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The High Risk Infant (HRI) and Single Ventricle Interstage Monitoring Program at St. Louis Children’s Hospital - Washington University aims to provide high-quality and comprehensive care for our patients and families. We will work with you to provide support and resources for you and your family before birth, during hospitalization and after discharge. Our goal is to provide guidance for families to successfully care for their infant at home during this stressful and fragile time.
Infants who fall into the “high risk infant” category include those with single ventricle congenital heart disease such as hypoplastic left heart syndrome, tricuspid atresia, or pulmonary atresia, etc. This may also include patients who are dependent on a shunt for pulmonary or systemic blood flow (e.g. BT shunt, Sano shunt, or PDA stent) such as those with tetralogy of Fallot or double outlet right ventricle.
The interstage period is the time between stages I and II of palliative or complete repair. These infants require frequent follow-up early in life and often need additional support. Close follow up with our team and utilization of our home monitoring program has been shown to improve nutrition and growth, neurodevelopment, and overall survival infant survival.
Meet the Team
Our High Risk Infant (HRI) team is composed of two pediatric cardiologists, a pediatric nurse practitioner and two certified nurses. During your clinic appointment your child will be seen by a multidisciplinary team which also includes a feeding specialist, dietician , physical therapist, occupational therapist, and social worker. We all work together to provide optimal care and quality of life, as well as facilitate smooth transitions between the hospital and home when necessary.
What Does Our Program Offer?
- High-quality, comprehensive care for high risk and single ventricle patients by providing families with a standardized approach to care
- A multi-disciplinary team including: Pediatric cardiologists, an advanced practice provider, registered nurses, a social worker, speech, physical and occupational therapist, and nutritionist
- Inpatient rounding and specialized discharge planning, including take-home education and equipment, and caregiver training
- Close outpatient monitoring. We are the only hospital in Missouri to offer bi-weekly check-ins with use of LOCUS for home monitoring of oxygen saturations, feeds, weight and “red flags”
- Collaboration with families local or referring cardiologists and pediatricians
- Coordinated outpatient care for the patient and family
- 24/7 availability for phone consultations or emergency assistance
- Outpatient Feeding Clinic with dedicated speech therapist and dietitian and tube weaning program
- Follow-up in our Cardiac Neurodevelopmental Program
- Long term care with our outpatient Fontan Clinic
- Support services and resources on and off site
Why Choose Us?
St. Louis Children’s Hospital is consistently ranked among the nation’s best pediatric hospitals by U.S. News & World Report, the most comprehensive source of quality-related information on U.S. pediatric hospitals. We follow one simple mission – to do what’s right for kids. That mission comes to life through medical discovery, innovative therapies and compassionate care.
St. Louis Children's Hospital is part of the National Pediatric Cardiology Quality Improvement Collaborative (NPC-QIC), a group of 65+ medical institutions. This collaborative lets us learn from one another so that we can deliver better outcomes for babies with HLHS or other single ventricle conditions. As part of NPC-QIC, we have an interstage monitoring program to safeguard a baby’s health between the first and second surgeries.
We provide a continuum of care unlike any other Heart Center in the region with specialized, holistic care for the entire family from prenatal diagnosis throughout childhood. Our Continuum of Care programs include:
- Fetal Heart Care
- Cardiac Neurodevelopment Program
- High-Risk Infant and Single Ventricle Interstage Program
- Perinatal Behavioral Health Service
National Pediatric Cardiology Quality Improvement Collaborative - Tools
National Pediatric Cardiology Quality Improvement Collaborative - COVID-19 Resources
Sisters by Heart
American Heart Association / American Academy of Pediatrics
Mighty Oakes Heart Foundation
Ollie Hinkle Heart Foundation
Mended Little Hearts