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Mended Little HeartGuide

Introduction Contents SECTION Confusion When your child was diagnosed with CHD, you may have received a huge amount of medical information that you didn’t fully understand. You might have turned to the internet to learn more, adding to your confusion and fear. Other parents of children with CHD might provide you with additional advice, which could be helpful, but could also add to your confusion because each person’s experience is different. HELPFUL TIPS FOR ELIMINATING CONFUSION Fortunately, you can take steps to better understand your child’s condition and eliminate confusion. Here are some ways to start: Ask questions. Don’t be afraid to keep asking doctors, nurses and other medical professionals questions until you truly understand what they are saying. When you think of a question, write it down so that you don’t forget to ask it during your next visit to your child’s doctor. This Mended Little HeartGuide has a printable form you can use to list your questions. Once you’ve asked, write down the answers so you can refer back to them as needed. Use reputable information. Visit ONLY reputable websites. Mended Little Hearts provides a listing of trustworthy websites at MendedLittleHearts.org under the heading “CHD Resources.” Use these online resources to educate yourself about your child’s condition. If you don’t have internet access, there are written materials that can help you learn more. You can order a book called It’s My Heart from The Children’s About My Child’s Heart Table of Heart Foundation or get a booklet called “If Your Child Has a Congenital Heart Defect” from your local affiliate of The American Heart Association. Your local children’s hospital is also likely to have printed information for you. Trust yourself. Learn to trust your intuition when making choices. You will often be able to tell when a decision is right for your family and when it is not by the way you feel. Many times, there are no “right” answers, so trust yourself to make the best decision you can with the information you have — but don’t go back and second guess yourself. Connect with others. Join a reputable support network that can help you find resources you may need to care for your child. If there is a Mended Little Hearts group near you, it can help connect you to resources in your area and to others who have been on a similar journey. While other parents and caregivers cannot answer your medical questions, they can give you tips on caring for your child in day-to-day life once you are home from the hospital. Go To 20


Mended Little HeartGuide
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