Resources for Care Centers

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). 

There are two versions available: PDF versions can be printed and handed to families as they are, alternatively care centers can download the Word versions and customize to include local resources and/or appropriate branding. 

Prenatal Bulletin pdfPostnatal Bulletin pdfInterstage Bulletin pdfPost Glenn Bulletin pdf

Prenatal Bulletin wordPostnatal Bulletin wordInterstage Bulletin wordPost Glenn Bulletin word

NEW!  Tube FeedingRaising a Toddler

We also have spanish versions of each availalable:

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

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