Parent and Family Resources

New!  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 Parent's Guides to HLHS.  The purpose of these guides is to offer support, information and resources to families during their first year with HLHS.  They have been co-develped by parents and clinicians and are in the format of a bulletin. 

Prenatal Bulletin pdfPostnatal Bulletin pdfInterstage Bulletin pdfPost Glenn Bulletin pdf

We hope you find these helpful.  Please let us know if you have an feedback via


NPC-QIC is proud to partner with Sisters By Heart (SBH) whose mission is to provide support, education, and empowerment to families affected by Hypoplastic Left Heart Syndrome.  This partnership has been vital for NPC-QIC and has catalyzed our efforts to co-produce health the HLHS community.  In addition to the resources below, please do peruse the resources page on the SBH website.