The HeArT (High Acuity Transition) Program provides intense outpatient follow-up care for cardiac patients who are at the greatest risk of heart failure, growth problems and neurodevelopmental impairments.
Infants with congenital heart defects (CHD), especially single ventricle physiology and hypoplastic left heart syndrome, need frequent and extensive follow-up care in their early infancy. Patients with single ventricle heart defects typically undergo three cardiac surgical procedures during the first few years of life. During the gaps between the first and second operation, these children are at risk for various cardiac problems, as well as feeding issues and poor weight gain. Such patients need frequent cardiology clinic visits and readmissions to the hospital in between planned and unplanned procedures and hospitalizations.
Our HeArT Clinic is designed to provide highly individualized outpatient care to the most fragile children with heart disease. The HeArT Clinic team consists of a dedicated pediatric nurse practitioner and cardiologists from Lurie Children’s Single Ventricle Center of Excellence with special expertise in the care of children with complex congenital heart disease. Our clinical staff is dedicated to assisting neonates and infants with single ventricle physiology in order to optimize healthy outcomes, foster developmental care, and facilitate smooth transitions between the hospital and home.
Our patients are also enrolled in our Interstage Home Monitoring Program (IHM). These patients are sent home with special medical equipment, such as a hospital grade pulse oximeter, baby scale, and specialized iPad to log all daily intake and measurements. This technology helps the team to monitor their patient's progress at home, and detect subtle changes that need further evaluation. Our dedicated nurse practitioner and nurse coordinator meet families prenatally and then work in weekly collaboration with the family, pediatrician, and local referring cardiology team to ensure the best possible outcome after the baby is born. Our team partners with families to carefully monitor each patient’s oxygen saturations, growth, and nutrition in addition to coordinating follow-up with our NICU-Cardiac Neurodevelopmental Clinic (NCNP). Later on, the program helps patients with complex heart disease transition back to their primary cardiologist or seek continued care in our Single Ventricle Center of Excellence.
What to Expect
An initial appointment will be scheduled prior to discharge from the initial newborn hospitalization. After the first appointment, children are typically followed every two to four weeks depending on the child’s condition. These visits are often coordinated with other important members of the healthcare team such as physical and/or feeding therapists, dietitians, and social workers. In between these comprehensive visits, the HeArT nursing team conducts weekly Telehealth video calls to help reduce the time spent in the clinic. We also use Telehealth to evaluate problems or concerns that arise between visits or calls on an as-needed basis.
While your child is in our care, we will communicate regularly with your referring cardiologist and pediatrician to keep them informed of the child’s status. HeArT clinicians will facilitate all aspect of cardiac care as well as coordinate complex non-cardiac care. The transition back to your child’s primary cardiologist will be coordinated to accommodate the needs of the both the primary cardiologist and the child. Our team is also available on a consultative basis.
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.
Questions & Concerns
If you have any questions or concerns after your child is discharged, our team is available to take your call.
The Single Ventricle Roadmap is challenging and requires multiple hospitalizations and procedures. Our hospital has a close relationship with the Pediatric Congenital Heart Association (PCHA) to help support your needs. We recommended reviewing their guided questions to help you ask your healthcare team about various medical concerns, and watching this video to learn how we are helping PCHA to conquer congenital heart disease.
For single ventricle neonates, the Jackson Chance Foundation generously offers families a parking pass during the neonatal stay at Lurie Children's. Once your child enters future hospitalizations, Some Assembly Required, a parent-driven foundation, provides further support for parking needs.