Shaping the future of pediatric heart care

Understanding the root causes of congenital heart disease (CHD) in each of our patients and creating personalized lifelong treatment plans requires a collaborative multidisciplinary approach — this is the cornerstone of our cardiac program. 

Teamwork and collaboration have always been and continue to be an important part of the work we do each and every day to support the patients and families of the Herma Heart Institute and provide the best and most comprehensive, coordinated and patient-centered care. This year has been no exception. In fact, our 2024 accomplishments demonstrate the power of collaboration and its impact on innovation and advancements in research and patient care.

Our program continues to support cutting-edge science and quality improvement and outcomes studies that advance the care we provide our patients and families in various stages of the life cycle — from fetal into adulthood. In 2024, we supported many multidisciplinary studies, including the expansion of the Educational Achievement and Partnership Program in its efforts to advance lifelong learning and educational attainment for kids with chronic illnesses. We also continue to support the careers of promising junior physicians with research interests and create opportunities to address new initiatives. In 2024, this included programs assessing the physical activity needs of kids with complex CHD, advancing surgical innovations using patient-specific imaging to generate 3D individualized anatomical models for improved planning and outcomes and enhancements to our Norwood pathways. The Herma Heart Institute takes enormous pride in participating in new and compelling initiatives that have the potential to improve the lives of the children of Wisconsin and beyond. The combination of committed institutional investment along with the “team science” culture has significantly leveraged our success in securing extramural funding, making us one of the leading heart institutes for quality, outcomes and research in the nation.

As the Herma Heart Institute steps into the next era of growth, we are deepening our commitment to our mission of advancing patient care while strengthening our infrastructure. We are fortifying our roots to support the program’s planned advancements and increasing collaborations to improve the physical, social and mental health of kids born with structural cardiovascular anomalies. Over the next few years, we plan remarkable new initiatives to further leverage our cardiovascular precision medicine program that includes expansion of our patient biobank and tissue engineering developments.

Together, we are grateful for the opportunity to lead a program that trains the next generation and serves cardiac patients and families in Wisconsin.

Joy Lincoln, PhD
Director of cardiovascular research
Herma Heart Institute  

Enhancing preoperative planning with 3D visualization   

For decades, cardiothoracic surgeons have relied on echocardiography, CT scans and MRIs to plan their surgical approach. Now virtual reality and 3D modeling are transforming the Herma Heart Institute’s preoperative planning process.

Virtual reality is nothing new for the Herma Heart Institute — in 2018, it became one of the first sites to pioneer the use of the Stanford Virtual Heart as a virtual reality education tool for providers and patients to explore different heart defects in an immersive environment. We also used virtual reality to provide an immersive experience during the Heart Summit, where a group of some of the world’s greatest medical minds gathered to watch an open-heart surgery live in 3D while interacting in real time with the surgeon.

Then in 2023, cardiothoracic surgeon Michael Mitchell, MD, asked the team’s 3D experts — biomedical engineer John LaDisa, PhD, and pediatric cardiologists Kasey Chaszczewski, MD, and Ben Goot, MD — to model some complex surgical baffle repairs. The trio used the patients’ cross-sectional imaging to create a virtual reality model and then a printed model, which they presented at the next week’s surgical conference. The cardiology and surgical teams were so excited about the possibilities that the Herma Heart Institute decided to embrace 3D modeling as a part of standard preoperative preparation for complex surgical cases.

“The 3D reconstructions have been very helpful in developing a targeted approach to the operation,” said Dr. Mitchell, division chief of pediatric cardiothoracic surgery at Children’s Wisconsin and co-surgical director of the Herma Heart Institute. “We determine what is possible and what is most optimal, and then it makes the operation itself a lot more facile because we have a really good understanding of what we can accomplish anatomically and what pitfalls to watch out for.”

In the past year, the Herma Heart Institute has modeled 10 cases in virtual reality, and with funding from Project Bubaloo, the team recently invested in new 3D software.

