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Mended Little HeartGuide

Introduction Contents SECTION • Take pictures of all medications or keep a record with you. Get refills before traveling so you don’t run out. • If your child needs special foods or formula, be sure to bring it with you on the plane. • Make a list of doctors at your destination who could treat your child, if needed. Keep this list handy. Ask your child’s cardiologist for recommendations if you can’t find the information yourself. Again, it is always best to talk to your doctor before air travel to make sure your child is okay to travel via plane. If your child has both lung disease and heart disease, you should speak with both your cardiology and pulmonary teams. Can my child play football or other contact sports? Many parents of children diagnosed with a critical CHD are told that their child will never play contact sports or be a marathon runner. Parents have different reactions to this based on their hopes and dreams for their child. The fact is that some kids with CHD can play football and run marathons. One young man with CHD biked all the way across the nation. Other kids with CHD cannot do these things because their heart disease creates more limitations on what they can do. Kids with arrhythmias, for example, may have more medical restrictions than kids without them. Also, kids on blood thinners may be at greater risk for bleeding. Sometimes, children with CHD can play a sport like football when they are young (before it gets too competitive) but will not be able to keep up with their peers as they get older. Some kids will try a sport, like soccer, and find that they get out of breath too easily to enjoy the game. Each child is different. The first step is to talk to your child’s doctors to find out what his or her true limitations are and, more About My Child’s Heart Table of importantly, what he or she is able to do. If your child is old enough, let your child ask the doctor directly. Some activities, like martial arts, might seem off limits but can be done in the right environment with the right precautions. When your child shows an interest in a sport you know they cannot play, you may feel sad, guilty or angry, but try to think in terms of what your child CAN do. If he or she loves football and baseball, focus more on baseball. Don’t set limits because of your fears; only limit your child if a doctor has set restrictions. Many kids with CHD are able to play sports and stay active, and we need to let them be kids. Can we live at high altitudes? Many parents who have children with complex CHD are concerned about visiting or living in a place at high altitude. While babies with complex CHD in Denver do have lower blood oxygen saturations than babies living at sea level, that does not mean that those families can’t live in Colorado. Ask your child’s cardiologist about the considerations involved in living at higher altitudes. Can my child ride rollercoasters and other thrill rides? This topic causes a lot of controversy. Unfortunately, there is no clear answer. It is something to discuss with your child’s cardiologist. On one hand, parents and caregivers want kids to be kids and to have fun. On the other hand, we don’t want our kids taking potentially life-threatening risks. Many thrill rides have signs warning people not to ride if they have a heart condition because there is a risk involved for heart patients, and that risk includes the possibility of death. Some kids with heart conditions have died on thrill rides. Most parents of children with CHD want their son or daughter to have a “normal” life with “normal experiences,” but some risks may be too high. That is a decision to make with your child’s doctors. Go To 82


Mended Little HeartGuide
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