Congenital Heart Center
Extraordinary Heart Care for Patients with Pediatric and Congenital Heart Disease (CHD)
FROM FETAL LIFE THROUGH ADULTHOOD
WHY CHOOSE US
EXTENSIVE EXPERIENCE
• As an international referral center, the Congenital Heart Center at University of Michigan Health
C.S. Mott Children’s Hospital is one of the largest and most experienced programs worldwide
EXPERT TEAM, DEDICATED SERVICES
• Expert specialists across every facet of heart care, spanning the most common disorders to groundbreaking therapies for complex cases
• Dedicated inpatient and outpatient units with specialized cardiac teams providing 24/7 care
RELENTLESS FOCUS ON OPTIMIZING QUALITY AND OUTCOMES
• Excellent outcomes for our highly complex patient population
• We lead multiple ongoing projects geared toward improving quality and safety, and sharing best practices to enhance care for children with heart disease around the country
COMPREHENSIVE LIFELONG CARE
• Seamless care from fetal life through adulthood, focused on enhancing long-term outcomes and quality of life
• On-site Von Voigtlander Women’s Hospital birthing center and collaboration with Frankel Cardiovascular Center’s top-ranked adult cardiac surgery program
• Longitudinal Follow-Up Program, Interstage Home Monitoring, Single Ventricle Multidisciplinary FollowUp Clinic and Neurodevelopmental Program
• New Cardiac Home Advanced Monitoring Program and Psychosocial Support (CHAMPPS) Program
COORDINATED CARE, CLOSE TO HOME
• 14 clinic locations in Michigan and northern Ohio, and collaborating partners across the region bring our expert clinicians close to you
• Remote echocardiography and telemedicine capabilities
• Comprehensive transport services
INNOVATIVE TREATMENTS AND CUTTING-EDGE RESEARCH
• Leaders in research and innovation, providing patients with access to the latest treatments, devices and clinical trials
• Pediatric Heart Network core site
• Leaders in multicenter QI and clinical outcomes registries
FAMILY SUPPORT AND RESOURCES
• Patient and Family Centered Care program, on-site Ronald McDonald House, support for travel and lodging coordination, hospital school services, spiritual care, psychological support and many other resources
2024 HIGHLIGHTS AT A GLANCE
FONTAN AND SINGLE VENTRICLE CLINIC EXPANSION
In expanding the work of our comprehensive, multidisciplinary Fontan patient clinic, the single ventricle team is advancing Fontan patient care and research through a comprehensive approach that includes a multidisciplinary clinical practice guideline for Fontan surveillance. This clinical testing data is stored in an Electronic Health Record (EMR)-based patient registry that supports clinical informatics tools, including daily rounding reports, along with a quality improvement (QI) dashboard that will track population health and patient adherence to surveillance protocols. Additionally, this registry now serves as an IRB-approved data warehouse for research applications. Their commitment to pioneering the future of Fontan care also includes mentoring an advanced fellow in heart failure and Fontan surveillance and community provider education through the Fontan FOCUS educational lecture series.
TRANSITION PROGRAM SEES GROWTH
The Transition Program is dedicated to guiding adolescent and young adult patients through the complex process of transitioning from pediatric to adult care. Through a structured approach led by Michael Joynt, M.D., and the University of Michigan Health Adult Congenital Heart Program, the Transition Program ensures that patients are well-prepared to manage their heart health independently as they enter adulthood. Dedicated transition visits with our transition coordinators Andrea Craven, N.P., and Elizabeth Stalder, N.P., are offered to all of our patients across the state. With mental health support through our M-COPE team, and with educational support from our transitionfocused webinars and virtual patient group meetups, the Transition Program has helped hundreds of patients prepare for lifelong heart care.
NEW DEVICES TO COMBAT PEDIATRIC HEART FAILURE
David Peng, M.D., and Vikram Sood, M.D., medical and surgical directors of pediatric heart failure and ventricular assist devices at Mott, have led the effort in bringing the latest technology to combat heart failure at Mott. This includes cutting-edge heart failure
medications, outpatient hemodynamic monitoring, and the full range of ventricular assist devices from the miniaturized percutaneous Impella to the Total Artificial Heart to support and promote healing in the most critically ill children.
