What to Expect in the Single Ventricle Center of Excellence
Children with Single Ventricle May Have a Series of Operations
Children born today with single ventricle undergo a series of operations that may begin soon after birth, eventually progressing to the Fontan operation over their next few years of life. Infants and young children with this condition are cared for in our comprehensive Single Ventricle Center of Excellence.
Consultations with Pregnant Women & Care for Infants
The Single Ventricle Center of Excellence Program is available at any point in the patient and family’s congenital heart disease journey. Patients referred before the baby is born will meet with our multidisciplinary team in the Comprehensive Fetal Clinic. During this visit, families tour the Regenstein Cardiac Care Unit and meet with cardiologists, cardiac surgeons, neonatologists and social workers. Families will also meet with nurse practitioners from the High Acuity Transition (HeArT) Clinic, Home Monitoring Program (HMP) and the NICU-Cardiac Neurodevelopmental Clinic. A comprehensive roadmap will be provided guiding families through what to expect after birth. Once the baby is born, our team continues to work with the future pediatrician and referring cardiologist to prepare for a seamless transition to the outpatient setting.
Care for infants with single ventricle is initially coordinated through our High Acuity Transition (HeArT) Clinic and the Home Monitoring Program (HMP). The HeArT Clinic is led by a dedicated nurse practitioner from the single ventricle team who meets with families before a baby is born and works with the cardiology team that referred the patient. The HeArT Clinic can provide cardiology services directly or on a consultation basis. This ongoing monitoring helps families manage follow-up care that children with single ventricle need. After patients have the bidirectional Glenn procedure, their care is transitioned back to the primary cardiologist.
Care for Children & Teens
Patients with single ventricle who are referred after birth will undergo a comprehensive evaluation by our multi-disciplinary team. Older patients with prior Fontan surgeries are also cared for by our single ventricle team. Our team provides a flexible service model ranging along a spectrum from primary cardiology follow-up visits through “as needed” consultative services. Frequency of follow-up with our team is based on a collaborative discussion with the family and the primary cardiologist. Patients may be seen in the hospital or at an outpatient center. Requests for evaluation can be made by inpatient care teams, outpatient cardiologists or by families themselves.
Cardiovascular Bridge Program to Adult Care
For many teenage patients, the transition from pediatric to adult care can be confusing and frustrating, often resulting in gaps in treatment. For young adults with complex congenital heart disease, this can be particularly dangerous.
This program facilitates collaboration between adult and pediatric cardiac specialists and ensures continuity of care as patients transition to independent adulthood. Designed for patients 16-26 years of age, the Cardiovascular Bridge Program allows pediatric patients to be seamlessly integrated into Northwestern Medicine’s Adult Congenital Heart Disease Program.
Prior to your first visit, all health records (medical, arrhythmia, and surgical history and reports, as well as cardiac images on CDs or DVDs) are reviewed by the single ventricle team before the patient comes to our center for evaluation. Additional subspecialty appointments are coordinated on an as needed basis. This may include a further consultation with a gastroenterologist, hepatologist, immunologist, endocrinologist or hematologist. Based on the patient’s age and history, additional testing such as echocardiogram, Holter monitor, blood work, cardiac MRI or CT, cardiopulmonary stress test, cardiac catheterization, and intracardiac electrophysiology study may be performed at Lurie Children’s or Northwestern Memorial Hospital.
Ongoing & Follow-up Care
All patients with single ventricle will require periodic cardiac reevaluations throughout their lifetime. The single ventricle team is able to provide a spectrum of care from primary follow-up to periodic consultations prior to major procedures or at times of transition – typically prior to surgery, in early adolescence, and as patients prepare to transition to adult care. Each child’s care is coordinated by the single ventricle nurse practitioner and a continuity cardiologist from the team.
Make an Appointment
Evaluation in the comprehensive Single Ventricle Center of Excellence can be arranged through Kara Barto at 312.227.4403.
The Division of Cardiology is committed to excellence in the care of young patients with congenital and acquired heart disease — from the fetus to the adult. Our mission is to foster a collaborative environment in which expertise in cardiac issues is cultivated through the promotion of research, education, and prevention.