Improving Child-Specific Development while Waiting for a New Heart

Objectives: Ventricular Assist Device (VAD) therapy for congenital heart disease (CHD) offers new aspects to heart failure regimens and represents a method as bridge to organ transplantation. Failure to thrive (FTT), feeding intolerance and growth retardation are common issues on VAD therapy. Reasons can be social and motoric deprivation due to hospitalization. During long-term support technical challenges on the ward pose additional hurdles. Therefore, we implemented a standardized protocol for this patient group at our institution to improve somatomotoric and psychosocial development, quality of life, and equipment safety.

Methods: Between 2005 and 2016, a total of 80 patients (male: n = 43 (53.75%), female: n = 37 (46.25%) on VAD therapy aged ≤ 18 years at time of implantation were reviewed. Patients who were supported more than 14 days were included. Demographic data at time of VAD implantation were collected. Weight and height at time of VAD implantation and last available follow-up due to transplantation, weaning or death were recorded and converted to z-scores. A standardized program was implemented to prospectively analyze improvement in child development. This included family-oriented daily physical and ergo therapy, introduction of a well-balanced nutrition and allocation of a well-equipped playing room. Check-up of VAD systems was routinely performed 4 times daily.

Results: 60 LVAD (49 Berlin Heart, 11 HeartWare), and 20 BVAD (Berlin Heart) were implanted. Median age at implantation was 2.75 years (0.03–17.95 years). Diagnosis at time of implantation included cardiomyopathy (n = 60), CHD (n = 14), and myocarditis (n = 6). Overall mean support time was 137 ± 174 days (15–882 d; median 63 d). At time of VAD implantation 36.25% were defined as FTT. The mean weight at time of implantation was 21.86 kg (3.6–87 kg; median 12 kg). The mean weight at explantation or last clinical visit was 22.81 kg (4.4–97 kg; median 13 kg).

Conclusion: Children necessitating VAD support have impaired somatic and neurodevelopmental growth, with over a third defined as FTT. We aim to prove that a multidisciplinary approach to create a safe environment while on VAD support can help to improve somatic and neurological development during long-term mechanical circulatory support.