Tag Archive for: congenital heart disease

Nikki Posnack, PhD

Nikki Posnack, PhD, named as Foglia-Hills Professor of Pediatric Cardiac Research

Nikki Posnack, PhD

Dr. Posnack joins a distinguished group of Children’s National physicians and scientists who hold an endowed chair.

Children’s National Hospital has appointed Nikki Posnack, PhD, as the Foglia-Hills Professor of Pediatric Cardiac Research.

Dr. Posnack serves as a principal investigator for the Sheikh Zayed Institute of Pediatric Surgical Innovation at Children’s National. Her laboratory is part of both the Children’s National Heart and Lung Center and the Sheikh Zayed Institute.

The big picture

Dr. Posnack joins a distinguished group of Children’s National physicians and scientists who hold an endowed chair. Children’s National is grateful to generous donors who have altogether funded 51 professorships.

Professorships support groundbreaking work on behalf of children and their families and foster new discoveries and innovations in pediatric medicine. These appointments carry prestige and honor that reflect the recipient’s achievements and the donor’s commitment to advancing and sustaining knowledge.

Why it matters

Dr. Posnack’s research is transforming our understanding of pediatric cardiac health. She leads a multidisciplinary team conducting pioneering studies on cardiac electrophysiology, environmental exposures during heart surgery and personalized treatments for children. Notably, the team’s findings on plastic chemical exposure during cardiopulmonary bypass operations are influencing clinical care for young patients with congenital heart disease.

“I am deeply honored to be named Foglia-Hills Professor of Pediatric Cardiac Research,” Dr. Posnack says. “It is a powerful opportunity to amplify the mission of my lab: to help make cardiac care safer, less invasive and more effective for kids. The role will help accelerate discovery and bring meaningful innovations from the lab to bedside.”

Moving the field forward

Paul and Barbara Hills and Vincent and Patricia Foglia established this endowed professorship over a decade ago. Through their vision and generosity, they are ensuring that Dr. Posnack and future holders of this professorship will launch bold, new initiatives to rapidly advance the field of pediatric cardiac research, elevate our leadership and improve the lifetimes of children with special hearts.

“This professorship shows the incredible foresight of the Foglia and Hills families, who believe in driving progress through research,” says Wayne J. Franklin, MD, MBA, senior vice president of the Children’s National Heart and Lung Center. “Dr. Posnack is a true leader in the field, and this support will help her continue to push the boundaries of what’s possible in caring for patients with heart disease.”

illustration of a heart

Children’s National announces Heart Research Institute, advancing pediatric cardiac research

illustration of a heart

The research institute aims to transform care and enhance long-term quality of life for children and adults with heart disease — from prenatal stages throughout their lives.

A new dedicated research arm within the Heart and Lung Center at Children’s National Hospital will supercharge efforts to improve the safety, effectiveness and accessibility of pediatric heart care locally, nationally and around the world. The initiative was made possible by over $12 million in philanthropic support for pediatric cardiac research.

“We care for the sickest children and the most complex cases here,” says Yves d’Udekem, MD, chief of Cardiac Surgery at Children’s National and executive director of the Heart Research Institute. “Every challenge in the operating room pushes me back to the lab, to asking questions and finding new ideas that can make care better for children and families. The Heart Research Institute is a place where we can test new ideas, change practice and build new programs. Here, we will change our field. It is already happening.”

The research institute aims to transform care and enhance long-term quality of life for children and adults with heart disease — from prenatal stages throughout their lives. It will focus on five core pillars:

  • Transformative research to uncover the inner workings of heart disease and drive both earlier detection and better interventions for mothers and their babies.
  • Brain and mental health care investigations to support both maternal well-being and the developing brains of children with heart disease.
  • Studies to improve lifelong care for children with critical and chronic heart conditions.
  • Optimization of cutting-edge technology to improve short- and long-term outcomes.
  • Exploring evidence-based strategies to increase heart care accessibility so everyone gets the right care when they need it.

graphic showing research that will occur at the Heart Research Institute

As an integral component within the Children’s National Heart and Lung Center, the Heart Research Institute’s focus on earlier detection, better treatments and wellness support for children and families facing heart conditions can, and will, be directly translated into research-backed, family-centered clinical practices.

“Research is the backbone of every medical breakthrough,” says Wayne J. Franklin, MD, MBA, senior vice president of the Children’s National Heart and Lung Center at Children’s National. “It drives us to refine and enhance our clinical practices, to deliver the best possible care for children and families and never settle for ‘good enough.’ Our dedicated focus on research and innovation through our Heart Research Institute will set new benchmarks in cardiovascular care.”

Advertisement for the 2025 World Congress of Pediatric Cardiology and Cardiac Surgery

Cardiac rehabilitation for children at WCPCCS

Advertisement for the 2025 World Congress of Pediatric Cardiology and Cardiac Surgery

Dr. Amedro presented his research on three-pronged cardiac rehabilition for children at WCPCCS in Hong Kong.

Adult cardiac rehabilitation models can be applied to children with thoughtful pediatric adaptation, Pascal Amedro, MD, pediatric cardiologist and researcher from Children’s National Hospital, told the audience at the 2025 World Congress of Pediatric Cardiology and Cardiac Surgery. Often, pediatric cardiac rehabilitation is reduced to exercise only, which is why previous trials have been unsuccessful, he added. When designed to incorporate developmental, psychosocial, cognitive and educational components, research shows these programs are very effective for children with a multitude of chronic illnesses.

What it means

Dr. Amedro presented evidence for the success of a multi-faceted pediatric cardiac rehabilitation program that is offered in a hybrid format: a mix of in-person training and virtual support. “Hybrid programs improve fitness, health-related quality of life and mental health,” he said. “Pediatric cardiac rehabilitation can be feasible, scalable and effective.”

Even better, the research shows that programs like Dr. Amedro’s QUALIREHAB are effective for more children, adolescents and teens than just those who are recovering from a heart condition. These programs make a big difference in physical, emotional and physical health for children with many different chronic diseases.

Why it matters

Dr. Amedro and pediatric colleagues noted that treatment advances over the last 20 years in pediatric medicine mean that more children are living long after treatment for a chronic condition. Instead of the sole goal being to survive these illnesses, researchers are focused on improving long term quality of life. Successful cardiac rehabilitation will help pediatric patients recover and get stronger physically and mentally.

Children’s National leads the way

Children’s National is shifting conventional thinking away from short-term survival and toward a focus on long-term quality of life. In 2025, the hospital began to publish first-of-its-kind data on long term outcomes after cardiac surgery, focused on helping parents and providers get a better idea of what life will be like for children up to 20 years after surgery.

Additionally, Dr. Amedro and Jared Hershensen, MD, plan to launch this evidence-based, three-pronged hybrid approach, QUALIREHAB,, as a clinical offering for children with chronic diseases, including congenital heart disease and cancers.

Anatomically accurate, illustrated image of atrioventricular septal defect repair

‘Delicate’ and thoughtful approach to AVSD repair shows promise in 5-year review

Anatomically accurate, illustrated image of atrioventricular septal defect repair

Anatomically accurate, illustrated images like this one enhance the article’s explanation of specific AVSD techniques that improve outcomes.

