It can be extremely frightening to learn that your child has potentially life-threatening heart defects. Although support groups aren't for everyone, talking to other parents — especially ones who've already gone through the surgery — can give you hope, encouragement and people to lean on. Ask your doctor if there are any support groups for parents of children with heart defects in your area.
Be sure to give yourself a break at times. Ask other family members or friends to help you take care of your child. When your child is in the hospital, see if you can schedule friends and family to visit with your child so that you can go home to take a shower or nap, or to spend some time with your other children.
To help coordinate your child's care, you may wish to prepare a brief note with your child's diagnosis, medications, surgeries and their dates, and your cardiologist's name and number. This note will provide necessary information to others who may care for your child and will help any new doctor understand your child's health history.
If you change health insurance plans, be sure your new plan will cover your child's care, as some plans may not allow coverage for pre-existing conditions or may require a waiting period.
Feb. 23, 2012
- Tetralogy of Fallot. National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/tof. Accessed Nov. 2, 2011.
- Doyle T, et al. Overview of the management of tetralogy of Fallot. http://www.uptodate.com. Accessed Nov. 2, 2011.
- Bailliard F, et al. Tetralogy of Fallot. Orphanet Journal of Rare Diseases. 2009;4:2.
- Tetralogy of Fallot. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/heartdefects/TetralogyOfFallot.html. Accessed Nov. 2, 2011.
- Apitz C, et al. Tetralogy of Fallot. The Lancet. 2009;374:1462.
- Warnes CA, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease. 2008;118:714.
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