Patient & Family
Resources & Support
Please consult with your or your child’s clinical care team for guidance before using the tools and resources below:
FIRST YEAR OF LIFE TOOLKITS
Co-developed by parents and clinicians, the First Year of Life project toolkits are concise and practical resources that provide education and expert guidance to support infants with single ventricle heart disease reach critical milestones and during the first year of their journey. Each toolkit has a specific focus area such as oral feeding, neurodevelopment, gross motor development, tube weaning, and interstage outcomes. Most of the toolkits are designed for use by care center teams within clinical settings and families at home, with the exception of the Unplanned Reinterventions Toolkit which is reserved for SV-ONE member use.
SINGLE VENTRICLE JOURNEY: A GUIDE FOR PARENTS & FAMILIES
Co-developed by parents and clinicians, the purpose of the Guide is to offer support, information, and resources to families from birth to Fontan and beyond with HLHS.
If you or your care center would like to have the guide professionally printed and bound, please contact us and we will provide the proper high-resolution, press-ready pdf files with crop marks and bleeds for you to give to your print vendor.
PARENT’S GUIDES TO HLHS
Our Family Cares developed the Parent's Guides to offer support, information and resources to families during their first year with an HLHS diagnosis. They have been co-developed by parents and clinicians and are in the format of bulletins.
PSYCHOLOGICAL ASPECTS OF LIVING WITH CONGENITAL HEART DISEASE: INFORMATION FOR PATIENTS AND FAMILIES
The authors of a scientific statement from the American Heart Association entitled "Psychological Outcomes and Interventions for Individuals with Congenital Heart Disease: A Scientific Statement from the American Heart Association" have created a companion resource specifically for patients and families.
HEART UNIVERSITY WEBINARS
NPC-QIC and the Fontan Outcomes Network (FON) were invited by Heart University to co-sponsor a yearlong webinar series for global learning and engagement to improve the care of patients with single ventricle physiology. Hosted by Heart University, the “Global Single Ventricle Learning Series” is a six-webinar collaboration between parents, physicians, and various Care Center team members taking place August 2020 through June 2021.
Video recordings of the presentations are published at the page linked below.
ACTIVE LIVING WITH FONTAN CIRCULATION: PRE-K TO GRADE SCHOOL TOOLS
The Active Living with Fontan Circulation Toolkit is a set of guides for patients and families that emphasizes the importance of physical activity for children with Fontan Circulation.
ACTIVE LIVING WITH FONTAN CIRCULATION: ADOLESCENT & ADULT TOOLS
The Active Living with Fontan Circulation Toolkit is a set of guides for patients and families that emphasizes the importance of physical activity for adolescents, teens, and adults with Fontan Circulation.
PARENT’S GUIDE TO TRANSPARENCY
Learn how SV-ONE reports care center data transparently by using Funnel Plots. Here is a tip sheet created by the Transparency Learning Lab for Clinicians and Families to understand how to use this data report.
More Tools and Resources
Care Center & Clinical Tools & Resources
Research Explained
Questions to Ask When Selecting A Pediatrician
Suggested Organizations