“Our goal is to inform surgical decision-making so that we minimize the surprises for the surgeon and help them lay out the best game plan before going into the operating room,” said Dr. Chaszczewski. “We will model where a patch might go in a surgical procedure and can see what the heart would look like after a proposed surgical intervention. In certain cases, we’ve identified that a particular surgery is not the best option and that we need to pursue a different strategy.”

It’s a huge step up from the 2D images that surgeons have traditionally used to inform their planning. “Creating a 3D model eliminates variability when it comes to creating spatial recognition in your head and allows everyone to be able to visualize where a patch might be placed, where an additional connection might be, and where problems in the operating room might arise.” said Dr. Chaszczewski.

The 3D modeling is particularly helpful for determining the best surgical approach for double outlet right ventricle cases, which can be repaired in different ways depending on the patient’s anatomy.

The team has also used the technology to plan complex intracardiac reconstructions that involve the pulmonary veins, Ebstein malformation of the tricuspid valve, repair of the mitral valve in patients with Shone’s complex or small left-sided structure and complete atrioventricular canal defects.

“Our goal is to continue to identify specific anatomic pathologies that might benefit from this technology,” said Dr. Chaszczewski.

While more pediatric centers are beginning to embrace virtual reality for preoperative planning, there’s more to be done on the research side to demonstrate the clinical impact. One of the most important questions that the Herma Heart Institute team is trying to answer: how do you quantify whether 3D modeling is making a difference?

“This is actually a hard question to answer,” said Dr. LaDisa. “But we’re putting a fair
amount of time into specking out quality improvement and research-based activities that will allow us to answer that question. We think that’s a way we can contribute to the field.”

The team also wants to identify which aspects of the models are most helpful to surgeons and then refine those features so that they’re even more effective.

In the meantime, the Herma Heart Institute’s surgeons are grateful for the enhanced perspective. 

“It gives you a big advantage because you can see in advance some of the details and some of the relationships with a higher degree of accuracy. It allows us to do the next generation of repair work with a very careful, well-thought-out plan,” said Dr. Mitchell. “And with the advantage of having time to prepare in advance, I think we get much better results than if we’re making all of the decisions for the first time on the operating table.” 

Questions about our 3D visualization work? Please email us at hermaheartinstitute@childrenswi.org. 

New interest fuels Project ADAM’s growth

When NFL player Damar Hamlin suffered a sudden cardiac arrest in the middle of a game in 2023, millions watched on TV as medical staff sprang into action and successfully saved his life with CPR and an automated external defibrillator (AED). The dramatic scene illustrated what Project ADAM leaders at the Herma Heart Institute and affiliates across the country already knew: planningand training for cardiac emergencies is critical in protecting children and adults from sudden death. 

“Our work has always been important and has been recognized for years,” said Alli Thompson, the national and Wisconsin administrator for Project ADAM, which works to equip and prepare schools for sudden cardiac emergencies. “But the Damar Hamlin event took it to another level and truly shined a spotlight on the importance of Project ADAM’s work.”

Project ADAM (Automated Defibrillators in Adam’s Memory) started in 2000 after 17-year-old Wisconsin native Adam Lemel died from sudden cardiac arrest during a high school basketball game. At that time, AEDs were not accessible in schools, and prompt bystander CPR was often delayed because sudden cardiac arrest was not always recognized as the cause of sudden collapse and apparent seizures. 

The organization’s growth has accelerated in recent years, and now there are 45 affiliate programs across 33 states. In 2024, Project ADAM partnered with more than 1,800 new schools and trained more than 7,000 school staff in how to respond to cardiac emergencies.

But perhaps the most meaningful metric is how many lives have been saved since Project ADAM began at the Herma Heart Institute in 2000 — more than 250 and counting. 

