One of my SLP colleagues was kind enough to share these excellent resources for those of us who work with infants and children S/P surgery for Congenital Heart Disease. Very informative for my practice.
Pediatric patients with congenital heart defects have their own set of challenges such as heavy amounts of sedation, bypass, pain from surgical incision, and weakness from recovery. A good resource is the National Pediatric Cardiology Quality Improvement Collaborative Website. This group is studying a specific cardiac population HLHS (Hypoplastic Left Heart Syndrome) but there are some good resources. Another website to look for information in regards to neurodevelopment specifically with congenital heart patients is the Cardiac Neurodevelopmental Outcome Collaborative (CNOC) website. These two groups are looking at standard practices in regards to feeding and nutrition. Best practices sometimes come within your unit and your team. Find a physician champion, provide in-services to staff, develop protocols that promote safe and effective feeding practices for your patients. And try to get involved in small research studies or PDSA cycles, (Plan, Do, Study, Act) and share your experiences with other clinicians. Use the basics that you know about feeding safety but be creative with your feeding plans for families when feeding is so important to them.