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 those whose children have already gone through corrective surgery — can give you hope, encouragement and support. Ask your child's 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 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 time with your other children.
To help coordinate your child's care, you might prepare a brief note with your child's diagnosis, medications, surgeries and their dates, and the cardiologist's name and number. This note will provide necessary information to others who might 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 or your child's care. Some plans might not allow coverage for pre-existing conditions or might require a waiting period.
March 07, 2017
- What is tetralogy of Fallot? National Heart, Lung, and Blood Institute. http://www.nhlbi.nih.gov/health/health-topics/topics/tof. Accessed Aug. 4, 2015.
- Doyle T, et al. Pathophysiology, clinical features, and diagnosis of tetralogy of Fallot. http://www.uptodate.com/home. Accessed July 31, 2015.
- Doyle T, et al. Management and outcome of tetralogy of Fallot. http://www.uptodate.com/home. Accessed July 31, 2015.
- Facts about tetralogy of Fallot. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/heartdefects/TetralogyOfFallot.html. Accessed July 31, 2015.
- Tetralogy of Fallot. Merck Manual Professional Version. http://www.merckmanuals.com/professional/pediatrics/congenital-cardiovascular-anomalies/tetralogy-of-fallot. Accessed Aug. 4, 2015.
- Bonow RO, et al. Congenital heart disease. In: Braunwald's Heart Disease: A Textbook of Cardiovascular Medicine. 10th ed. Philadelphia, Pa.: Saunders Elsevier; 2015. http://www.clinicalkey.com. Accessed July 31, 2015.
- Warnes CA, et al. ACC/AHA 2008 guidelines for the management of adults with congenital heart disease: Executive summary. Circulation. 2008;118:2395.
- Tetralogy of Fallot. American Heart Association. http://www.heart.org/HEARTORG/Conditions/CongenitalHeartDefects/AboutCongenitalHeartDefects/Tetralogy-of-Fallot_UCM_307038_Article.jsp. Accessed July 31, 2015.
- Ferri FF. Tetralogy of Fallot. In: Ferri's Clinical Advisor 2016. Philadelphia, Pa.: Mosby Elsevier; 2016. https://www.clinicalkey.com. Accessed Aug. 4, 2015.
- Finding support. Centers for Disease Control and Prevention. http://www.cdc.gov/ncbddd/birthdefects/families-support.html. Accessed July 31, 2015.
- Getting support. American Heart Association. http://www.heart.org/HEARTORG/Caregiver/ReachOut/GettingSupport/Getting-Support_UCM_301847_Article.jsp. Accessed Aug. 4, 2015.
- Riggin ER. Allscripts EPSi. Mayo Clinic, Rochester, Minn. Aug. 4, 2015.
- Connolly HM (expert opinion). Mayo Clinic, Rochester, Minn. Sept. 9, 2015.