ADVANCING CARDIAC REHABILITATION AND EXERCISE CARE
HEART Club, a telemedicine-based exercise program, has demonstrated improved function and quality of life among participants and is expanding efforts to enhance access to exercise testing and training. Our exercise team leads national initiatives through learning networks, research, and provider education to close care gaps and advance outcomes in congenital heart care.
PUTTING MENTAL HEALTH AT THE FOREFRONT OF CARDIAC HEALTH
Our M-COPE Psychosocial Services and Research Program continues to serve as an exemplary model of integrated and embedded psychosocial and mental health care in pediatric heart centers. Our M-COPE team of 16 psychosocial clinicians, including social workers, child life specialists, psychologists, and education liaisons, is led by Dr. Melissa Cousino, Ph.D.
Recent M-COPE Program highlights include a first-of-its kind transition and ACHD-focused cardiac psychology fellowship, with specialized training occurring across pediatric and adult health psychology and our nationally recognized telemedicine resilience and wellbeing group program for adolescents and young adults with heart disease, WE BEAT. In partnership with colleagues across the heart center, our M-COPE team helped to develop the iECHO program which utilizes 3D-printed echo probes, a game board, social story and child life and psychology support to reduce echo-related distress for children and families. Currently, our M-COPE team leads or contributes to 10 grant-funded studies regarding psychosocial care in pediatric heart disease.
HOME BASED CARE FOR CHILDREN AND FAMILIES WITH COMPLEX HEART CONDITIONS
Thanks to the philanthropic gift from the Wayne and Joan Webber Foundation, the Congenital Heart Center will soon be launching the Cardiac Home Advanced
Monitoring Program and Psychosocial Support (CHAMPPS) Program to deliver comprehensive, home-based care and support to pediatric patients with congenital and acquired heart diseases, along with their families. CHAMPPS aims to provide safe, compassionate, and family-centered care that leverages advanced technology, fosters excellent communication and prioritizes psychosocial wellbeing. By reducing admissions, facilitating earlier discharges, and decreasing the necessity for hospital-based care, CHAMPPS will enhance the quality of life for our cardiac patients with high-risk, complex conditions. Initially, the program will build upon the successes and important home-based care delivery provided through the Interstage Home Monitoring Program, which has been led by Alicia Valentini, N.P.
PEDIATRIC CARDIOTHORACIC UNIT (PCTU) EXPANSION
The Pediatric Cardiothoracic Unit (PCTU) is a dedicated cardiac intensive care unit staffed 24/7 by in-house cardiac ICU doctors. We care for >450 patients per year who need specialized care for their cardiac problem, including patients before and after cardiac surgeries. The PCTU expanded by one bed for a total of 21 beds.
PEDIATRIC CARDIO-ONCOLOGY CLINIC ONE OF A KIND IN MICHIGAN
To improve cardiology outcomes in pediatric and young adult cancer survivors, the Congenital Heart Center is proud to offer a unique multidisciplinary cardiooncology clinic. This innovative clinic seamlessly integrates cardiology and oncology care, supported by a comprehensive team that includes advance practice providers, psychologists, social workers, school specialists, and dietitians. Led by pediatric cardiologist Heang Lim, M.D., and pediatric hematologist-oncologist Rama Jasty, MBBS, it is the only clinic of its kind in the state. This unique collaboration also enables the delivery of thoughtful, integrative care for patients requiring more intensive cardiac monitoring during cancer treatment.
PROGRAMS AND CLINICS AT A GLANCE
The Congenital Heart Center at University of Michigan Health is located in the state-of-the-art
C.S. Mott Children’s Hospital, a 346-bed, free-standing facility.