“At least half of the people whose lives have been saved are adults, so this program is not just for kids,” said Anoop K. Singh, MD, Project ADAM’s medical director and medical director of pediatric cardiology at Children’s Wisconsin. “Schools are really a hub for all people. It’s estimated that on any given day, 20 percent of the U.S. population is in a school.”

Survival rates for sudden cardiac arrest are typically around 10 percent, but in schools that are prepared, the survival rate approaches 70 percent. This past year, a Milwaukee Public Schools teacher at 95th Street School, a Project ADAM Heart Safe School, was saved by quick-thinking colleagues when she collapsed suddenly in her classroom after coming in from a fire drill. In the 11 minutes it took for emergency medical services to arrive on the scene, the teacher’s colleagues administered CPR and delivered a shock from the school’s AED, saving her life.

AED legislation has also become a hot topic since Damar Hamlin’s collapse on national TV. Project ADAM has joined the National Football League, American Heart Association and other organizations in the Smart Hearts Sports Coalition. The coalition is advocating for all 50 states to adopt legislation to implement evidence-based policies that could prevent sudden cardiac death in high school students. Already this year, Michigan and Tennessee have enacted related legislation, and efforts are underway in other states, including Wisconsin. 

“This national movement presents a great opportunity in Wisconsin to advocate for the protection of our students, staff and visitors in the event of a sudden cardiac arrest, as there is currently limited legislation related to access to AEDs for schools and athletics,” said Thompson. “I think we’re going to start to see some impactful legislation that strengthens the work that Project ADAM has been committed to for decades.” 

Grateful family spotlight

A heartfelt mission 

Project Bubaloo was founded by local mother Callie Chiroff in honor of her son Theo James “Bubaloo” Schlicht, who was a patient at the Herma Heart Institute. Since his passing, Project Bubaloo has raised more than $750,000 in support of research, education and awareness for congenital heart disease. Over the past year, a portion of these funds has been dedicated to enhancing both patient and staff education at the Herma Heart Institute. 

Project Bubaloo was able to help fund Elemeno, a new tool for our cardiac intensive care unit (CICU) team that has made bedside education available for our staff and includes our Norwood pathway guidance, chest tube management, etc. They also helped fund a quality improvement project that equipped every room in the CICU with research-backed developmental kits. 

A few Herma Heart Institute staff have received grants from the Project Bubaloo Research Fund. This past year, three different research projects were funded: 

• Prevalence of MYH6 variants in congenital heart disease patients with heart failure — Tracy Geoffrion, MD, MPH, and Aoy Tomita-Mitchell, PhD 
• Sedation practices in the CICU — Matthew Amidon, DO
• REVISIT-3D (Real-time segmentation, virtual image modification, surgical intervention modeling and 3D printing  or improved preoperative surgical preparedness and acute outcomes) — Kasey Chaszczewski, MD, Benjamin Goot, MD, FASE, Michael Mitchell, MD, and John LaDisa, PhD
  
  We are grateful to Project Bubaloo for all that they do to support our clinical and research teams in their drive to push innovation forward and provide the best and safest care for our patients. 

Transitioning to new digital monitoring for interstage patients

More than 20 years ago, the Herma Heart Institute was the first pediatric cardiac program to develop and implement an Interstage Home Monitoring Program, aimed at increasing survival for babies with hypoplastic left heart syndrome (HLHS) and other single ventricle heart conditions. The Interstage Home Monitoring Program allows providers, with the help of parents/guardians, to track a patient’s oxygen saturation levels, feedings and weight and enables them to quickly identify any health changes that may require swift intervention. 

“The Interstage Home Monitoring Program has allowed so many of our high-risk patients to develop, thrive and bond with their families in their home environment while also being closely monitored, which has reduced the risk of life-threatening complications,” said Stephanie Handler, MD, pediatric cardiologist and program director of the Interstage Home Monitoring Program at the Herma Heart Institute. The Interstage Home Monitoring Program has also been shown to improve nutrition and growth, neurodevelopment and overall survival, and is now a standard of care at cardiac centers both nationally and internationally. 

