Interstage Home Monitoring After Newborn First-Stage Palliation for Hypoplastic Left Heart Syndrome: Family Education Strategies

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.

Needs for Post-hospital Education among Parents of Infants and Toddlers with Congenital Heart Disease

“…Therefore, to promote the growth and development of children with CHD, it will be important to provide parents with education on appropriate weight gain and the importance of feeding and nutritional intake. Specific guidelines [9,16] on feeding methods for infants with CHD should also be provided. A high level of need was also reported for education on the physical activity of infants and toddlers.…”

“…As a result, most children with CHD experience their first therapeutic intervention in the postpartum period (defined as 6 to 8 weeks after delivery), which is a time when parents tend to focus on their children's survival [8]. Parents then face a situation where they must continue to manage their children's disease after discharge from the hospital [9], because infants and toddlers with CHD continue to experience difficulties in activities ranging from feeding to sleeping due to symptoms of dyspnea, hypoxia, and heart failure that remain after initial treatment [9][10][11][12]. Therefore, parents may experience psychological distress due to their unfamiliarity with managing their children's disease and their children's uncertain prospects [8,[10][11][12], which might lead to a dysfunctional parenting style that interferes with their children's healthy growth and development [4].…”

New Aspects in the Diagnosis and Therapy of Fetal Hypoplastic Left Heart Syndrome

“…HSM models are multidisciplinary programs which provide focused parental education before patients are discharged home after palliation. HSM programs include home weight checks, oxygen saturation monitoring and educating parents to recognize specific symptoms indicating potential cardiopulmonary or nutritional decompensation 124 . Ghanayem and colleagues reported that interstage mortality dropped from 15.8 to 0% in 24 HLHS patients after an HSM model was implemented 125 .…”

Caregiving for Interstage Infants: A Continuous Process of Compromise During the Pandemic

“… 1 The development and implementation of home monitoring programs have improved survival up to 80% to 90% during the interstage period. 1 – 3 Home monitoring includes interdisciplinary care coordination and educating parents as home caregivers. Caregivers are trained to use a pulse oximeter and weight scale and are asked to record respective parameters along with feeding volumes each day, target parameters, and “red flags” that reflect a change in the infant's clinical condition that should prompt caregivers to seek immediate medical attention.…”