Additional Resources for Families

The Heart Center at Primary Children's Hospital - According to the, Primary's Children's is ranked among the top Pediatric Cardiology and Heart Surgery programs in the United States, with surgical results higher than the national average. 

Primary Children's Surgical Outcomes Data:   STS is the Society of Thoracic Surgeons, RACHS score on page 2, indicates the severity/complexity of cases. The higher the score the more complex the cases. As you can see from the circled numbers, in complex heart disease they are doing even better with mortality less than half compared to average.

Camp Hawkins - Camp Hawkins is a summer camp for children ages 7-17 with heart disease and their siblings. Volunteers, including an on-site medical staff, provide a fun, safe experience tailored to each child's needs and abilities. It is held at Camp Wapiti in Tooele, UT, the same location as IHH Family Heart Camp. They also have a Day Camp for kids ages 5 and 6.

Kids Wish Network - Kids Wish Network grants wishes for children who are between the ages of 3 and 18 and have a life-threatening illness. Anyone can refer a child, including a family member, friend, nurse, doctor, or social worker. In addition, the organization's "Hero of the Month" program was developed to honor children also between the ages of 3 and 18 who have overcome life-altering circumstances and have stayed in or been treated at one of our Hero pediatric care facilities.

The Pocket Physician - A phone app developed by one of our very own Heart Mom's. This is a great app to help you track medications, medical equipment, vital statistics, nutrition and feeding, medical events, and so much more!  

Utah's Yellow Dot Program - Providing important medical information in case you are in a car accident and are unable to communicate. 

Utah Parent Center - The Utah Parent Center is a private, nonprofit organization dedicated to helping parents help their children with disabilities to live included, productive lives as members of their communities.   They are available to help with IEP's and answer other questions.

Understanding Social Security benefits when your child is diagnosed with a CHD

Congenital Heart Defects in the Classroom Brochure: Trainees of the Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND) program have created a brochure to provide teachers with knowledge of congenital heart disease (CHD) and associated behavioral, academic, and developmental needs of children with the condition. We hope this brochure enhances parent-to-school communication. Parents, feel free to use this resource by filling it out and sharing it with your child's teacher. We have also linked a survey to better understand the accessibility of this tool.