The St. Louis Children’s and Washington University Heart Center has a high risk infant interstage monitoring program to help families successfully care for their baby at home. Our program provides support and resources during the interstage period when babies are most fragile.

Our mission is to provide high-quality, comprehensive care for single ventricle patients by utilizing a standardized approach for interstage monitoring.

Infants who fall into the “high risk infant” category are those with a single ventricle anomaly, where the structures on the right or left side are severely underdeveloped. These patients are followed by the High Risk Infant Interstage Monitoring Team throughout the interstage period. The interstage period is defined as the time between initial surgery/intervention shortly after birth and the second surgery. Our goal is to decrease morbidity and mortality associated with this period.

Hypoplastic left heart syndrome (HLHS) is one specific diagnosis that warrants high risk infant monitoring. Babies born with HLHS need three surgeries in the first three years of their lives. The St. Louis Children’s and Washington University Heart Center is working to improve the outcome for these children through careful monitoring between surgeries.

What Is Hypoplastic Left Heart Syndrome (HLHS)?

The left side of your heart is responsible for pumping oxygen-rich blood to the rest of the body. With HLHS, a congenital heart condition, the left side of a baby’s heart does not form properly. This birth defect causes serious problems with blood flow and requires a series of surgeries.

Babies born with HLHS need three surgeries to treat the condition. These surgeries make it possible for the right ventricle to take over and pump the oxygen-rich blood to the body. The procedures are staggered throughout the first three years of a child’s life:

  • The Norwood procedure happens shortly after birth.    
  • The bidirectional Glenn shunt happens between 4 and 6 months of age.
  • The Fontan procedure happens between 2 and 4 years of age.

What Does Our Program Offer?

  • High-quality, comprehensive care for single ventricle patients by providing families with a standardized approach to care.
  • Specialized discharge planning, including home follow-up calls, take-home education and equipment, and caregiver training 
  • Coordinated care with families, cardiologists, and pediatricians between surgeries
  • Around-the-clock availability for phone consultations or emergency assistance
  • Outpatient Feeding Clinic with dedicated speech therapist and dietitian
  • Follow-up in our Cardiac Neurodevelopmental Program
  • Fontan Clinic

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.

Heart Center Staff and the National Pediatric Cardiology Quality Improvement CollaborativeSt. 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.