Recently, the Herma Heart Institute implemented a new digital home monitoring platform. This secure, mobile, telehealth application allows for easy data entry, has Bluetooth capability for downloading weights obtained on the home infant scale, performs calculations related to feeding volumes and weight trends, and helps reduce the risk for errors. The platform also allows for HIPAA-compliant transmission of patient images and videos to the Herma Heart Institute Interstage team through an electronic medical record (EMR)-integrated application. 

“This platform has been incredible," said Jena Tanem, APNP at the Herma Heart Institute. "Having all of this information at our fingertips has transformed the way we care for our single ventricle patients. Our provider teams are now able to view data in real time and promptly investigate any concerning clinical findings.” 

This past year, the Herma Heart Institute Interstage Home Monitoring team presented 20 years of outcomes data related to their Norwood patients who were discharged into the program. Since 2005, they have not had any mortalities in their home-monitored patients. “As a clinician, it has been incredibly rewarding to witness not only the inception but also the transformation of the Interstage Home Monitoring Program over the last 24 years and see the positive impact that it has had on patients and their families,” said Nancy Rudd, APNP at the Herma Heart Institute. 

Empowering patient families
at home and in the classroom 

The Herma Heart Institute at Children’s Wisconsin launched the Educational Achievement Partnership Program (EAPP) in 2015 to advance long-term educational achievement in children with chronic illnesses and provide every child the opportunity to reach their optimal potential.  While the EAPP started as a cardiology service, it began expanding to several additional pediatric populations in 2021. This past year, the program underwent significant restructuring to extend services hospital-wide and support children with all types of chronic illnesses. “The new vision for the program will allow us to support families across the state and nation by empowering parents and school staff with the EAPP’s best practice strategies for home, health and school care coordination,” said Kyle Landry, MEd, program manager of the EAPP.

As part of the program’s realignment, Children’s Wisconsin has joined seven other pediatric institutions as part of the nationwide School-Friendly Health Systems (SFHS) Collaborative, which strives to help children achieve optimal health and reach their full academic potential. Two of the values that are central to the SFHS framework, health care equity and shared power with families, were central pillars of the EAPP’s restructuring, which was funded with a Herma Heart Institute Innovation Fund grant and Advancing a Healthier Wisconsin grant. This funding supported two projects that have played a key role in driving the program’s evolution forward.

School-Friendly After Visit Summary Project 

The EAPP has been working closely with cardiac physicians and nursing staff to develop a school-friendly after visit summary (SF-AVS) by adding a “what school needs to know” section — a streamlined way to give patient families information that will help school teams understand the child’s medical condition and health and learning risk factors. The SF-AVS also includes a “health-body-brain connection logic chain,” which explains the complex relationship between pediatric heart disease and physiological and neurodevelopmental sequelae in language that families and school staff can understand. 

The EAPP plans to continue this project in 2025 to integrate the SF-AVS into workflows at Children’s Wisconsin cardiac clinics throughout the state and develop customizations for specialty cardiac conditions. The hope is to eventually create SF-AVS templates that can be used in other specialty clinics beyond cardiology. “It has been invaluable to work with a multidisciplinary, clinical team as we design and refine the school-friendly AVS, and I am so excited to see where the program has its greatest impact among our patients and families as we continue to roll it out,” said Christie Ruehl, JD, MBA, senior program manager of EAPP.

Project RECESS: Reimagining EAPP’s continuum of service for equity, effectiveness, efficiency, satisfaction & sustainability  

Inspired by the SFHS framework, Project RECESS has helped the EAPP team shift from being a hands-on service provider to a limited number of families to supporting patients and families as an empowerment coach. The overall goal of Project RECESS is to improve program outcomes, efficiency and sustainability while helping parents and guardians become more self-sufficient in managing their child’s home, health and school care coordination.  

