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Coping and support
By Mayo Clinic staffCaring for a baby with a serious heart problem, such as truncus arteriosus, can be challenging. Here are some strategies that may help make it easier:
- Seek support. Ask for help from family members and friends. Contact nonprofit organizations, such as the American Heart Association, for information about support groups in your area.
- Record your baby's health history. Write down your baby's diagnosis, medications, surgery and other procedures, the dates they were performed, your pediatric cardiologist's name and phone number, and any other important information about your baby's care. It's also helpful to include a copy of the operative report from your child's surgeon in your records. This information will help you recall the care your child has received, and it will be useful to doctors unfamiliar with your child who need to review his or her health history. It will also be helpful when your child moves from pediatric to adult health care.
- Talk about your concerns. You may worry about the risks of vigorous activity, even after your child has had corrective surgery. Talk with the cardiologist about which activities are safe for your child. If some are off-limits, encourage your child in other pursuits rather than focusing on what he or she can't do. If other issues about your child's health concern you, discuss them with your child's doctor or pediatric cardiologist.
References
- Maldonado JA, et al. Congenital thoracic vascular anomalies. Radiologic Clinics of North America. 2010;48:85.
- Persistent truncus arteriosus. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merckmanuals.com/professional/pediatrics/congenital_cardiovascular_anomalies/persistent_truncus_arteriosus.html#v1096866. Accessed Sept. 5, 2012.
- Doherty GM, ed. Current Diagnosis & Treatment: Surgery. 13th ed. New York, N.Y.: The McGraw-Hill Companies; 2010. http://www.accessmedicine.com/content.aspx?aID=5215009. Accessed Sept. 5, 2012.
- What are congenital heart defects? National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/chd/printall-index.html. Accessed Sept. 5, 2012.
- Truncus arteriosus. American Heart Association. http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Truncus-Arteriosus_UCM_307040_Article.jsp. Accessed Sept. 5. 2012.
- Congenital heart defects. March of Dimes. http://www.marchofdimes.com/baby/birthdefects_congenitalheart.html. Accessed Sept. 9, 2012.
- Infective endocarditis. The American Heart Associaton. http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/TheImpactofCongenitalHeartDefects/Infective-Endocarditis_UCM_307108_Article.jsp. Accessed Sept. 9, 2012.
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