A five-year retrospective study of 63 complete atrioventricular septal defect (AVSD) repairs that applied a patience-filled, consistent and refined approach showed low operative mortality, reduced postoperative length of stay and low rates of readmission or reoperation at Children’s National Hospital. The approach, outlined by cardiac surgeon Aybala Tongut, MD and illustrated by medical illustrator Sofia Hanabergh, shows the artistry and technical expertise required for each patient’s unique anatomy.

Dr. Tongut writes, “Each repair is a quiet dialogue with the heart. Our role is to listen with our hands.”

What it means

“Despite the wealth of knowledge in cardiac surgery, reliable technique guidance for AVSD repair especially one that addresses tactile judgment and intraoperative variability — remains surprisingly scarce,” says Dr. Tongut in the article’s introduction. This manuscript aims to provide more detailed outlines and images that will allow other surgeons in the field to replicate the approach that applies through “delicate traction and thoughtful positioning.”

The procedure is a two-patch repair strategy emphasizing tactile feedback, valve-centric technique and “surgical humility.”

Since 2020, Children’s National cardiac surgeons performed 63 two-patch repairs. Operative mortality was 1.59%. Median postoperative length of stay among discharged patients was 10 days. Readmissions occurred in 12.7%, and reoperations in 6.3% of patients.

These outcomes show remarkable consistency for a procedure that is known for its inherently variable nature.

Children’s National leads the way

Cardiac surgeons at Children’s National are leaders in the field and constantly refining new approaches to improve outcomes for children with congenital heart disease. In addition to creating new approaches or perfecting existing ones, the team aims to disseminate evidence-based techniques as widely as possible so that every child with AVSD has the best possible chance to not only survive their congenital heart defect, but also potentially avoid additional procedures for as long as possible.

For AVSD, physicians and families should consider both short-term outcomes, as reflected in Dr. Tongut’s manuscript, but also be aware of the long-term outcomes for these repairs. Children’s National is one of the only children’s hospitals in the U.S. to publish long-term outcomes for some of the most common cardiovascular surgeries performed at the institution.

Read the article, A Surgeon’s Reflection on the Refined Two-Patch Technique for Complete Atrioventricular Septal Defect Repair, in the journal Operative Techniques in Thoracic and Cardiovascular Surgery.

Pascal Amedro, MD, PhD

Pascal Amedro, MD, PhD, named as inaugural Dunn Family Professor of Cardiac Research

Pascal Amedro, MD, PhD

Dr. Amedro joins a distinguished group of Children’s National physicians and scientists who hold an endowed chair.

Children’s National Hospital named Pascal Amedro, MD, PhD, as the inaugural Dunn Family Professor of Cardiac Research.

Dr. Amedro began his role as a senior pediatric cardiologist and researcher in Children’s National Heart and Lung Center and as professor of pediatrics at George Washington University School of Medicine and Health Sciences in September 2025. He will focus on advancing care and research to improve rehabilitation and lifelong health for children and young adults with congenital heart disease and other chronic conditions.

The big picture

Dr. Amedro joins a distinguished group of Children’s National physicians and scientists who hold an endowed chair. Children’s National is grateful to generous donors who have altogether funded 51 professorships.

Professorships support groundbreaking work on behalf of children and their families. They foster new discoveries and innovations in pediatric medicine. These appointments carry prestige and honor that reflects both the recipient’s achievements and the donor’s commitment to advancing and sustaining knowledge.

Why it matters

Children with congenital heart disease and those with cardiovascular risks linked to chronic conditions are living longer than ever thanks to medical advances, but many still struggle with physical and emotional challenges that follow treatment.

Dr. Amedro is an internationally recognized physician-scientist with a long history of advancing pediatric cardiac care and research. At Children’s National, he plans to introduce QUALIREHAB, a research-based cardiac rehabilitation program he developed and validated in Europe. The 12-week hybrid model combines hospital sessions with guided home exercise, patient education and psychosocial support. Designed to help patients stay active and confident, it has been shown to improve aerobic fitness, patient autonomy, cardiovascular health, mental well-being and overall quality of life.

Previously, Dr. Amedro was a pediatric cardiologist at Bordeaux University Hospital and professor of pediatrics at University of Bordeaux. Currently on academic leave from France, he continues to lead the QUALIREHAB research program in Europe. Earlier in his career, he led the Department of Pediatrics at Montpellier University Hospital, where he founded the pediatric clinical research unit and launched several national and international programs in pediatric cardiology.

As the Dunn Family Professor of Cardiac Research, Dr. Amedro will lead efforts to make prevention a cornerstone of cardiac care — turning research in exercise and rehabilitation into real-world programs that help kids live fuller, healthier lives.

“It’s an honor to join Children’s National and become the first Dunn Family Professor of Cardiac Research,” Dr. Amedro says. “By intervening early and helping families integrate these tools at home, we can give patients a better quality of life and hopefully prevent many of the long-term difficulties they face. I’m deeply grateful to the Dunn family for helping us build a future where children have the chance to live not just longer, but better.”

Moving the field forward

The Dunn family, through their vision and generosity, are ensuring that Dr. Amedro and future holders of this professorship will launch bold initiatives to rapidly advance the field of cardiac research, elevate our leadership and improve the lifetimes of children with heart disease.

Laurie and Colin Dunn’s youngest son, Cannon, was born with congenital heart disease in 2020. He underwent open-heart surgery at four days old. Thanks to expert care at Children’s National, he is now thriving at almost 5 years old. Colin and Laurie — together with Colin’s parents, George and Carroll, and his sister Catie and her husband Jerry — have since given back to advance heart research and support other families. Their most recent $2.5 million gift established the Dunn Family Professorship in Cardiac Research and helped launch a nurse-led research initiative aiming to transform cardiac intensive care unit care to reduce stress for infants and parents and enhance coping.

“We’re forever grateful to the surgeons and care team at Children’s National who saved Cannon’s life,” says George Dunn. “This gift is deeply personal for our family, and we are honored to give back by supporting research that will improve care and outcomes for future generations.”

baby in the NICU

Understanding infant stress in intensive care is critical to patient long-term wellbeing

baby in the NICU

A comprehensive study of available peer-reviewed research found several common categories of stressors for all intensive care environments, specifically based on data from the NICU and PICU.

Critically ill infants who must spend their early days after birth in an intensive care environment such as neonatal intensive care unit (NICU), pediatric intensive care unit (PICU) or cardiac intensive care unit (CICU) face a multitude of overlapping stressors that can impact long-term neurodevelopment and well-being. A comprehensive study of available peer-reviewed research found several common categories of stressors for all intensive care environments, specifically based on data from the NICU and PICU. However, the nurse-researchers did not find any studies looking at the additional challenges faced by infants with congenital heart disease who begin their lives in the CICU.

 The study, conducted by cardiac intensive care providers at Children’s National Hospital, including lead author Christine Riley, PhD, RN, APRN, a nurse practitioner in the Cardiac Intensive Care Unit (CICU), reiterates the importance of understanding these stressors, how they impact already fragile newborns and how best to mitigate them and give every infant their best chance to thrive during and after an intensive care unit stay.

