Improving Interstage Growth in Single Ventricle Heart Defects

1. Improving Interstage Growth in Single Ventricle Heart Defects Kristi Fogg MS, RD, LD, CNSC Pediatric Cardiology Dietitian Sodexo/MUSC Children’s Hospital

2. Objectives • Understand factors contributing to growth failure in infants with Hypoplastic Left Heart Syndrome (HLHS) • Discuss the National Pediatric Cardiology Quality Improvement Collaboration (NPC QIC) • Identifying the role of the dietitian as a member of the care team • Review the components of MUSC’s Interstage Growth Monitoring Pilot Program • Show the role of technology in improving communication with parents and care teams

3. Anatomy of the Single Ventricle Heart

4. Surgical Pathway • Week 1-2 of life • Norwood Procedure • Hybrid, central shunt • 6-10 months • BiDirectional Glenn • 3-4 years old • Fontan

5. Growth Failure in HLHS • Poor prenatal growth (IUGR) • Inability to feed preoperatively • Slow progression of feedings post op • Poor intestinal perfusion, NEC • Reflux • Oral Aversion • Fluid Restriction • Chromosomal abnormalities • Trisomy 21, 18; Turners syndrome, Digeorge Syndrome • Other non cardiac malformations • Cleft lip/palate, imporforate anus, gut malrotation

6. National Pediatric Cardiology Quality Improvement Collaboration • NPC-QIC • Mission • Improve care and outcomes of infants with HLHS during the 4-6 month outpatient interstage period between surgeries • Improving interstage growth • Reducing readmissions due to major adverse events • Improving communication and care coordination with the family, referring cardiologists, and primary care clinic • Includes 42 pediatric cardiology centers • Physicians, CT Surgery, NP’s, Dietitians, Speech Therapists • Parental Involvement

7. NPC QIC Involvement • Learning Sessions (2x Year) • Monthly Action Calls (MUSC presenting on 4 calls) • Working calls focused on Growth, Care transitions, discharge planning and emerging literature • PDSA Presentations • Story Boards • Data Entry and Data Sharing • Access to shared drive

8. Learning session: June 2012 • Focus on Growth Failure • Current growth trends between institutions • Implementation of feeding protocols • Engaging your RD • Major red flag events • Growth bundles • Care transitions

9. Dietitian Involvement • Goal: Dedicated Dietitian to Pediatric Cardiology Department to improve growth and reduce mortality • Updated nutrition care plan • Coordination of care w/ outlying facilities and families • Phone availability when not physically present • 93% Patients had dietitian available inpatient • 69% had dietitian available as an OP • 12% routine with clinic visit • 57 % consulted as needed

10. Current Successful Interventions

11. MUSC QI in INTERSTAGE GROWTH

12. Introduction of growth bundle • Established Feeding Protocol • After Hours TPN • Establishing Interdisciplinary team • Addition of pharmacist and dietitan • Participation in rounding, care coordination, QI • Non statistical significant improvement

13. LactoEngineering • Hindmilk • 5 minute separation of foremilk • Evaluation of composite milk and hindmilk • Ranging 25-33 cal/oz • Eliminates need for fortification • Skim Breastmilk • For patients with chylous effusions • Requires supplementation with MCT based formula, ADEK MVI

14. InterstageMonitoring • In the interstage, this is an extremely vulnerable time with a significant incidence of growth impairment, re-hospitilization, myocardial dysfunction and death • Implement an interstage growth surveillance program that performs outpatient growth, feeding, and nutrition monitoring between Norwood and Glenn surgery. • Develop and promote an interprofessional collaboration to reduce interstage growth failure

15. Interstage Monitoring Program • IP Grant ($15,000) • Fosters an environment that rewards innovative and integrated education, research and patient care. • Scales, Pulse ox monitors, educational binders, Learning sessions for NPC, Peapod maintenance • Why is MUSC unique? • NO ONE is excluded • Technology • Interaction with outlying facilities • Funding

16. Inclusion Criteria • Neonates requiring surgical shunt placement, PA banding, Norwood procedure, or hybrid procedure for single ventricle anatomy • Once transferred to the stepdown unit, parents are consented and education is initiated

17. Discharge Teaching Started • Discharge Educational Binder • Use of Pulse Ox, Infant Scale • Formula Preparation • Red Flag Action Plan • Use of Google Voice Correspondence • Peapod Measurement

18. Peapod Measurement • Body Mass Measurement • Measured oxygen consumption, CO2 expelled, BSA • Infants and Body Mass • Long term correlation with chronic disease • Possible use in anesthesia • Leaner babies have higher BMR • Correlation in Cardiac Babies?

19. Peapod measurement

20. Weight Monitoring and Sat Monitoring • Decrease interstage mortality • Earlier feeding interventions • Triaging red flag action plans • Improved detection of important residual/recurrent lesions and improved survival • Avoiding unnecessary ER visits • Earlier operative intervention

21. Red Action Plan

23. Use of Technology • Parents communicate daily using google voice • Text/Call to adjust feedings or address red action plan • Data entered into shared drive • Weekly Rounding • BiMonthly progress report to pediatrician and cardiologist

24. Google Voice for Parental Communication • Free! • Need Google account • Assigned local number • Texting/Voicemail • Voicemail Transcription • Able to re-route to multiple phones • Allow on call schedule

25. Google Voice

27. Thank you! Questions????