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Coping and support
By Mayo Clinic staffCaring for a baby with a serious heart problem, such as hypoplastic left heart syndrome, can be 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. It will be important to write down your baby's diagnosis, medications, surgery and other procedures and the dates they were performed, as well as the name and phone number of your child's cardiologist, emergency contact numbers for your child's doctors and hospital, and any other important information about your baby's care. It's also important 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 complex health history.
- Talk about your concerns. As your child grows, you may worry about activities in which he or she can safely participate. 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, productive lives.
References
- Fraser CD, et al. Congenital heart disease. In: Townsend CM, et al. Sabiston Textbook of Surgery. 18th ed. Philadelphia, Pa.: Saunders Elsevier; 2007. http://www.mdconsult.com/das/book/body/186905321-10/962096861/1565/579.html#4-u1.0-B978-1-4160-3675-3..50064-2--cesec58_3551. Accessed March 3, 2010.
- Bernstein D. Cyanotic congenital heart disease: Lesions associated with increased pulmonary blood flow. In: Kliegman RM, et al. Nelson Textbook of Pediatrics. 18th ed. Saunders Elsevier; 2007. http://www.mdconsult.com/das/book/body/186905321-10/962096861/1608/1010.html#4-u1.0-B978-1-4160-2450-7..50433-3--cesec35_8312. Accessed March 3, 2010.
- Fontan procedure-requiring lesions. In: Libby P, et al., eds. 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--cesec370&displayedEid=4-u1.0-B978-1-4160-4106-1..50064-9--cesec382&uniq=186905321&isbn=978-1-4160-4106-1&sid=962096861#lpState=open&lpTab=contentsTab&content=4-u1.0-B978-1-4160-4106-1..50064-9--cesec381%3Bfrom%3Dtoc%3Btype%3DbookPage%3Bisbn%3D978-1-4160-4106-1. Accessed March 3, 2010.
- Hypoplastic left heart syndrome. American Heart Association. http://www.americanheart.org/presenter.jhtml?identifier=1353. Accessed March 3, 2010.
- Grossfield P, et al. Hypoplastic left heart syndrome: New genetic insights. Journal of the American College of Cardiology. 2009;53:1072.
- If your child has a congenital heart defect - Our guide for parents. American Heart Association. http://www.americanheart.org/presenter.jhtml?identifier=3007586. Accessed March 3, 2010.
- Waltzman M. Initial evaluation of shock in children. http://www.uptodate.com/home/index.html. Accessed March 3, 2010.
- Gordon BM, et al. Decreasing number of deaths of infants with hypoplastic left heart syndrome. The Journal of Pediatrics. 2008;153:354.
- Grogan M (expert opinion). Mayo Clinic, Rochester, Minn. March 16, 2010.
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