Why it matters

The findings, that infants in intensive care face a multitude of overlapping stressors caused by their environment, routine care and painful procedures, show that these vulnerable patients experience a significant cumulative stress burden. As the authors note, these stressful encounters have profound short- and long-term physiological and neurodevelopmental impacts, highlighting the importance of finding these sources of stress and taking steps to reduce them wherever possible. They write that efforts to do so are, “fundamental to improving patient care and optimizing recovery in this vulnerable population.”

The review also revealed a missed opportunity in the research to date — the specific experiences of infants with congenital heart disease in the CICU. The unique anatomy of and different standards of care required for babies born with heart disease likely create additional stress factors influencing both short- and long-term growth and development.

Children’s National leads the way

Dr. Riley and colleagues point out that, “studies to date overwhelmingly focus on preterm infants in neonatal intensive care settings, with limited research addressing the stressful experiences of infants with congenital heart disease, highlighting a crucial area for future investigation.”

An innovative nurse-led clinical research program in the CICU at Children’s National brings bedside care providers and families together in the unit for collaborations that will focus on identifying those CICU-specific stressors and create efforts to improve the neurodevelopment and long-term quality of life for infants who start their lives there.

The program’s research portfolio seeks to define and measure stress and the impact of the stress burden for both families and infants. The program hopes to also develop wellness tools for families that can be administered as part of routine bedside care to help set parents and their babies up for greater resilience in the face of current and future challenges.

Read the study, Understanding Infant Stress in Neonatal and Pediatric Intensive Care: A Scoping Review, in the journal Intensive Care Medicine – Paediatric and Neonatal.

The Children's National Heart Center team

Children’s National co-leads efforts to increase skin-to-skin care for babies with congenital heart disease

The Children's National Heart Center team

The Children’s National Heart Center team led activities designed to encourage skin-to-skin contact between parents and infants in the Cardiac Intensive Care Unit and Heart and Kidney Unit.

Clinicians at Children’s National Hospital and Children’s Hospital Orange County are leading a nationwide event to encourage families to practice more skin-to-skin, or kangaroo, care with newborn infants who have congenital heart disease, including throughout hospitalization.

Thirty-one hospitals across the United States will participate in this congenital heart disease focused “Skin-to-skin-a-thon,” that will include family and clinical care provider activities and education throughout pediatric cardiac intensive care units and step-down units.

The event will celebrate the tremendous benefits that research shows both families and infants gain from physical contact early in life.

Early skin-to-skin care has been shown to:

  • Reduce stress in both baby and the parent
  • Help with baby’s physiologic stability including regulating vital signs like temperature, heart rate, and blood pressure
  • Provide infant pain relief
  • Improve infant digestion and weight gain
  • Support good sleep/wake cycles in babies.
  • Increase oxytocin for mothers, which can help improve milk production/support breastfeeding

Most studies showing these benefits have included pre-term babies or those born after a healthy term. The idea of encouraging family skin-to-skin care in the hospital setting has been widely adopted in neonatal intensive care units but is not done routinely in cardiac intensive care units. One study estimated that only 6% of parents whose babies were hospitalized for congenital heart disease reported any skin-to-skin care during their stay, with most stays averaging 22 days.

“Research shows so many benefits for all infants and their parents — and our congenital heart newborns stand to gain even more from this type of contact, but often receive it far less,” says Sarah Schlatterer, MD, PhD, medical director of Neurocardiac Critical Care at Children’s National. “This awareness effort is designed to help families understand how to do this safely and also empower our bedside care providers to encourage skin-to-skin care as much as they can every day.”

The event overall is inspired and supported by the Cardiac Newborn Neurodevelopmental Network SIG of the Cardiac Neurodevelopmental Outcomes Collaborative, who planted the seed of the idea and assisted with dissemination of information and coordinating between participating hospitals.

3D model for heart valve replacement planning

Living tissue heart valve replaces mechanical mitral valve through partial heart transplant

3D model for heart valve replacement planning

3D model for heart valve replacement planning.

An 11-year-old boy is the first in the world to have an artificial heart valve replaced with a live tissue valve from a donated heart through a partial heart transplant. The procedure took place at Children’s National Hospital in Washington, D.C. The successful surgery, performed by the cardiac surgery team, is also the region’s first partial heart transplant.

“I am honored this family trusted our hospital and our team’s expertise to perform this life-changing first-of-its-kind procedure for Preston,” says Cardiac Surgery Chief Yves d’Udekem, MD, PhD. “I look forward to hearing about all the new activities and adventures he and his family can do once he is completely recovered from surgery.”

Heart valve recipient Preston

“Everyone is ecstatic with his progress so far,” says Lauren Porter, who is the patient’s mother. “We hope having this surgery will give him a lot more freedom to do the things he loves in his life, and we hope that by sharing our story we are helping to make procedures like this more available to kids who need them in the future.”

Artificial heart valves are the standard of care for a failing valve in a child born with congenital heart disease. But Dr. d’Udekem says they are exceptionally difficult in children. First, a traditional artificial tissue valve lasts only about a decade, so children like Preston who have their first valve inserted before age 2 will inevitably face at least two to three additional open-heart surgeries before age 40. Additionally, just like adults, an artificial mechanical heart valve requires the patient to take blood thinners and major precautions against injury for their entire lives. Research has also shown that the placement of an artificial heart valve causes the heart to change shape over time, impacting heart function later in life and leading to a shortened life span.

Replacing this valve with a living transplanted valve will give Preston freedom from a lifetime of blood-thinning medication. Research also shows these live tissue implants should grow along with him, greatly decreasing the likelihood of future open-heart surgeries.

“Everyone is ecstatic with his progress so far,” says Lauren Porter, who is the patient’s mother. “We hope having this surgery will give him a lot more freedom to do the things he loves in his life, and we hope that by sharing our story we are helping to make procedures like this more available to kids who need them in the future.”

Children’s National is the first hospital to remove a child’s previously implanted artificial valve and replace it with a live working valve from a donated heart through a relatively new procedure called a partial heart transplant. The Children’s National partial heart transplant replaced the heart’s mitral valve, which is the valve between the left upper chamber (left atrium) and the left lower chamber (left ventricle) of the heart. In general, partial heart transplants are rare. Prior to this surgery, four U.S. hospitals have used partial heart transplants to replace a failing, living heart valve with a valve from a donor heart, but no organization to date has ever replaced a prosthetic valve with a real one.

“Making this procedure an option for certain children who need a heart valve replacement is critical to having patients live their best lives and to providing hope to their family as they grow into adolescence and adulthood,” says Wayne J. Franklin, MD, senior vice president of the Children’s National Heart Center and a congenital cardiology specialist. “I am proud of our team that conducts such important research to innovate better clinical solutions for all of our patients with congenital heart disease.”

Live tissue partial heart transplants also offer an additional benefit. Donated hearts that do not qualify for use in a total heart transplant may have healthy components, like valves, that can be used for patients who don’t require total replacement. Candidates and potential donors are listed in a registry and matched according to biological factors including blood type, similar to the process for determining full heart transplant candidates.

Dr. Wayne Franklin and patient

Qualities of successful pediatric and congenital cardiovascular programs: Cardiology 2025

Dr. Wayne Franklin and patient

Dr. Franklin’s talk offered his observations of how the administrative backbone behind clinical care supports a thriving center for infants and children with congenital heart disease and their families.

