Be sure to follow up with your cardiologist or pediatrician for regular evaluations. Be an active participant in monitoring the condition and report any new or worsening signs or symptoms. Timely treatment can keep the condition from becoming worse.
- Take medications as prescribed. Taking medications at the right dose and the right time can help improve symptoms such as racing heartbeats, fatigue and shortness of breath.
- Stay active. Be as physically active as your or your child's doctor allows. Exercise can help strengthen the heart and improve blood circulation. If you're a parent of a child with Ebstein's anomaly, it's natural to want to protect your child from harm. But remember that your child needs to live life as normally as possible. Encourage playtime with breaks as needed. Ask your doctor for a note you can give to your child's teachers or caregivers describing any restrictions on his or her physical activity.
- Develop a support network. Although many people with congenital heart defects lead normal, healthy lives, living with a heart defect isn't always easy, particularly when you or your child needs continued specialized care. The physical, emotional and financial stress of coping with a serious health condition can be overwhelming. Having family and friends you can rely on is critical to successful coping. In addition, you may wish to ask your doctor about local support groups that may be helpful. Support groups can be a great source of practical information, comfort and friendship.
- Attenhofer JCH, et al. Ebstein's anomaly. Circulation. 2007;115:277.
- Fuster V, ed., et al. Hurst's The Heart. 13th ed. New York, N.Y.: The McGraw-Hill Companies; 2011. http://www.accessmedicine.com/resourceTOC.aspx?resourceID=5. Accessed March 12, 2013.
- Crawford MH, ed., et al. Current Diagnosis & Treatment: Cardiology. 3rd ed. New York, N.Y.: The McGraw-Hill Companies; 2009. http://www.accessmedicine.com/content.aspx?aID=3649722. Accessed March 12, 2013.
- Silversides CK, et al. Canadian cardiovascular society 2009 consensus conference on the management of adults with congenital heart disease: Outflow tract obstruction, coarctation of the aorta, tetralogy of Fallot, Ebstein anomaly and Marfan's syndrome. Canadian Journal of Cardiology. 2010;26;e80.
- Zhao W, et al. Pregnancy outcomes in women with Ebstein's anomaly. Archives of Gynecology and Oncology. 2012;286:881.
- Dearani JA, et al. Surgical advances in the treatment of adults with congenital heart disease. Current Opinion in Pediatrics. 2009;21:565.
- Attenhofer Jost CH, et al. Outcome of cardiac surgery in patients 50 years of age or older with Ebstein anomaly. Journal of the American College of Cardiology. 2012;59;2101.
- Vogel M, et al. Ebstein's malformation of the tricuspid valve: Short-term outcomes of the "Cone Procedure" versus conventional surgery. Congenital Heart Disease. 2012;7:50.
- U.S. News and World Report Best Hospitals: Cardiology & Heart Surgery. U.S. News and World Report. http://health.usnews.com/best-hospitals/rankings/cardiology-and-heart-surgery. Accessed March 13, 2013.
- Grogan M (expert opinion). Mayo Clinic, Rochester, Minn. March 17, 2013.
- Dearani JA, et al. Strategies for tricuspid re-repair in Ebstein malformation using the cone technique. The Annals of Thoracic Surgery. 2013;96:202.
- Cook AJ. Decision Support System. Mayo Clinic, Rochester, Minn. April 3, 2014.
- Dearani JA (expert opinion). Mayo Clinic, Rochester, Minn. Aug. 12, 2014.
- Anderson HN, et al. Cone reconstruction in children with Ebstein anomaly: the Mayo Clinic experience. Congenital Heart Disease. 2014;9:266.
- Boston US, et al. Tricuspid valve repair for Ebstein's anomaly in young children: a 30-year experience. The Annals of Thoracic Surgery. 2006;81:690.
- Brown ML, et al. The outcomes of operations for 539 patients with Ebstein anomaly. The Journal of Thoracic and Cardiovascular Surgery. 2008;135:1120.
- Brown ML, et al. Effect of operation for Ebstein anomaly on left ventricular function. The American Journal of Cardiology. 2008;102:1724.
- Raju V, et al. Right ventricular unloading for heart failure related to Ebstein malformation. The Annals of Thoracic Surgery. 2014;98:167.