Hearts at Home
University Hospitals Rainbow Babies & Children’s Hospital’s Hearts at HOME (High-Risk Outpatient Monitoring and Education) Program provides specialized home care for infants born with a single ventricle heart defect – a condition where the heart has one functional ventricle or pumping chamber instead of two.
Infants born with a single ventricle heart condition require multiple surgeries early in life, redirecting blood flow to compensate for only having one good pumping chamber. These babies are at risk for complications in the first weeks to months of life, particularly during the time between the first and second heart surgeries, called the interstage period. With follow-up appointments and very close monitoring, children with a single ventricle heart defect can do well at home.
How the Program Works
UH Rainbow Babies & Children’s is the first pediatric heart program in Northern Ohio to provide parents of infants born with a rare heart defect a home monitoring system with FaceTime and 24/7 access to their pediatric cardiology team. We provide participating families with a specially configured iPad. Developed through UH Rainbow’s pediatric innovation program, the iPad allows parents to submit important data about their child’s health, including weight and oxygen level, to the UH Rainbow team in real time through a specialized app.
The Hearts at HOME app replaces the process of daily written charts and manual calculation, and decreases unnecessary visits to the emergency room. We also encourage participating parents to engage with the clinical team via secure video and photo-sharing capabilities like FaceTime.
Our Multidisciplinary Team
Hearts at HOME serves as part of a continuum of care from the hospital to outpatient clinic environment, enabling parents to carefully monitor their child in the comfort of home with the full support of the pediatric heart team at UH Rainbow Babies & Children’s. A patient’s dedicated multidisciplinary team of specialists works closely with your child’s pediatrician and any other specialty doctor that they see. This multidisciplinary care approach ensures that all aspects of a child’s medical care are linked and coordinated.
Benefits for You and Your Child
The goal of Hearts at HOME is to prevent life-threatening events, maximize babies’ growth and development, and provide families with education and support.
Families enrolled in Hearts at HOME benefit from:
- Comprehensive management from the medical and surgical teams that handle the most complex cases - from prenatal diagnosis through treatment and lifelong follow-up care
- Education to support all individuals involved in the care of your child with single ventricle heart disease
- Weekly multidisciplinary clinics that bring together the cardiac nurse, cardiac nurse practitioner, cardiologist, nutritionist, social worker, feeding therapist and neurodevelopmental experts to support your child's overall health
- Reduction in parental stress and anxiety through structured education and support
- Improved quality of life for your child, who can be monitored closely while at home rather than having to remain in the hospital
- Our team's participation in the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), a national network dedicated to improving quality of life and survival for infants with single ventricle heart defects
- Long-term follow-up following the second and third stage single ventricle palliation surgeries