Wayne Franklin, MD, FACC, senior vice president of Children’s National Heart Center, joined a panel discussion at Cardiology 2025: The 28th Annual Update on Pediatric and Congenital Heart Disease. The panel, Healthcare Administration in Pediatric and Congenital Cardiovascular Disease: Sharing Challenges and Creating Solutions, sought to identify the traits that successful U.S. healthcare programs, and especially pediatric cardiovascular programs, have in common.

Dr. Franklin’s talk, “Structuring Administration for Pediatric & Congenital Cardiovascular Care,” offered his observations of how the administrative backbone behind clinical care supports a thriving center for infants and children with congenital heart disease and their families.

The big picture

Dr. Franklin noted that the best programs are finding successful combinations of the right ingredients to make the “secret sauce” — focus on high quality care being delivered in ways that are financially sustainable. More than ever, this is hard to accomplish.

Today’s pediatric programs are often organized in an academic model where clinicians are employed by a university or medical school, typically within a Department of Pediatrics, with pediatric subspecialties all falling together under that department. While the academic model has been successful up to this point, there may be valuable lessons to learn and opportunities for further success by looking at outcomes from other models in the broader adult healthcare sector.

Key takeaways

Dr. Franklin offered several examples of key models for pediatric heart centers to consider. They include:

  • A multi-disciplinary, “service-line centered” structure: All doctors, nurses, advanced practice providers and support staff aligned together under a “center” or “institute” model, similar to the Cleveland Clinic’s Institutes of Excellence.
  • A blended, “privademic” structure for clinicians, where they are direct employees of a hospital, but not of a larger university or healthcare system.
  • Clinician leadership and engagement in business administration structure and function, to make sure that patients remain front and center in business decisions.
  • Dedicated quality and safety teams that are driven by data and outcomes, foster frequent and early communication and ensure care providers actively engage with these efforts.
  • A model that supports innovations in care and investments in research to continue advancing best practices for patients and families.
  • A system for education and training to make sure the next generation can effectively carry on the established culture of excellence.

What matters most

No matter the structure, the most important and common theme among successful health systems, hospitals and even specific heart programs, is steadfast, organization-wide dedication to decision making driven by what is best for patients. This approach should drive a focus on early detection and/or prevention, and lead to positive outcomes, which ultimately brings financial sustainability.

See more about Children’s National at this year’s meeting: Cardiology 2025: 28th Annual Update on Pediatric and Congenital Cardiovascular Disease.

illustration of tiny pacemaker

Novel pediatric pacemaker shows safety, effectiveness for fragile infants in multi-center study

A pacemaker modified in a novel way to work better for the smallest children, including newborns, is safe and effective to stabilize heart rhythms for at least two years, according to a study published in Circulation: Arrhythmia and Electrophysiology, a journal of the American Heart Association.

The Kim family, whose daughter received this device, was featured on NBC Nightly News in May 2024.

What it means

The study includes the findings from 29 infants who received the novel pediatric pacemaker, which is no bigger than a AAA battery, at multiple institutions in the United States. A majority of them (79%) were born premature, weighing less than five pounds (2.3 kg).

The devices remain stable, with effective pacing, normal electrical parameters and battery longevity aligned with projections for up to two years. This design and application provides a viable alternative to standard-size generators and addresses a vital unmet need for these small patients. In fact, though the study includes data from the first 29 cases, the number of children who have received these devices across the United States today has doubled to nearly 60.

The specially modified pediatric-sized implantable pacemaker includes a Medtronic Micra sub-assembly that connects to an epicardial lead. While this makes the leadless pacemaker into one that uses leads, the resulting device is significantly smaller than any commercially available pacemaker previously on the market in the U.S.

illustration of tiny pacemaker

The novel pediatric implantable pulse generator is about a quarter of the size of a traditional pacemaker.

Why it matters

“The need for an urgent permanent pacemaker in newborns is quite rare, but when needed, it is often an emergency,” said lead author Charles Berul, MD, a cardiologist and electrophysiologist at Children’s National Hospital in a press release from the American Heart Association. “Babies who were very small often cannot get a permanent pacemaker and must undergo multiple temporary pacing wires or other techniques in the hopes of getting them big enough to undergo a standard pacemaker placement.”

Dr. Berul also notes that a smaller pacemaker may also help frail elderly patients and be a better choice for some children and adults.

What’s next: Better delivery

Innovating smaller devices is a good start. However, when a newborn or young child needs any pacemaker or defibrillator, they face open chest surgery. Their arteries and veins are just too small for even the smallest size transvenous pacemaker catheter.

Dr. Berul and engineers in the Sheikh Zayed Institute for Pediatric Surgical Innovation are testing a first-of-its-kind minimally invasive pericardial access tool. This tool allows for pacing and defibrillation therapy that can be delivered through a single small port inserted through the skin.

Read the study, Multicenter Results of a Novel Pediatric Pacemaker in Neonates and Infants, in Circulation: Arrhythmia and Electrophysiology, a journal of the American Heart Association.

Drs. d'Udekem and Franklin at the 28th Annual Update on Pediatric and Congenital Cardiovascular Disease

Heart Center experts contribute to Annual Update on Pediatric and Congenital Cardiovascular Disease

Drs. d'Udekem and Franklin at the 28th Annual Update on Pediatric and Congenital Cardiovascular Disease

Drs. d’Udekem and Franklin at the 28th Annual Update on Pediatric and Congenital Cardiovascular Disease.

The 28th Annual Update on Pediatric and Congenital Cardiovascular Disease took place from February 19-23, 2025, at the Disney Yacht & Beach Club Resort in Lake Buena Vista, Florida. The conference, themed “Hope, Heal, Learn,” emphasized critical advancements and practices in pediatric cardiovascular care.  Children’s National Heart Center experts presented their latest research findings, insights and innovations during the conference.

Children’s National speakers and topics

Wayne J. Franklin, MD

  • Speaker: Structuring Administration for Pediatric & Congenital Cardiovascular Care
  • Moderator: It Doesn’t Always Turn Out the Way We Want: Disappointments and Errors in Pediatric & Congenital Cardiovascular Disease
  • Panelist: Pediatric and Congenital Cardiovascular Healthcare Administration II: A Conversation Amongst Leaders

Yves d’Udekem, MD, PhD

  • Speaker: Does the Nature and Size of the Fontan Pathway Make a Difference?
  • Speaker: 3rd Annual Thomas L. Spray Surgery Lecture

Awards and recognitions

  • 3rd Annual Thomas L. Spray Surgery Lecture in Pediatric and Congenital Cardiovascular Surgery Selected Speaker: And We Thought That the Fontan Was the Last Operation, Yves d’Udekem, MD, PhD
  • Top 8 Nursing Abstracts: Early Outcomes of Lost to Follow Up Outreach in Pediatric Congenital Heart Disease Survivors, Arielle Scarpati, NP

Poster and abstract presentations

  • An Unusual Case of Partial Anomalous Pulmonary Venous Connection with Dual Connection to the Superior Vena Cava and Left Atrium, David Finkelstein, MD, MS
  • Early Outcomes of Lost to Follow Up Outreach in Pediatric Congenital Heart Disease Survivors, Arielle Scarpati, NP
  • From Competency to Care: Advancing Breastfeeding Support Through Nursing Education, Jennifer Rowe, NP, and Sofia Mendieta, MD
  • Pseudoaneurysm of Mitral-Aortic Intervalvular Fibrosa with Left Ventricular Dilation of Arrhythmias, David Finkelstein, MD

Podcast: Beating strong: The lifelong impact of pediatric cardiology

Read more
American Heart Association Scientific Sessions logo

Children’s National Hospital at American Heart Association Scientific Sessions 2024

American Heart Association Scientific Sessions logoExperts from Children’s National Heart Center presented and shared their latest research findings at this year’s American Heart Association (AHA) Scientific Sessions, held in Chicago, Illinois, in mid-November.

