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Mended Little HeartGuide

About My Child’s Heart Table of Introduction Contents SECTION Congenital Heart Disease: A Lifelong Journey The good news is that most children born with CHD will survive into adulthood. In fact, today there are more adults than children living with CHD. However, people living with CHD will require specialized care throughout their lives. Living with CHD is a lifelong journey, but it can be a happy and healthy one with appropriate care. Often, parents believe (and some are even told) that their child is “fixed” after their surgery or heart PLAY VIDEO procedure. While your child may appear normal and Congenital Heart Disease: may have absolutely no restrictions, he or she still needs A Lifelong Journey specialized lifelong care. Even people who who have technically minor congenital heart defects that were repaired during childhood should visit a cardiologist who specializes in CHD at least once as an adult. Children with more complex defects should receive regular cardiac care throughout their lives, even if everything seems fine. CHD patients who don’t receive regular treatment could end up in an emergency situation that could have been avoided with regular care. Always follow your child’s cardiologist’s recommendations for check-ups. The American College of Cardiology and the American Heart Association have published a guide, “Management of Adults With Congenital Heart Disease,” on this topic. Empowering Your Child to Become a Healthy Adult A big fear of many parents and caregivers is that their child with CHD will not take proper care of themselves and their heart during adulthood. There are some things you can do to facilitate the transition from pediatric to adult CHD care: Talk to your child, in age-appropriate ways, about his or her heart defect. Don’t hide information. As soon as your son or daughter is old enough, discuss and provide information about his or her heart defect. Share the name of the defect. Some CHD names are tough, even for adults, but helping your child learn about their CHD will help with proper lifelong care. There is some helpful information written for Teens with CHD on the Pediatric Heart Network Web site. Help your child learn which medications he or she takes and why. Sometimes, when children with CHD are on their own, they stop taking some medications because they don’t like the side effects or don’t want to pay the high price to get refills. If your son or daughter understands the reason for each medication, he or she is more likely to keep taking it as an adult. Involve your child in medical care. Encourage your child from an early age to ask the cardiologist and other doctors questions. This will help him or her feel more empowered and in control, and that feeling will continue into adulthood. Get your child in the practice of writing down questions before appointments. By the age of eight, your child should be able to answer some of the doctor’s questions. Parents and caregivers often answer out of habit, but Go To 74


Mended Little HeartGuide
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