Infants with single ventricle physiology need extensive follow-up early in life. The period between the birth and the bidirectional Glenn surgery is known as the “Interstage Period”. We know that these children often have issues with feeding and weight gain, neurodevelopment, and heart rhythm and function problems that can lead to frequent cardiology visits, planned and unplanned procedures and hospitalizations, and even death. Participation in specialized programs with specific expertise in the care of this fragile population has been shown to improve growth, development, and survival in these infants.
During the Interstage Period, our babies with single ventricle physiology are followed every 2-4 weeks in our High Acuity Transition (HeArT) Clinicby our dedicated Tele-Interstage Home Monitoring (Tele-IHM) Program. In addition to frequent visits to clinic, families are enrolled in our Tele-IHMprogram, which uses a digital home monitoring platform to help families monitor for “red flag symptoms” such as dips in the oxygen levels, abnormal heart rates, poor feeding, or poor weight gain. The program also includes weekly video calls to review the home monitoring data and address any parental concerns. This all helps us to keep patients safe while allowing our families to stay at home where they belong as much as possible.
After the bidirectional Glenn operation, typically performed at 4-6 months of age, children with single ventricle physiology are often more medically stable. The IHM team helps families shift their focus from intense medical monitoring to optimizing their child’s development and quality of life. These children typically require less frequent cardiac follow-up (every 2-6 months) and families may chose totransition care away from the main hospital and to a pediatric cardiologistat one of the Lurie Children’s outpatient centers or with a community cardiologist closer to home.
TheHeArT Clinic team is led byMedical Director, Kiona Allen, MD,and pediatric nurse practitioner, Michelle Steltzer, MSN, APRN-NP, CPNP, AC/PC,ofthe Lurie Children’s Single Ventricle Center of Excellence. Our entire clinical team is dedicated to assisting neonates and infants with single ventricle physiology to grow and thrive.We will coordinate care with you and your pediatrician to ensure that your child is maintaining safe oxygen levels and moving towards their next surgery.During a HeArT Clinic Appointment,you may see feeding therapists,physical therapists,occupational therapists,dieticians,andsocial workersin addition to your cardiologist and the rest of your Single Ventricle Center of Excellence team. This multidisciplinary team will work together to optimize healthy outcomes, foster developmental care, and facilitate smooth transitions between the hospital and home.
What to Expect
During a HeArT Clinic Appointment, your baby will also likely get cardiac testing. This could include:
Research shows that children with single ventricle physiology are at risk for a variety of neurodevelopmental and psychosocial issues in the long term, even if they seem to be meeting their developmental milestones early on. Continued and careful surveillance by a team with specific expertise in the challenges faced by our cardiac patients is critical to ensure these children have the best possible long term functional outcome and quality of life.With this in mind, we refer many patients to theNICU-Cardiac Neurodevelopmental Program (NCNP) at Lurie Children’s.This is one of only a few programs in the country that provides individualized care to ensure these high-risk children reach their full potential later in life. The multidisciplinary team of experts in the NCNP program works with children and their families to identify and address any developmental concerns and to help families build a solid foundation for later learning and future success. The program follows children from birth through graduation from high school.
Our Single Ventricle Center team and HeArT Clinic can be reached by calling Emilie Weisberg at 312.227.8588.
In addition to in-person visits, we now offer telemedicine visits via video or phone. Some appointments will still require you to be seen in-person, but your physician and care team will let you know if a telemedicine appointment is available.