The annual AHA Scientific Sessions are attended by scientists, clinicians, researchers and other health care professionals from around the globe who have an interest in cardiovascular disease. Children’s National Hospital experts highlighted work focused on caring for the full spectrum of people who live with congenital heart disease — from tiny neonates through adulthood.

Presentations

  • Transvenous cardiac re-synchronization: When is it effective in CHD? Charles Berul, M.D.
  • Leveling the Playing Field: Creating Equity within Pediatric Cardiology Leadership and Salary, Wayne Franklin, M.D.
  • Debate: Patients with small coronary artery aneurysms SHOULD be discharged – US experience, Ashraf Harahsheh, M.D.
  • Science of Engagement: Inclusion of Adults with Congenital Heart Disease Living with Neurodevelopmental Disability in PCOR, Anitha John, M.D., Ph.D.
  • 100 Years of AHA Leading Global Health, Craig Sable, M.D.
  • Best Oral Abstract: Safety of Discontinuing Secondary Antibiotic Prophylaxis After Echocardiographic Normalization in Early Rheumatic Heart Disease, GOAL-Post Study, Craig Sable, M.D., co-author
  • Su2032│CMR can discriminate need for biopsy and rejection therapy in children post heart transplant, Ravi Vamsee Vegulla, M.D.

Posters and poster presentations

  • Minimally-Invasive Intrapericardial Injections under Direct Visualization via Thoracic Cavity Access in Infant and Pediatric-sized Pre-clinical Model, Charles Berul, M.D., Ryan O’Hara, Ph.D.
  • Early total cfDNA, but not donor fraction, predicts late events after heart transplantation, Shriprasad Deshpande, M.D.
  • Impact of Angiotensin Receptor Neprilysin Inhibitor on Chronic Heart Failure with Reduced Ejection, Shriprasad Deshpande, M.D.
  • Fraction in Adult Congenital Heart Disease Patients: A Systematic Review and Meta-analysis, Shriprasad Deshpande, M.D.
  • Trough Level Prediction of Major Adverse Transplant Events: A Report from the TEAMMATE Trial, Shriprasad Deshpande, M.D.
  • Thrombocytosis is Prevalent and Associated with Greater Inflammation and Coronary Artery Involvement in Both Kawasaki Disease and Multisystem Inflammatory Syndrome in Children Associated with COVID-19, Ashraf Harahsheh, M.D.
  • Mesenchymal Stromal Cell Delivery through Cardiopulmonary Bypass in Pediatric Cardiac Surgery – MeDCaP Phase I Trial, Nobuyuki Ishibashi, M.D., Shriprasad Deshpande, M.D., et. al.
  • Social Determinants of Health: Impact on Mortality and Care Status for Adults with CHD, Jamie Jackson, Ph.D.; Anitha John, M.D., Ph.D., co-author
  • Loss to Follow-Up Among Adults with Congenital Heart Defects: A Report from Congenital Heart Disease Project to Understand Lifelong Survivor Experience (CHD PULSE), Anitha John, M.D., Ph.D., co-author
  • The Burden of Adult Congenital Heart Disease in the United States, Vasupradha Suresh Kumar, M.D.
  • Determining the Physiologic Effect of the Cavopulmonary Connection on Caval Flows Using 4D Flow MRI , Vasupradha Suresh Kumar, M.D.
  • Shape Variations in Right Ventricular 3D Geometry are associated with adverse outcomes in Hypoplastic Left Heart Syndrome Patients: A Fontan Outcomes Registry using CMR Examination (FORCE) Study, Yue-Hin Loke, M.D.
  • Matrix Metalloproteinases and Tissue Inhibitors of Metalloproteinases as Biomarkers in Duchenne Muscular Dystrophy Cardiomyopathy, Christopher Spurney, M.D., co-author
  • Duchenne Muscular Dystrophy Boys Have Diastolic Dysfunction Based on Cardiac Magnetic Resonance, Christopher Spurney, M.D., co-author

Read more about these presentations and posters on the AHA’s meeting website: Programming – Scientific Sessions 2024.

Mary Donofrio, M.D., medical director of Prenatal Cardiology at Children’s National Hospital

Fetal detection, risk stratified care algorithms give infants with CHD their best chance to thrive

Mary Donofrio, M.D., medical director of Prenatal Cardiology at Children’s National Hospital

Mary Donofrio, MD, medical director of Prenatal Cardiology at Children’s National, and other dedicated pediatric cardiologists working in this evolving specialty have spent most of the last two decades defining the field.

Congenital heart disease (CHD) can be detected in utero with precision and accuracy. With advanced technology, identification of a problem happens earlier than ever, including identifying details that predict whether a baby may be dangerously sick at birth. This gives fetal and pediatric cardiologists time to make plans for delivery and specialized care immediately after birth. These critical first moments can be the key to survival for infants with the most complicated defects.

Mary Donofrio, MD, medical director of Prenatal Cardiology at Children’s National Hospital, and other dedicated pediatric cardiologists working in this evolving specialty have spent most of the last two decades defining the field and demonstrating the importance of making sure every child with a congenital heart defect is diagnosed as early as possible to give them the best chance for a healthy life.

Children’s National leads the way

Children’s National performs more than 4,000 fetal ultrasounds each year to detect and manage the unborn child with congenital heart disease, making it one of the most experienced centers in the United States at finding these conditions and planning for their care.

For more than 20 years, every fetus diagnosed with congenital heart disease at Children’s National following an obstetrician referral has their anticipated level of delivery room care assigned by a fetal cardiologist. Protocols were created at Children’s National and validated to establish specialized delivery room management for each patient. The management plan includes specifics about the time and place of delivery and which delivery room staff members are required for stabilization and care after birth based on the severity of the condition.

The outcomes from this approach were published in a landmark 2013 study showing the impact on improving outcomes for infants with the most serious forms of congenital heart disease. Since then, these protocols have become part of more extensive fetal cardiology care guidelines that are in use both at Children’s National and around the world.

“The guidelines we wrote include recommendations about who should get a fetal echo, how to do a fetal echo, how to manage babies in utero including when a fetal intervention might be necessary, and finally how to decide the level of cardiology care that should be present in the delivery room,” according to Donofrio, who served as lead author.

In Washington, D.C., approximately 60 to 75% of congenital heart defects are diagnosed before a baby is born, giving doctors and other care providers critical days, weeks and months to plan how best to protect the fragile infant during their transition into the world from the safe haven of their mother’s body.

What’s next

Fetal imaging guidelines tell obstetricians which expecting mothers should be referred for a fetal ultrasound given a higher level of risk for CHD over the population risk. However, most women do not have any risk factors that will trigger additional testing beyond obstetrical screening. Also, many families even if referred are far from a center that is qualified to perform a fetal echocardiogram to detect these conditions.

