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Mended Little HeartGuide

Ask questions such as: Diagnosis 3 In The • How often have you performed this procedure for this condition? • What is your survival rate? • What is the average recovery time at this hospital? • What complications are likely to occur? • How does the care team work together, and how well do they handle patients with this condition? • Do you have a care unit dedicated to pediatric heart patients? • What is the mortality rate at this hospital for CHD? (Note: Mortality rate may not be a good indicator because some hospitals take many higher-risk patients and may, therefore, have higher mortality rates.) • What resources are available for families at this hospital? U.S. News & World Report ranks children’s hospitals, and those rankings are also worth reviewing as you make your selection. You need to feel comfortable with the hospital and surgeon you decide on and should feel empowered to choose the best option for your child. Don’t be afraid to get a second opinion. Many parents and caregivers feel that their doctor will be offended or that getting a second opinion means that they don’t like their doctor. That is not the case. CHD is complex, and second opinions can be helpful. In many cases, the second opinion simply confirms that the first doctor and hospital are the right choice, but it could also reveal new information that will help you get the best care for your child. You may have to travel. Not every city has a hospital that performs surgery on children with CHD, so you may need to travel. You may also decide that a hospital in another city will provide better care for your child than your local hospital. If you do decide to travel to another area, consult with your insurance company prior to making arrangements to ensure that services will be covered. Resources such as Ronald McDonald Houses are available for families who need to travel for medical procedures. Learn about these resources to help you decide if traveling is a feasible option for your family. (More information is available in the Financial Considerations During the Hospital Stay section of this Mended Little HeartGuide.) There are Mended Little Hearts groups in many areas that may be able to guide you to information for families from out of town. If you do decide to travel, get a realistic estimate of how long you will be away from home — understanding that no one can predict this with 100 percent certainty because children’s recovery rates vary. Use caution when comparing experiences. Parents often ask other parents about their experiences with a particular hospital, surgeon or doctor. While this can be helpful, it’s important to remember that everyone’s experience is unique. For a variety of reasons, including the severity and complexity of the child’s CHD and even personality, two families can have vastly different experiences with the same hospital, surgeon or doctor. Parents who have a good experience tend to promote that facility. The best policy is to do additional research and investigation into recommendations you get from other families, blogs and social media. 1 General Information 2 Prenatal Hospital 4 Living With CHD 5 Forms 23


Mended Little HeartGuide
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