Resources for Care Centers

Single Ventricle Journey: A Guide for Parents and 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.

Please feel free to print off (internally with an inkjet or laser printer) and use/distribute the Single Ventricle Guide. If you or your care center would like to have the guide professionally printed and bound, please contact 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.

Single Ventricle Note to Practitioners/Centers

Single-Page View: Single Ventricle Journey: A Guide for Parents and Families

Spread View: Single Ventricle Journey: A Guide for Parents and Families

Parent's Guides to HLHS

Just under a year ago we formally launched our Patient and Family Support Learning Lab whose aim is to build a network of parents, clinicians, and researchers to improve HLHS patient and family support from diagnosis through the first year of life.  One of our first projects has been to develop Parents Guides to HLHS.  The purpose of these guides is to offer support, information and resources to families during their first year with HLHS.  They are in the format of a bulletin and have been designed to fit on a single page (front and back). 

Prenatal BulletinPostnatal BulletinInterstage BulletinPost Glenn BulletinTube Feeding BulletinRaising a Toddler Bulletin

NEW!  Preparing for Fontan Bulletin, Fontan Hospitalization Bulletin

We also have spanish versions of each availalable:

Prenatal Bulletin (Spanish), Postnatal Bulletin (Spanish), Interstage Bulletin (Spanish), Post Glen Bulletin (Spanish)

NPC-QIC participating members may click on the following links to access their automated reports, the internal SharePoint site, REDCap for data reporting purposes, or ASQ for neurodevelopmental screening.