Essential Resources for Parents on the Single Ventricle Journey
Navigating the challenges of congenital heart diseases, like Hypoplastic Left Heart Syndrome (HLHS), can be overwhelming for families. NPC-QIC offers a range of tools designed specifically to empower parents and caregivers from birth through the Fontan procedure and beyond. Here’s a closer look at some of the essential resources and what they offer:
Single Ventricle Journey: A Guide for Parents & Families
This comprehensive guide provides support, information, and resources tailored for families facing a single ventricle heart disease diagnosis. It was developed by both parents and clinicians to help families understand their child’s condition and navigate healthcare challenges effectively.
This document explains how NPC-QIC and its member care centers report data transparently and includes guidance on how to read and understand data presented in funnel plots.
This series of bulletins offers essential information and support for families at various stages of the HLHS journey. Topics range from prenatal to postnatal care, providing invaluable resources throughout their child's first year.
Oral Feeds Prior to Stage 1 Surgery Toolkit
While primarily a clinical tool, this resource helps parents understand how to support their infant's nutritional needs through preoperative oral feeding experiences, significantly impacting their child's well-being.
Co-developed by parents and clinicians, this toolkit provides practical education and expert guidance to assist families in the weaning process from feeding tubes, focusing on best practices for care.
The Interstage period occurs between an HLHS infant's Norwood and Glenn operations. It can be risky for HLHS infants. To improve care and outcomes during this crucial time, the NPC-QIC centers have collaborated with parent partners to develop the Interstage Change Package. This resource outlines strategies for clinicians, parents, and researchers to enhance quality improvement efforts during the Interstage period, ensuring that families receive the best support.
Optimizing Neurodevelopment & Supporting Infant Gross Motor Outcomes Toolkit
Though aimed at professionals, this toolkit includes strategies parents can implement to promote their child's developmental milestones and gross motor skills in hospital and home settings.
Psychological Aspects of Living with Congenital Heart Disease: Information for Patients and Families
Understanding the emotional journey is crucial for families dealing with congenital heart disease. This resource, created by authors of a scientific statement from the American Heart Association, offers insights and practical advice to help families cope with emotional and mental challenges. Access it here.
Conclusion
NPC-QIC can equip parents with valuable tools and resources that empower them throughout their child’s healthcare journey. By exploring these tools, families can navigate the complexities of congenital heart disease with greater confidence and hope. Please consult your child’s care team before implementing any guidance outlined in the toolkits and resources.
For more information and access to these invaluable resources, visit our Tools & Resources page or contact info@npcqic.org.