Research at Children’s National, led by Anita Krishan, MD, and Dr. Donofrio in collaboration with the Fetal Heart Society, an international research collaborative, showed that in the U.S., factors such as socio-economic status, ethnicity and geography are important barriers to detection of severe congenital heart diseases such as hypoplastic left heart syndrome and transposition of the great arteries.

In a follow-up study by Jennifer Klein, MD, and Dr. Krishnan, distance was not the only barrier to detecting CHD, however. Geo-mapping technology using zip codes allowed the team at Children’s National to pinpoint “hot spots” where detection is decreased, even in places where care should be available. The Heart Center team is hoping to work with providers in these neighborhoods to improve access to care and help educate local clinic providers about how to image and when to refer for further testing.

Donofrio and colleagues are also working to develop ways to improve the diagnosis of fetal heart disease in places that are far from the Heart Center. This includes exploring more portable diagnostic tools and applying telehealth strategies to connect fetal heart experts with local care providers to make an action plan, before a baby arrives potentially in distress. In addition, a phone-based application is under development to help sonographers to identify abnormal images in real time during routine scans in remote locations. Improved detection rates have also opened the doors to powerful new studies investigating how maternal health and stress impacts brain development in fetuses with congenital heart disease. Ongoing research looks at ways to better support expecting mothers, with the goal of helping moms cope with stress during pregnancy so her baby has the best chance possible to be born healthy and strong.

Donofrio says she won’t stop until in utero detection of congenital heart disease is 100%. “Where you live, your neighborhood, your life experience or how far you live from the Heart Center, should not decrease our ability to do everything possible to care for every baby and achieve the best outcome possible,” she says.

Seven key takeaways from the early development and implementation of the NeuroCardiac Critical Care Program.

Sharing development of the NeuroCardiac Critical Care Program through Congenital Heart Academy

Seven key takeaways from the early development and implementation of the NeuroCardiac Critical Care Program.

Jones presented seven key takeaways from the early development and implementation of the NeuroCardiac Critical Care Program.

“Neurodevelopmental care is not a decision on a day-to-day basis. It is a series of micro-decisions embedded in our practice every single day,” says Melissa Jones, MSN, APRN, CPNP-AC, director of the NeuroCardiac Critical Care Program at Children’s National Hospital.

Several years ago, Jones and colleagues in the Cardiac Intensive Care Unit (CICU) at Children’s National launched the program, which involved team education, implementation of evidence-based best practices, research and quality improvement efforts with the goal of optimizing brain neurodevelopment for patients in cardiac intensive care.

More than 1,000 people around the world registered for a recent virtual educational webinar hosted by the Congenital Heart Academy focused on the topics of neuroprotection for children with congenital heart disease. During the webinar the team outlined the process and lessons learned from developing this important, novel program.

What it is

The NeuroCardiac Critical Care Program at Children’s National is an integrated, multidisciplinary group of clinicians focused on eliminating secondary brain injury, optimizing brain development and promoting healthy family bonding in the CICU.

The team prioritizes several key areas, including:

  • Weekly neurodevelopmental rounds
  • Environmental changes
  • Pain and sedation management
  • Parent and caregiver engagement
  • Neuromonitoring guidelines

Jones presented the multidisciplinary team-oriented approach that led to the launch of the program, which continues to evolve and grow in the CICU today. She also offered a series of lessons learned, such as:

  • Even the patients who are the most fragile can receive developmentally supportive care.
  • Elevating and disseminating the expertise of the team is key.
  • Continuous staff educations and buy-in is essential.
  • Working with existing resources (people and material) is important.
  • Early and small wins can build traction for the team.
  • Taking care of parents is developmental care.
  • Culture change takes time, patience and persistence.

Children’s National leads the way

Children’s National is a national leader in the study of neurodevelopment across the lifespan of children born with congenital heart disease. This includes cutting edge work to understand the fetal brain, earlier diagnosis and intervention for heart disease and how congenital heart anomalies affect growth and development in utero, studies of neuroprotection strategies for use in the operating room, neurologically supportive approaches in cardiac critical care, and neuropsychological support systems as these children grow up and into adulthood.

Cardiac critical care and telehealth experts at Children’s National have been longstanding contributors to the knowledge sharing efforts of the Congenital Heart Academy from its beginning, including leading a precursor international, multi-disciplinary knowledge sharing telehealth series for critical care strategies started during the COVID-19 pandemic.

Watch the webinar: Development of the NeuroCardiac Critical Care Program

winners of the pediatric medical device competition

Winners announced in pediatric medical device competition focused on cardiology

winners of the pediatric medical device competitionSix medical technology innovators focused on pediatric cardiology were selected to receive grants of $50,000 each in the “Make Your Medical Device Pitch for Kids!TM” competition in Toronto. The funds will help awardees bring their devices to the market and improve care for children with heart conditions.

The awardees, selected from a highly competitive field of ten finalists, are:

  • Bloom Standard, Minneapolis – Autonomous, hands-free ultrasound
  • Compremium AG, Bern, Switzerland – Noninvasive central venous pressure estimation for pediatric patients
  • Massachusetts Institute of Technology, Cambridge, Mass. – Polymeric auxetic stent to treat pediatric aortic coarctation
  • OxiWear, Arlington, Va. – Home measurement of oxygen levels in pediatric congenital heart disease
  • PyrAmes Inc., Cupertino, Calif. – Improved, wearable, noninvasive pediatric blood pressure monitor
  • Sibel Health, Chicago – Hospital-to-home monitoring for pediatric heart conditions

The competition is presented by the Alliance for Pediatric Device Innovation (APDI), a nonprofit consortium led by Children’s National Hospital and funded through the Food and Drug Administration (FDA), and Additional Ventures, a nonprofit focused on accelerating research progress and improving clinical care for individuals born with single ventricle heart defects. Along with grant funding, awardees gain access to support services and technical expertise provided by APDI and Additional Ventures in areas that include engineering, regulatory, reimbursement, clinical trials study design and data science services.

According to the Centers for Disease Control and Prevention, about 40,000 children are born annually with a congenital heart defect. Children with heart conditions need medical devices tailored to their specific physiological needs. There is a significant unmet need for pediatric devices designed to monitor and treat young patients effectively in cardiology, interventional cardiology, cardiac surgery and electrophysiology. This competitive grant program is designed to identify and support the development and commercialization of devices addressing these needs.

“Congratulations to our awardees, whose innovative technologies show great promise in advancing care for pediatric heart patients,” said Kolaleh Eskandanian, Ph.D., M.B.A., vice president and chief innovation officer at Children’s National and APDI program director and principal investigator. “We are thrilled to welcome this new cohort into our pediatric device accelerator, where they will have the opportunity to collaborate with clinician-scientists at Children’s National and connect to Additional Ventures’ network. Along with these collaborations, the awardees will benefit from a full range of APDI wraparound services designed to support the development of devices specifically for pediatric patients, helping them navigate the complex path to market.”