One of the ways that the EAPP is helping empower families and encourage self-sufficiency is by providing easily accessible resources like a six-part “School Success Coaching” webinar series and one-on-one consult services. Since the shift in their approach, the EAPP has been receiving positive feedback from families. Post-webinar evaluations have shown a 95 percent overall satisfaction rate from families. The parent of a 4th grade student said: “I wish I would have been able to attend this years ago. For many years, I felt like I was drowning in this new world of special needs and medical complexities. Knowledge like this is very helpful for me.”

The EAPP received a new $250,000 grant from the Advancing a Healthier Wisconsin Endowment to continue this work for the next two years. With this funding, the EAPP team will continue its webinar series biannually focusing on:

1. The parent as the project manager
2. The link between health and learning
3. Managing health at school
4. Explaining the impact on learning
5. Supporting education plans
6. Planning for the future

“We are looking forward to building on our partnerships with schools and communities and sharing our model with other health systems,” said Cheryl Brosig, PhD, medical director of EAPP and chief of pediatric psychology and developmental medicine at Children’s Wisconsin. “The EAPP is seen as a leader in this work nationally, and other hospitals across the nation want to learn from us.” 

New clinical faculty

Children’s Wisconsin welcomes the following faculty members to the Herma Heart Institute

Bradley Johnson, MD, has joined our Adult Congenital Heart Disease (ACHD) Program as a cardiologist, after completing his ACHD fellowship at the Herma Heart Institute. He is also an assistant professor of cardiology at the Medical College of Wisconsin. 

Osamah Aldoss, MD, comes to us from University of Iowa Stead Family Children’s Hospital. He is an interventional cardiologist, who has interest in transcatheter valves and working with ACHD patients. He is also a professor of pediatric cardiology at the Medical College of Wisconsin.

Graduated fellows

The Herma Heart Institute congratulates our graduated fellows

Felipe Murguia, MD, completed his fellowship in pediatric cardiology at the Herma Heart Institute and is now working on an advanced imaging fellowship at UT Southwestern.  

Nicholas Rebhan, MD, completed his pediatric cardiology fellowship at the Herma Heart Institute and is currently in a fourth-year fellowship, focused on electrophysiology, at Vanderbilt University Medical Center.

Tracey Thompson, MD, completed her pediatric cardiology fellowship at the Herma Heart Institute and is currently pursuing advanced training in adult congenital heart disease. 

Helping to shape the future of pediatric cardiology: The Herma Heart Institute hosts two conferences in 2024

This past year, the Herma Heart Institute was honored to host two prominent cardiac conferences in Milwaukee, Wis. 

The first was the 18th International Conference on Pediatric Mechanical Circulatory Support Systems and Pediatric Cardiopulmonary Perfusion at the Pfister Hotel on May 9-10. Robert Niebler, MD, medical director of cardiac critical care at the Herma Heart Institute, co-chaired the event. 

The meeting brought together clinical specialists in the fields of pediatric cardiology, cardiothoracic surgery, critical care and bioengineering to discuss research, clinical methods, groundbreaking developments and challenges in the field. Five countries, 17 states, and more than 35 different institutions were represented among the speakers and participants.

Molly Brickler, APNP, Michael Mitchell, MD, Robert Niebler, MD, and Alexander Raskin, MD, from the Herma Heart Institute, presented on a variety of topics. 

Additionally, from Sept. 12-13, the Herma Heart Institute hosted the Midwest Pediatric Cardiology Society Annual Meeting at Saint Kate - The Arts Hotel. It was a record-setting conference with more than 160 attendees from 12 states and 22 institutions across the Midwest. 

Attendees included physicians, nurses and medical staff who care for patients in the pediatric or adult congenital heart disease populations. The group came together to explore and collaborate on new research and quality improvement initiatives happening throughout the Midwest. Many staff from the Herma Heart Institute gave presentations or presented on a poster. 

The Herma Heart Institute is proud to have supported both of these conferences and highlighted the important contributions that our team has made to help advance the field of pediatric and adult congenital cardiology.