Adult Congenital Heart Program
ACHA-accredited program staffed by ACHD boardcertified cardiologists, more than 4,700 visits in 2024
Cardiac Anesthesia Service
10 pediatric cardiac anesthesiologists providing comprehensive anesthesia services
Cardiac Catheterization
Staffed by three pediatric interventional cardiologists with advanced training, performing more than 870 cases in 2024 spanning the full spectrum of congenital heart disease
Cardiac Genetics Clinic
Multidisciplinary team (cardiology, genetics and genetic counseling services) providing coordinated screening, diagnosis, management and counseling for patients with heritable cardiac conditions
Cardiac MRI
Staffed by four pediatric cardiologists with advanced magnetic resonance imaging (MRI) training, nearly 700 pediatric and adult congenital heart disease studies performed in 2024
Cardiac Nursing and Advanced Practice
Providers (APPs)
Specialized inpatient and outpatient teams with prestigious nursing Magnet designation and a team of 30 APPs (nurse practitioners and physician assistants) in various subspecialities caring for children and adults with congenital heart disease
Cardio-Oncology Long Term Follow-Up Clinic
Cardiology and oncology provide specialized care for children with a high risk of developing cardiovascular health complications as a result of cancer treatment
Cardiology Clinics
General and specialty clinics for patients with all forms of congenital and pediatric heart disease at 14 locations across Michigan and northern Ohio
Complex Biventricular Repair Program
Comprehensive surgical planning and innovative procedures to achieve two-ventricle circulation in children with complex anatomy
Congenital Cardiac Surgery
High-volume international referral center, five congenital cardiac surgeons, two dedicated ORs
Echocardiography
Staffed by 14 Mott hospital-based pediatric cardiologists, nine community-based pediatric cardiologists and 14 sonographers with expertise in pediatric and congenital 2D, 3D, transesophageal, and fetal imaging, performing more than 19,000 studies in 2024 across Mott and outreach locations
Electrophysiology & Heart Rhythm Program
Providing a full spectrum of pediatric arrhythmia care including consultation, catheter ablation, cardiac device care, and treatment of genetic arrhythmia syndromes
Exercise Physiology & Vascular Lab
Performs comprehensive diagnostic exercise testing and vascular measurements, and provides therapeutic exercise programs including exercise prescription and home exercise training for adolescents and adults
Heart Failure & Transplant
Staffed by four pediatric heart failure/transplant specialists with advanced training, more than 740 outpatient visits in 2024 and 16 heart transplants, expertise in advanced heart failure management, cardiomyopathy and pediatric ventricular assist devices (VAD)
Hybrid Intervention
Experienced team of surgeons and interventional cardiologists performing hybrid procedures for high-risk single ventricle patients, marginal biventricular repair candidates, complex pulmonary artery interventions, muscular ventricular septal defects and bridge to transplantation
Interstage Home Monitoring
Home monitoring services, care coordination, and education for single ventricle patients and other types of staged surgery
Muscular Dystrophy Clinic
Multidisciplinary clinic (cardiology, neurology, and physical medicine and rehabilitation) serving patients with a wide range of neuromuscular disorders
Neurodevelopmental Program
Multidisciplinary team (cardiology, psychology, neurology, nursing and social work) providing unique inpatient consultation, outpatient evaluation of neurodevelopmental and behavioral concerns, and referral for appropriate treatments
Pediatric Acute Cardiac Care Unit
32-bed unit, multidisciplinary patient-centered pediatric heart care
Pediatric Cardiothoracic Intensive Care Unit
Dedicated cardiac intensive care unit consisting of 21 beds staffed 24/7 by in-house cardiac ICU doctors. We care for >450 patients per year who need specialized care for their cardiac conditions, including patients before and after cardiac surgeries.
Prenatal Program & Fetal Intervention
With 900 fetal echocardiograms performed at our main hospital and more than 900 fetal echos across eight outreach locations in 2024, the Prenatal Heart Program offers a complete range of fetal heart services, extensive counseling, and the full spectrum of fetal cardiac interventions. Care is integrated seamlessly with Von Voigtlander Women’s Hospital, located in the same building as Mott.
