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Coping and support
By Mayo Clinic staffIf you or your child has mild Ebstein's anomaly, here are some steps that may help you cope:
- 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 doctor allows. Exercise can help strengthen your heart and improve your 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.
References
- Attenhofer Jost CH, et al. Ebstein's anomaly. Circulation. 2007;115(2):277-285.
- Pflaumer A, et al. Symptomatic neonates with Ebstein anomaly. Journal of Thoracic and Cardiovascular Surgery. 2004;127(4):1208-1209.
- Kapusta L, et al. Ebstein's anomaly: Factors associated with death in childhood and adolescence: A multi-centre, long-term study. European Heart Journal. 2007;28(21):2661-2666.
- Brown ML, et al. Functional status after operation for Ebstein anomaly: The Mayo Clinic experience. Journal of the American College of Cardiology. 2008;52(6):460-466.
- Chen JM, et al. Early and medium-term results for repair of Ebstein anomaly. Journal of Thoracic and Cardiovascular Surgery. 2004;127(4):990-999.
- Palmen M. Long-term follow-up after repair of Ebstein's anomaly. European Journal of Cardio-Thoracic Surgery. 2008;34(1):48-54.
- Agarwala BN, et al. Ebstein's anomaly of the tricuspid valve. http://www.uptodate.com/index. Accessed Sept. 29, 2008.
- Ebstein's anomaly. American Heart Association. http://www.americanheart.org/presenter.jhtml?identifier=11075. Accessed Oct. 2, 2008.