The competition was held in conjunction with the 12th Annual Symposium on Pediatric Device Innovation, presented by Children’s National and co-located with The MedTech Conference powered by AdvaMed.  Focused on transforming pediatric care with exclusive innovations for children, this year’s symposium featured panel discussions and keynote presentations with leading experts in pediatrics and medical technology to exchange information and ideas on critical issues in pediatric device development and pediatric healthcare innovation gaps.

“Additional Ventures is thrilled to support this new class of innovators whose products will make a profound impact in the management and care of pediatric heart patients,” said Additional Ventures CEO Kristie Keller, Ph.D. “We welcome them to our growing community of inventors, researchers and clinicians, and we look forward to working together with our awarded teams and ADPI to bring these products to market. We hope that this competition both inspires and activates the community and brings much-needed new entrants and new ideas to pediatric-first device development.”

APDI is one of five nonprofit consortia in the FDA’s Pediatric Device Consortia grant program. It receives funding to provide a platform of services, expertise and grants that support pediatric innovators in bringing medical devices to the market that specifically address the unmet needs of children. Led by Children’s National, APDI partners include Johns Hopkins University, CIMIT at Mass General Brigham, Tufts Medical Center, MedStar Health Research Institute, MedTech Color and OrthoPediatrics Corp.

Illustration of VAD and heart

Ventricular Assist Device (VAD) successfully used as bridge to congenital heart surgery

Illustration of VAD and heart

The team supported R’s heart using a VAD and an innovative implantation technique to increase the likelihood he would tolerate the device well.

A case study published in the Journal of Thoracic and Cardiovascular Surgery Techniques demonstrates a proof of concept that temporary use of a VAD to support a single ventricle heart may give that heart time to grow stronger and allow for corrective and lifesaving procedures under cardiopulmonary bypass instead of heart transplant.

What it means

The cardiac surgery team at Children’s National Hospital was able to offer a young boy’s family a lifesaving surgical option, after they were told elsewhere that their only choice was palliative care.

Baby R was born with a series of complex congenital heart conditions: Heterotaxy syndrome, unbalanced atrioventricular septal defect (AVSD), severe atrioventricular valve regurgitation, reduced ventricular function and obstructed total anomalous pulmonary venous drainage (TAPVD).

That combination of defects left his family facing an unthinkable statistic — there was an up to 90% possibility that R would die before reaching his first birthday.

A set of early interventions, including an initial attempt at a single ventricular correction called a bi-directional cavo-pulmonary shunt (BCPS) failed. His already weak heart was left even weaker than before. He continued to decline.

“We don’t ever want to say, ‘There is nothing we can do for your child,’” says Yves d’Udekem, M.D., Ph.D., chief of cardiac surgery at Children’s National. “Instead, we make the impossible, possible.”

The team decided to support R’s heart using a ventricular assist device (VAD) and an innovative technique during implantation of the VAD to increase the likelihood that he would tolerate the device well. By relieving some of the heart’s workload, they hoped that complicating functional issues might improve enough to allow surgeons to operate again and fix some of the structural conditions to optimize blood flow.

Children’s National leads the way

There is literature showing VAD used in this way in adults with heart failure, but until now it had never been successfully applied as a bridge to surgical intervention in a child with a single functioning ventricle. These assist devices are typically used only as a bridge to heart transplant in children.

This is the first documented case where ventricular assist device implantation resulted in gradual improvement in ventricular function, atrioventricular valve regurgitation, and pulmonary vascular resistance.

The improvements culminated in a major milestone: After 8 weeks of VAD support, at 6 months old, R was weaned off the device and had a successful BCPS, the first of several surgical procedures to make blood flow in his heart effective enough to sustain his organs.

When he was 14 months old, he returned for a successful second procedure along the established single ventricle pathway.

What’s next

R is nearly 3 years old and thriving at home, not in the CICU, as he waits to undergo the Fontan procedure — the final structural surgery for his single ventricle heart.

The knowledge and skill of Children’s National Heart Center turned this formerly hopeless situation into a brighter prognosis by repurposing existing technology to save a life.

In their case study conclusion, the team writes, “The observed improvement in ventricular function and AV valve regurgitation following VAD implantation in this patient is proof of the concept that patients with a failing single-ventricle circulation can be bridged to recovery by temporary VAD support. This concept may open new avenues of treatment.”

Read the study: Revalidation to single ventricle pathway with single ventricular assist device: Proof of concept

Team performing cardiac surgery at Children's National

Long-term outcomes are key measure of CHD care quality and safety

Short-term outcomes data may be one benchmark of the quality and safety found in a pediatric cardiac surgery program, but according to the team at Children’s National Hospital, it shouldn’t be the sole factor in how referring physicians and families make decisions about where to seek care.

Instead, physicians and families need more information about what to expect for a child’s entire lifespan. To meet this need, the Division of Cardiac Surgery at Children’s National has launched the Children’s National Cardiac Outcomes Registry (CNCOR), a first-of-its-kind database that captures outcomes from 15-plus years of congenital heart surgical repairs for specific congenital heart conditions.

What it means

Today, most pediatric heart programs publicly share their outcomes based on benchmarks defined by the Society for Thoracic Surgeons (STS). For cardiac surgery, the data points are focused on the short-term outcomes for various procedures, ranging from 30 days to one year after surgery.

However, as surgical procedures have been refined and multi-disciplinary teams continually improve their knowledge of how to treat children with these congenital heart defects, more children with these conditions are living far beyond those time frames. One metric, operative mortality for “index cases” defined by the STS (excluding VAD and ECMO), measures how many children having heart surgery with the cardiopulmonary bypass die during surgery or within the 30 days after surgery.

Recently at Children’s National, the Cardiac Surgery, Cardiac Intensive Care Unit, Cardiology and Cardiac Anesthesia teams had a remarkable year with zero operative mortality, or no deaths, for the types of cases included in this benchmark. While it’s impossible to expect zero mortality to continue indefinitely when caring for children with the most severe and complex heart conditions — as is the case at Children’s National — the national average operative mortality for these procedures is closer to 3%.

Yves d’Udekem, M.D., Ph.D., chief of Cardiac Surgery at Children’s National, says that this achievement is not one he expected to “ever see in his lifetime” and is a testament to the teams’ dedication to providing the highest quality care every day. However, he also noted, “Achieving such impressive statistics for short-term measures has never been, is not, and will never be my objective. We also need to look beyond it. What happens to this patient 5, 10 or 15 years down the line? That’s what we want to know.”

Children’s National leads the way

The CNCOR collects long-term data from 20 years of cardiac surgical procedures at Children’s National. This data has allowed Children’s National to create a series of charts that show predicted long-term outcomes for specific congenital heart conditions.

The charts are now available in a new Cardiac Surgery Long-Term Outcomes section on the website, organized by specific types of congenital heart disease, including:

  • Tetralogy of Fallot
  • Aortic arch coarctation
  • Atrioventricular septal defects
  • Transposition of the great arteries

For most conditions, data is available showing long-term mortality as well as re-operation or re-intervention rates for children who underwent these procedures at Children’s National, going as far back as the year 2000. Eventually, the database might expand to include indicators such as exercise capacity and neurological outcomes.

What’s next

The launch of the CNCOR is the start of efforts by the team at Children’s National to provide what Dr. d’Udekem calls “proper” benchmarking based on the whole life of a patient rather than a single event in time.

