Page 22

Mended Little HeartGuide

Table of Introduction Contents SECTION Empowering Parents to Make Health Care Choices Mended Little Hearts believes that parents and caregivers of children with CHD should have the right information to empower them to make the best possible choices when it comes to their child’s care and treatment. Mended Little Hearts encourages transparency, information sharing and the education of parents and caregivers. Here are some tips for empowering yourself when making health care decisions for your child with CHD: Educate yourself via reliable sources. To make good decisions about care, you need to understand your child’s condition. Being exposed to a whole new world of medical terminology and information can be confusing and overwhelming, but taking the time to learn about your child’s CHD will help you throughout your son or daughter’s life. There are many reliable sources of information. A few that MLH members recommend include pted.org (which features moving diagrams), the Children’s Heart Foundation book It’s My Heart (available in both paperback and e-book), the Centers for Disease Control and Prevention website, the American College of Cardiology’s CardioSmart site, the American Heart Association’s booklet “If Your Child Has a Congenital Heart Defect” (available online and in print from many local affiliates) and SCAI’s Seconds Count website. Your local children’s hospital can also offer information on your child’s condition. Please be aware that some other websites may not only be unreliable but also needlessly alarming for new CHD parents. About My Child’s Heart Work with your child’s doctor. Ask your child’s doctor to draw a picture of your child’s heart and very clearly explain the condition. Don’t be afraid to keep asking questions until you truly understand. No question is a stupid question. Health care providers would rather you understand your child’s CHD than leave with unanswered questions. If you think of questions while you are away from your child’s medical team, write them down so that you’ll remember to get answers later. This Mended Little HeartGuide has a printable form you can use to list your questions as well as forms where you can record information about your child’s heart defect and the surgeries or procedures he or she will need. (About My Child’s Heart). Learn about your hospital. Unless your child needs emergency surgery immediately after being diagnosed with CHD, you have time to learn about your hospital and surgeon and to make choices about care. It is your right to choose the hospital and surgeon that you feel is best for your child. Do not be afraid to ask questions to make sure your son or daughter is getting the best care possible for his or her condition. Go To 22


Mended Little HeartGuide
To see the actual publication please follow the link above