NPC-QIC Partner Spotlight: How Sisters by Heart Connects and Empowers Those Affected by Single Ventricle Heart Disease
The National Pediatric Cardiology Quality Improvement Collaborative is proud to partner with organizations that support single ventricle patients and families. Sisters by Heart is a unique non-profit (501c3) organization whose mission is to provide support, education, and empowerment to individuals affected by single ventricle heart disease (SVHD) and their families from the time of initial diagnosis throughout their journey. Sisters by Heart, which started over 12 years ago, is run by an all-volunteer team of parents and individuals affected by SVHD.
“Each of our board members tirelessly volunteers so much of their time to the Sisters by Heart organization because we all know firsthand how powerful and transformative it is making connections, having support in this journey, and knowing you are not alone,” said Sisters by Heart President Lacie Patterson.
The cape and mask included in Sisters by Heart’s Super Fontan care package makes little ones feel like a Fontan Hero.
Understanding the difficulties and challenges that patients and parents face following an SVHD diagnosis, Sisters by Heart volunteers empower families with resources, education, and a support system as they begin their treatment journeys and continue care throughout adulthood.
Sisters by Heart is the only support organization specific to these rare diseases and has made a lasting impact on the SVHD community through its care packages, connections, and collaborations.
Care Packages
The care packages feature items handpicked by parents of SVHD patients based on their lived experiences to make hospital stays and recovery more comfortable.
A Fontan-themed coloring book helps young patients relate to their upcoming surgery.
Sisters by Heart has provided over 4,100 complimentary care packages to help support and prepare individuals and their families for open heart surgery. Currently, they provide two separate care packages to families, one at the time of initial diagnosis, called the Newly Diagnosed package, and another called the Super Fontan package, delivered near the time of the Fontan operation.
These personalized care packages can be requested by SVHD families directly or by nominating a family on the Sisters by Heart website.
Connections
Sisters by Heart fosters community and powerful connections for SVHD families through various platforms. Linked by Heart helps families find support and encouragement in regional connections through private Facebook groups.
Linking Hearts is a one-to-one, algorithm-based matching system that connects members based on similar interests and characteristics.
Over 2,000 connections between SVHD individuals and families across the country have been made through both platforms.
Linked by Heart uses private Facebook groups for each region of the U.S. to connect single ventricle families.
Collaborations
Sisters by Heart also leverages partnerships to expand its impact. Learning healthcare collaboratives, healthcare providers, members of the scientific community, and community support organizations lend their voices and expertise to develop education materials and advocate care.
Through these partnerships, Sisters by Heart has created over 20 web-based educational series, co-produced eight medical resources, and shared over 24 Research Explained papers.
The range of resources offers the patients’ and parents’ perspectives on facing a single ventricle diagnosis, answers common questions, and helps parents prepare for each stage of their child’s treatment journey. Furthermore, families preparing for Fontan surgery or entering the post-Fontan phase can access timely, relevant resources.
These resources, guides, toolkits, and educational series are available on the Sisters by Heart website.
How You Can Help
Interested in advancing the mission of Sisters by Heart? NPC-QIC encourages you to get involved in the following ways:
Explore the Sisters by Heart website and share the resources available with single ventricle families at your care center or with your network.
Nominate a single ventricle family to receive a care package.
Learn more about donating items or making a charitable contribution to support the creation of care packages for SVHD families by reaching out to info@sistersbyheart.com.
Connect with Sisters by Heart on social media.
Scan the QR code to visit the Sisters by Heart website on your mobile device.