If more institutions collect and report this data and make it available, patients, families and practitioners who refer to cardiac surgery will have a true lifetime perspective of what a surgical procedure at a specific institution may mean for a child.

Wayne Franklin, M.D., F.A.C.C.

Optimized congenital heart care ‘from twinkle to wrinkle’: Q&A with Wayne Franklin

Wayne J. Franklin, M.D., F.A.C.C., recently joined Children’s National Hospital as senior vice president of the Children’s National Heart Center. In that role, he oversees the full spectrum of heart care services which includes comprehensive care, as he puts it, from twinkle — when a child is barely more than a twinkle in their mother’s eye — to wrinkles — or throughout the lifespan.

During his first week, Dr. Franklin answered questions about his vision for the Children’s National Heart Center and told the team more about his clinical and research priorities.

Q: Why did you choose Children’s National?

A: Children’s National has such a long history of caring for the children and families in the community — over 150 years. This is a hospital taking fantastic care of patients now, but also planning for the future and the future of healthcare specifically. And I wanted to be part of that team. We know health care is ever changing and I want to be ahead of that, really providing the best care possible for today’s patients and about how to plan the ideal care for tomorrow’s patients.

I’m also excited to work with Children’s National President and CEO Michelle Riley-Brown. When I worked with her previously, I found out she’s a fantastic leader. I know she’s already started to do amazing things for Children’s National and the community.

Q: What is your vision for Children’s National Heart Center?

A: My vision for the heart center is to organize, coordinate and optimize all the different aspects of caring for children with heart problems.

It’s a complicated process. There’s intensive care in the hospital, ambulatory care in the clinic, acute care and emergency care. One of my roles is to coalesce all of those facets to provide total care for people from the prenatal period through birth and beyond into the teenage years, adulthood and even parenthood and grandparenthood.

I think we’re well-equipped to do that here at Children’s National.

As part of our commitment to providing the best care for patients and their families, we also plan to rely on our patient-family advisory council and our family-centered care approach. We take patient and family concerns to heart and want to continue bringing that information together with our world-class clinical care. That’s how we’ll be sure to provide great outcomes now and down the road.

Q: How is research a part of your vision for the Heart Center?

A: Research is critical to cardiac disease in children, especially in Washington, D.C. I think we’re very fortunate because people here at Children’s National are doing groundbreaking research and we work close to truly great scientific organizations like the George Washington University and the National Institutes of Health. Some of our heart center faculty actually work at the NIH too.

The top centers in the country, including Children’s National, are involved with cutting-edge innovation and research alongside clinical care and a big part of my job is to support these efforts to translate this science and help improve health outcomes for our patients.

Q: Why did you choose to work in the field of pediatric cardiology?  

A: While children with heart problems can become very sick, our advances in cardiac surgery, catheter interventions, cardiac intensive care and anesthesia allow us to work together to make them better reasonably quickly. To be able to provide them that care is really rewarding. Our team can really impact their health for a lifetime.

Q: What research are you, personally, interested in?

A: The research that I’m particularly interested in involves the full gamut of cardiac disease, from single ventricle physiology to pulmonary hypertension to fetal cardiology to women with heart disease. Fortunately, here at Children’s National there is a strong research infrastructure and some fantastic physician scientists.

Q: How did your interest in pediatric cardiology evolve into a specialty in adult congenital heart disease?  

A: When these kids grow up, they become adults with heart disease that is caused by their congenital heart lesions. It’s a different type of heart disease than an age-related heart attack, high cholesterol or stroke. I focused on this area many years ago because there are now more adults with congenital heart disease than children.

Currently, there is a need for more adult congenital heart disease specialists and there will continue to be need for even more in the future. I’m fortunate to join one of the best adult congenital heart programs in the country by coming to Children’s National.

Q: How do you spend your free time when you aren’t here at the hospital?

A: I work a lot but when I get time away from work, I love to spend my it with my family and I’m lucky to have a truly spectacular wife. In December, we’ll celebrate our 20th wedding anniversary and it’s been an extraordinary and exciting ride. We have two wonderful kids, both teenagers. Being a father myself has given me a different perspective about taking care of children throughout their lifetimes.

Q: What’s your favorite Washington, D.C., monument?

A: I always have to go back to the Lincoln Memorial. It was the first monument I saw on an 8th grade trip. I still remember the moment when I first walked up there…you see him. Incredible. He is literally larger than life, it’s just breathtaking. I think I’ll always remember that feeling.

Dr. Anitha John addresses symposium attendees

Addressing long-term brain effects of congenital heart disease

Dr. Anitha John addresses symposium attendees

Dr. Anitha John, medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital, presenting on the lifelong effects of congenital heart disease on brain health at a recent symposium.

About 81% of the 40,000 babies born in the United States with congenital heart disease (CHD) are expected to survive to at least age 35, according to the Centers for Disease Control and Prevention. As survival rates have increased in recent decades, clinicians treating CHD patients are seeking to improve outcomes by understanding the long-term health effects and complications that arise for them.

Anitha John, M.D., Ph.D., medical director of the Washington Adult Congenital Heart Program at Children’s National Hospital, presented an overview of what researchers currently know about the lifelong effects of CHD on brain health at a symposium focused on the heart-brain continuum presented by Children’s National Innovation Ventures, CobiCure and JLABS @ Washington, D.C. She also discussed critically needed advancements in monitoring technology to help clinicians better understand and address how CHD affects the brain.

Why it matters

Based on data collected from adults and children with the condition, Dr. John shared that people with CHD face many potential lifelong challenges and risks, which vary based on disease severity:

  • About one-third report a mood disorder, either anxiety or depression
  • 25% higher risk of substandard academic outcomes
  • 50% more likely to require special education services
  • Higher incidence of motor skills impairment
  • Higher lifetime prevalence of ADHD
  • Generally lower educational attainment at adulthood
  • Higher risk of autism spectrum disorders
  • Higher rate of dementia before the age of 65

Why do some people with CHD experience profound, lifelong brain effects? Dr. John notes that clinicians and researchers are seeking those answers, recognizing that they likely involve various factors and accumulating issues that occur over the entire lifespan, from fetal life onward.

Because the heart supplies the brain with oxygen through circulated blood, the diagnostic tool clinicians most want for patients of all ages is a technology that enables noninvasive monitoring of central venous pressure, an indicator of the volume of blood returning to the heart and the pressure within the heart. Currently, the most reliable way to measure this pressure is by an invasive procedure in which a catheter is inserted into the patient’s subclavian or internal jugular vein or by placing a device into the patient’s pulmonary artery. These procedures have limitations and cannot be used for routine surveillance.

What’s next

Dr. John says noninvasive central venous pressure monitoring is important to understanding and addressing what is causing brain injury in CHD patients. She says the challenges in developing this monitoring solution include the need for an individualized approach, a design that accommodates multidisciplinary use, sizing for patients from infants to adulthood, usability for all age groups and avoiding stigma for wearers.

To address this need, the Alliance for Pediatric Device Development – a consortium funded by the Food and Drug Administration and led by Children’s National – is partnering with CobiCure to issue a request for proposals for direct device funding. The goal is to provide funding to innovators who offer solutions to the dire unmet need for pediatric devices that provide noninvasive monitoring of the circulatory system and heart performance. Details will be announced in June 2024.