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Coping and support
By Mayo Clinic staffCaring for a child with a congenital heart defect can be scary and challenging. Here are some strategies that may help make it easier:
- Seek support. Ask for help from family members and friends. Talk with your child's cardiologist about support groups and other types of assistance that are available near you.
- Record your baby's health history. You may want to write down your child's diagnosis, medications, surgery and other procedures and the dates they were performed, the name and phone number of your child's cardiologist, and any other important information about your child'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 for doctors who are unfamiliar with your baby to review his or her health history. This information will also help as your child transitions from pediatric doctors to adult doctors.
- Talk about your concerns. As your child grows, you may worry about activities in which he or she can safely participate. Many children will have no limitations, but talk with the cardiologist about which activities are best 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 cardiologist, too.
Although every circumstance is different, remember that many children with congenital heart defects grow up to lead healthy lives.
References
- Atrioventricular septal defect. The Merck Manuals: The Merck Manual for Healthcare Professionals. http://www.merck.com/mmpe/print/sec19/ch287/ch287d.html. Accessed March 2, 2010.
- Atrioventricular canal defect. American Heart Association. http://www.americanheart.org/presenter.jhtml?identifier=132. Accessed March 2, 1010.
- Congenital heart defects. The National Heart, Lung and Blood Institute. http://www.nhlbi.nih.gov/health/dci/Diseases/chd/chd_all.html. Accessed March 2, 2010.
- Calabro R, et al. Complete atrioventricular canal. Orphanet Journal of Rare Diseases. 2006;1:8.
- Congenital heart defects. March of Dimes. http://www.marchofdimes.com/professionals/14332_1212.asp. Accessed March 3, 2010.
- Craig B. Atrioventricular septal defect: From fetus to adult. Heart. 2006;92:1879.
- Warnes CA, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease. Journal of the American College of Cardiology. 2008;52:e143.
- Grogan M (expert opinion). Mayo Clinic, Rochester, Minn. March 10, 2010.
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