Pulmonary Hypertension
Inpatient and outpatient services providing comprehensive evaluation, treatment and follow-up for pulmonary hypertension
Preventive Cardiology Clinic
Specialized care for children with abnormal lipid levels or hypertension to reduce cardiovascular risk
Pulmonary Vein Anomalies Program
Multidisciplinary team (surgeons, interventional cardiologists and a nurse practitioner) developed for the diagnosis and management of pulmonary vein
stenosis in patients with repaired pulmonary vein anomalies associated with complex CHD and those with prematurity and primary pulmonary vein stenosis
Psychosocial & Educational Program (M-COPE)
Renowned psychosocial care program for patients and families across outpatient and inpatient cardiac care. Our team of heart-center dedicated psychologists, social workers, child life specialists, education liaisons, and peer mentors provide emotional support, mental health care, and educational services, as well as lead various related research studies.
Single Ventricle Follow-Up Clinic
Multidisciplinary team (cardiology, gastroenterology, nephrology, neurology, psychology and more) providing comprehensive, coordinated longitudinal care and education for single ventricle patients in coordination with their primary cardiologist
Transition Program
Multidisciplinary team of nurse practitioners, psychologists, social workers, cardiologists and exercise specialists, addressing medical, educational and psychological needs specific to each pediatric patient transitioning to adult care. Nearly 200 transition visits annually offered to patients across the statewide Congenital Heart Center network of providers.
VOLUMES AND OUTCOMES
CARDIAC SURGERY
Our congenital cardiac surgery program is considered one of the highest-volume programs in the nation.*
2024 TOTAL CARDIAC SURGERY VOLUME
*250 cases/year is the benchmark used by the Society of Thoracic Surgeons (STS) to define high-volume centers
We are among the most experienced programs in the nation with high complexity (STAT 5) cases.
Excellent outcomes for our highly complex patient population compared to national benchmarks.
CATEGORY
Our postoperative length of stay (LOS) is substantially shorter compared to national benchmarks.
CLINIC VISITS
15,672 ECHOCARDIOGRAMS
19,543 CATHETERIZATIONS
873
QUALITY IMPROVEMENT
Our unique multidisciplinary quality improvement and safety team spans the Congenital Heart Center and leads multiple ongoing initiatives aiming to optimize quality of care and patient outcomes.
Improving Oral Feeding Outcomes After Neonatal Congenital Heart Surgery
Neonates undergoing cardiac surgery often face challenges with oral feeding due to factors such as sedation exposure and oral aversion caused by oral endotracheal intubation in the ICU.
To address this, a multidisciplinary team in the Congenital Heart Center implemented a quality improvement (QI) initiative, transitioning from oral to nasotracheal intubation for neonates. This approach aimed to prevent oral aversion, reduce sedation exposure, and improve oral feeding outcomes.
Over a six-month intervention period, the percentage of oral feeding at hospital discharge increased from 30% to 43%, and sedation requirements decreased by 29%. Additionally, time to first dysphagia team consultation was significantly reduced, with no increase in complications such as epistaxis, surgical site infections or pressure injuries. These findings highlight the feasibility and safety of nasotracheal intubation and its potential to enhance feeding outcomes for neonates recovering from cardiac surgery.
EPS/ABLATION PROCEDURES
169
DEVICE PROCEDURES
CARDIAC ICU
Our expert care helps patients recover quickly after congenital heart surgery, with short stays in the cardiac intensive care unit (CICU).
Postoperative CICU Length of Stay
n U-M n OTHER SITES
SOURCE: Pediatric Cardiac Critical Care Consortium (PC4) TIME FRAME: 2022–2024 data vs. other high-volume sites
RESEARCH AND INNOVATION
We support groundbreaking research and innovation geared toward driving improvements in care and outcomes and developing new therapies for the next generation.
Michigan Congenital Heart Outcomes Research and Discovery (M-CHORD) Program
M-CHORD is our unique research core within the Congenital Heart Center supported by dedicated faculty and staff. Our comprehensive expertise spans the spectrum of clinical and translational investigation and accelerates novel and collaborative science.
