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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 or Mended Hearts, 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 very 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
- Hirsh JC, et al. Congenital heart disease. In: Doherty GM. Current Diagnosis and Treatment: Surgery. 13th ed. New York, N.Y.: McGraw-Hill; 2010. http://www.accessmedicine.com/content.aspx?aID=5215009. Accessed April 16, 2010.
- Specific cardiac defects. In: Libby P, et al. Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine. 8th ed. Philadelphia, Pa.: Saunders Elsevier; 2007. http://www.mdconsult.com/book/player/book.do?method=display&type=bookPage&decorator=header&eid=4-u1.0-B978-1-4160-4106-1..50064-9--cesec197&displayedEid=4-u1.0-B978-1-4160-4106-1..50064-9--cesec319&uniq=195744492&isbn=978-1-4160-4106-1&sid=984783871. Accessed April 16, 2010.
- Persistent truncus arteriosus. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/print/sec19/ch287/ch287k.html. Accessed April 16, 2010.
- Sondheimer HM, et al. Cardiovascular diseases. In: Hay WW, et al. Current Diagnosis and Treatment: Pediatrics. 19th ed. New York, N.Y.: McGraw-Hill Medical; 2009. http://www.accessmedicine.com/content.aspx?aID=3402846. Accessed April 16, 2010.
- Truncus arteriosus. American Heart Association. http://www.americanheart.org/presenter.jhtml?identifier=11073. Accessed April 16, 2010.
- Congenital heart defects. March of Dimes. http://www.marchofdimes.com/professionals/14332_1212.asp. Accessed April 16, 2010.
- Koenig PR, et al. Congenital coronary artery abnormalities. http://www.uptodate.com/home/index.html. Accessed April 6, 2010.
- Sullivan KE. Chromosome 22q11.2 deletion syndrome: DiGeorge syndrome/velocardiofacial syndrome. Immunology and Allergy Clinics of North America. 2008;28:353.
- Cyanotic congenital heart disease: Lesions associated with increased pulmonary blood flow. In: Kliegman MD, et al. Nelson's Textbook of Pediatrics. 18th ed. Philadelphia, Pa.: Saunders Elsevier; 2007. http://www.mdconsult.com/das/book/body/195744492-3/0/1608/1010.html?tocnode=54483014&fromURL=1010.html#4-u1.0-B978-1-4160-2450-7..50433-3_8277. Accessed April 16, 2010.
- Verhaert D, et al. Truncus arteriosus with aortic arch interruption: Cardiovascular magnetic resonance findings in the unrepaired adult. Journal of Cardiovascular Magnetic Resonance. 2010;12:16.
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