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Interstage Home Monitoring After Newborn First-Stage Palliation for Hypoplastic Left Heart Syndrome: Family Education
Jo Ann Nieves1,2,3,4,5,6, Karen Uzark7,8,9,10,11,12, Nancy A Rudd7,8,9,10,11,12
1Jo Ann Nieves is a pediatric nurse practitioner in the neonatal high-risk cardiac surgery clinic and the adult congenital heart disease program at the Nicklaus Children's Hospital Heart Program, Miami, Florida. artnieves1@aol.com.
Insights
Families of infants with hypoplastic left heart syndrome (HLHS) need comprehensive training for critical home care. This ensures infant survival and optimal growth during the fragile interstage period between surgeries.
Area of Science:
- Pediatric Cardiology
- Neonatal Nursing
- Congenital Heart Disease
Background:
- Infants with hypoplastic left heart syndrome (HLHS) face significant risks during the interstage period.
- Single-ventricle physiology presents complex and potentially unstable circulatory challenges.
Purpose of the Study:
- To provide detailed nursing guidelines for educating families on home care for infants with HLHS.
- To emphasize the importance of family training in home surveillance and early recognition of complications.
Main Methods:
- Focus on comprehensive family training starting from intensive care unit admission.
- Guidelines cover home surveillance monitoring: oxygen saturation, enteral intake, weight, and "red flag" symptom recognition.
Main Results:
- Multicenter initiatives have improved outcomes, growth, and survival during the interstage period.
- Effective family training is crucial for managing medically fragile infants at home.
Conclusions:
- Nurses play a vital role in preparing families for interstage home care.
- Optimizing interstage outcomes requires robust family education and home monitoring protocols for HLHS infants.
Abstract:
Children born with hypoplastic left heart syndrome are at high risk for serious morbidity, growth failure, and mortality during the interstage period, which is the time from discharge home after first-stage hypoplastic left heart syndrome palliation until the second-stage surgical intervention. The single-ventricle circulatory physiology is complex, fragile, and potentially unstable. Multicenter initiatives have been successfully implemented to improve outcomes and optimize growth and survival during the interstage period. A crucial focus of care is the comprehensive family training in the use of home surveillance monitoring of oxygen saturation, enteral intake, weight, and the early recognition of "red flag" symptoms indicating potential cardiopulmonary or nutritional decompensation. Beginning with admission to the intensive care unit of the newborn with hypoplastic left heart syndrome, nurses provide critical care and education to prepare the family for interstage home care. This article presents detailed nursing guidelines for educating families on the home care of their medically fragile infant with single-ventricle circulation.