Cardiac
Networks United (CNU) Data Core
We lead Data Core activities for CNU, which integrates nine large networks spanning more than twothirds of the nation’s congenital heart programs. The Data Core houses one of the largest collections of CHD data worldwide and accelerates collaborative research and quality improvement activities.
Pediatric Heart Network (PHN) Core Site
We are one of nine centers across the country selected to participate in the PHN, funded by the National Institutes of Health. Mott has continuously served as a PHN site since 2011, and we were recently selected to continue participation for another seven years, through 2030. Through this network our patients have access to clinical trials of cutting-edge therapies and interventions. A list of active studies can be found at: www.pediatricheartnetwork.org/studies.
U-M Investigators collaborated with the PHN to lead a variety of efforts in 2024. Examples include:
A Multi-Center Trial to Foster Resilience in Teens with CHD
First developed and piloted at U-M, the WE BEAT Wellbeing Education Program is a telemedicinedelivered, psychologist-led, group-based program aimed at fostering resilience and wellbeing in young
people with CHD. A multisite pragmatic clinical trial of WE BEAT will soon be launched through the PHN — representing the first-ever adolescent mental health focused multi-site trial supported by PHN and NHLBI.
COMPASS Trial
Comparison of Methods of Pulmonary Blood Flow
Augmentation in Neonates: Shunt Versus Stent (COMPASS) — the first randomized trial to compare a catheter-based intervention vs. surgery in the CHD population. U-M investigators are collaborating with the PHN and two national CNU registries to lead the COMPASS Trial, which is studying infants with ductaldependent pulmonary blood flow. The trial started in 2022 with U-M as the first enrollment site and continues to be a top enrolling center in the trial.
Longitudinal Follow-Up for Patient’s Enrolled in the Original Single Ventricle Reconstruction Trial (SVR III)
This PHN study is co-led at U-M and is the largest prospective study to date of children with hypoplastic left heart syndrome (HLHS). Because of the study and the significant commitment of all the study participants, families have learned and continue to learn a great deal about the optimal surgical and medical approaches to treat individuals with HLHS.
Fontan-Associated
Liver Disease (FALD) Trial
Our investigators lead this large multi-center study, which is a supplemental study to the PHN Fontan Udenafil Exercise Longitudinal (FUEL) Open-Label Extension (OLE) trial. The FUEL-FALD study completed enrollment and the imminent results will shed new light on Fontan-associated liver disease and potential therapies.
FUEL-2
Congenital Heart Center investigators are participating site in this large, multicenter trial to study the efficacy
of a medication to improve exercise performance in patients with surgically palliated single ventricle congenital heart disease.
Biorepository
U-M leads biorepository efforts for the PHN, supporting investigations in the precision medicine realm to understand unique traits influencing CHD outcomes.
Genetic Determinants of Ventricular Function and Exercise Performance After the Fontan Procedure
In collaboration with the PHN, U-M investigators will lead a study examining the genetic determinants of exercise performance and ventricular function in patients who have had a Fontan procedure. The study promises to provide important insights into the signaling pathways that determine whether a patient will be healthy or have a more difficult course after a Fontan procedure. Understanding these differences may allow the development of novel treatment strategies to improve the health and enhance the quality of life in patients who have had a Fontan procedure.
Additional 2024 Research Highlights:
T-NOX Trial Update
U-M investigators completed enrollment in the T-NOX Trial in 2023, which compared strategies for oxygen delivery (normal versus high levels) in infants undergoing congenital heart surgery. These data have been presented at national meetings and there is a growing interest to bring this to a multicenter study.
Fontan Long-Term Outcomes
U-M cares for one of the largest populations of Fontan patients worldwide, and our investigators lead multiple projects focused on improving long-term Fontan outcomes. Studies include:
• Fontan Circulatory Failure Study: U-M is the lead site for the largest study to date examining the role of Fontan-associated complications, frailty and resilience on heart failure outcomes. The retrospective portion of the study enrolled more than 400 patients with Fontan physiology listed for heart transplant and found Fontan-specific factors that were associated with death before
and after transplant. The study was presented at the American Heart Association 2023 and 2024 Scientific Sessions and received the award for most outstanding research in pediatric cardiology. The prospective arm of the study is ongoing and has enrolled nearly 100 patients with Fontan physiology and heart failure to assess how frailty and resilience affects their outcomes.
• Fontan Wellness Program: Our unique U-M clinical research program is aimed at improving overall wellness and long-term outcomes in adolescents and adults with Fontan-palliated heart disease. This program combines virtual resiliency skills training (WE BEAT) with virtual exercise training (HEART Club). Initial pilot results have demonstrated clinically meaningful improvements in patient emotional resilience, depressive symptoms, grip strength and oxygen consumption. Moreover, patients rate the program very favorably and would recommend to peers. We are excited the WE BEAT program promises to be one of the studies that will be conducted through the PHN in the near future, allowing us to assure that the program is generalizable across multiple centers.
• Fontan Mental Health Study: We are the lead site for this PHN-funded study looking at the associations between social determinants of health and mental health in patients with Fontan circulation. This study uses self-reported and parent-reported measures to assess psychological functioning and adverse social determinants of health in 130 patients. To increase diversity of the study population, two other leading children’s hospitals were included as additional enrolling sites. More than half of the goal number of patients have been enrolled, and the study has been extended into 2025.
Other Studies:
GenoMISC: This NIH-funded study, led by a U-M investigator, will examine the genetic determinants of the severity and cardiac manifestations of MIS-C, a post-COVID hyperinflammatory state associated with significant morbidity. The study cohort will be 400 subjects enrolled in the PHN’s MUSIC study which
described the clinical features of children affected with Multisystem Inflammatory Syndrome after COVID in children (MIS-C).
CHDGenes: U-M was invited to become an enrolling center for the Pediatric Cardiovascular Genomics Consortium, a multicenter collaborative tasked with identifying the genetic causes of Congenital Heart Disease. Based on U-M’s contributions to the consortium through the PHN, we were invited to become an enrolling site for the consortium and look forward to contributing to this important effort.
Clinical trials in pediatric patients with hypertrophic cardiomyopathy: Myosin inhibitors have emerged as a novel and potentially exciting treatment approach for patients with hypertrophic cardiomyopathy (HCM). After very promising results in adults, clinical trials were developed for the pediatric patient population. The SCOUT-HCM and CEDAR Trials are the first trials
of myosin inhibitors, mavacamten and aficamten respectively, in pediatric patients with HCM in the U.S. and U-M enrolled the first patient for the SCOUTHCM Trial.
Automatic fluid management after heart surgery: Researchers at the Congenital Heart Center obtained a grant from the Gerber Foundation to develop a new system for fluid management after heart surgery. The system, called “OTTO,” uses a patent-pending type of artificial intelligence to automatically adjust diuretics. If successful, it would represent a significant step toward precise and personalized medicine using artificial intelligence in congenital heart patients.
Congenital Heart Center 1540 East Hospital Drive Ann Arbor, MI 48109-4204
www.mottchildren.org/ped-heart
EXPERT CARE, CLOSE TO HOME AND ACROSS THE GLOBE
Nearly
COORDINATED SERVICES FOR FAMILIES TRAVELING FOR CARE
• Experience providing seamless care for children around the country and across the globe with ~20% of our congenital heart surgery patients traveling to Mott for expert care from out of state
• Remote echocardiography and telemedicine capabilities
• Comprehensive transport services when transfer is needed
PATIENT AND FAMILY SUPPORT SERVICES
• Patient and Family Centered Care and peer-mentoring program
• On-site Ronald McDonald House
• Travel and lodging coordination and support
• Hospital school and educational services
• Spiritual care
• Child life
• Music, art, technology and pet therapy services
• Social work