Cardiology & Heart Surgery

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.

 

two puzzle pieces, one with a heart and one with a brain

$2.1m award will fund studies for adults with CHD and neurodevelopmental disorders

two puzzle pieces, one with a heart and one with a brain

The project will study the best engagement methods on how to include adults who have both congenital heart disease and neurodevelopmental disorders in the Congenital Heart Initiative (CHI), the first global, patient-powered registry for adults with congenital heart disease.

A first-of-its-kind study focused on including adults with congenital heart disease (CHD) and neurodevelopmental disabilities in patient-reported outcome research has been approved for $2.1 million in funding from the Patient-Centered Outcomes Research Institute (PCORI).

The study, Achieving Equity: Inclusion of Adults with Congenital Heart Disease (CHD) Living with Neurodevelopmental Disorders (NDDs) in Patient Centered Outcomes Research, is led by Anitha John, M.D., Ph.D., at Children’s National Hospital, together with partners from a range of academic, scientific and patient advocacy perspectives.

What this means

The project will study the best engagement methods on how to include adults who have both congenital heart disease and neurodevelopmental disorders in the Congenital Heart Initiative (CHI), the first global, patient-powered registry for adults with congenital heart disease. In its current form, individuals with developmental disabilities are often excluded, as they are unable to complete the surveys independently.

Building upon Dr. John’s previous collaborations, the project features a shared leadership model with partners from across the United States.

Leading the study with Dr. John, William Bennett, M.D., (Indiana University) provides expertise in patient engagement research and big data and will serve as dual principal investigator (PI).

The project also utilizes the strengths and long-standing connections with PCORnet®, the National Patient-Centered Clinical Research Network, with Thomas Carton, Ph.D., (Louisiana Public Health Institute/REACHnet) serving as the PCORnet PI, Jamie Jackson, Ph.D., (Nationwide Children’s Hospital/PEDSnet) serving as a scientific PI with psychology expertise, Arwa Saidi, M.B.B.Ch., M.Ed., (University of Florida/OneFlorida) and Emily Ruckdeschel, M.D., (CHOP/PEDSnet) serving as recruiting site PIs.

The Adult Congenital Heart Association (ACHA) continues as part of the leadership team, represented by two parent co-PIs along with the Cardiac Neurodevelopmental Outcomes Collaborative (CNOC), represented by Thomas Miller, D.O., (Maine Medical) and CURA strategies, represented by Scott Leezer.

The study was selected for support through a groundbreaking PCORI funding announcement focused on building an evidence base to support development of measures and approaches that strengthen meaningful engagement in comparative clinical effectiveness research. Much has been learned in recent years about participatory research that seeks to involve the end users of study results, including patients, caregivers, clinicians and others, as partners in the research process. But there has been little systematic study about which engagement techniques are most effective.

Why it matters

Although nearly 2 million adults in the United States are living with a congenital heart defect — more adults than children — it has been historically difficult to gather data on people with these conditions and to identify patient needs, especially in those with neurodevelopmental disabilities. Despite significant investment in cardiac neurodevelopmental programs across North America, CNOC has identified large gaps in current infrastructure to provide a continuum of neurodevelopmental care into adulthood.

Even more challenging is ensuring that the data is representative of the entire population of people living with these conditions. According to a 2024 Scientific Statement from the American Heart Association, “Although not every individual with congenital heart disease will have a developmental delay or disorder, neurodevelopmental deficits rank among the most enduring and impactful complications faced by individuals with complex congenital heart disease.”

Unfortunately, this critical subgroup remains underrepresented even in inclusive efforts such as CHI. Currently to be eligible for the CHI, participants must be able to complete the CHI’s patient-reported outcome tools independently. Individuals with CHD and neurodevelopmental disorders are often ineligible to participate.

The lack of engagement methods to effectively incorporate patients with developmental disabilities presents a major gap in the science of engagement research that hinders a full understanding of the long-term outcomes of all patients with CHD.

What’s next

This work to engage and capture the experiences of the most vulnerable adults with CHD will be an important enhancement to the CHI and will build upon the work of an ongoing sub-study of the CHI that uses PCORnet®, the National Patient-Centered Clinical Research Network, the CHI-RON study (PCORI RD-2020C2-20347).

The award has been approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.

PCORI is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers and clinicians with the evidence-based information needed to make better-informed healthcare decisions.

illustration of diseased liver

Dominant Fontan approach may be associated with increased liver cirrhosis

illustration of diseased liver

The amount of long-term liver cirrhosis in children with single ventricle congenital heart disease who underwent the Fontan procedure may depend on which surgical approach is chosen by the pediatric cardiac surgeon.

The amount of long-term liver cirrhosis in children with single ventricle congenital heart disease who underwent the Fontan procedure may depend on which surgical approach is chosen by the pediatric cardiac surgeon, according to researchers at Children’s National Hospital who presented their findings this week at the American Association of Thoracic Surgery annual meeting. The full manuscript appears in the Journal of Thoracic and Cardiovascular Surgery.

What this means

Senior study author Yves d’Udekem, M.D., Ph.D., chief of Cardiac Surgery at Children’s National, says that the vast majority of Fontan procedures in the United States use an extracardiac conduit approach to redirect blood flow to the lungs. However, a retrospective review of 332 patients who underwent the Fontan at Children’s National showed that children who received the extracardiac Fontan may experience liver cirrhosis at a rate of 30% after 15 years compared to the lateral tunnel approach which showed 15-year liver cirrhosis at a significantly lower rate of 4.4%. The lateral tunnel was a well-established method pioneered in Europe by pediatric cardiac surgeon Marc de Leval in the 1980s. This technique lost traction in the field and people started in the 1990s to perform a variation of the technique called the extracardiac Fontan because it was thought that it would be giving more favorable flows and protect the patients against rhythm issues. Thirty years later, these predictions did not reveal themselves to be true.

“Since the 1990s, the vast majority of Fontan procedures in the United States are performed creating an extracardiac conduit rather than the lateral tunnel,” says Dr. d’Udekem. “But what we see when we follow long-term outcomes of these children is a consequence not reported before.”

Children’s National leads the way

Dr. d’Udekem and the research team, including presenter and first author Eiri Kisamori, M.D., a cardiac surgery fellow at Children’s National, are the first to report these findings based on reviews of 15-year outcome data. These retrospective reviews of long-term outcomes are a critical tool to inform and improve clinical approaches with the goal of optimizing the long-term quality of life for children born with these critical congenital conditions.

What’s next

While more research is needed, the authors hypothesize that the size of the conduit for blood flow may be the culprit for higher levels of liver damage. For children who have already received an extracardiac Fontan, Dr. d’Udekem says that widening their existing conduit in a reoperation may successfully improve blood flow to the liver. For future procedures, he notes that in his own practice, he now uses the lateral tunnel approach whenever possible.

Read the study: Alarming rate of liver cirrhosis after the small conduit Extracardiac Fontan. A comparative analysis with the Lateral Tunnel.

2024 Pediatric Academic Societies meeting logo

Children’s National Hospital at the 2024 Pediatric Academic Societies meeting

Children’s National Hospital-affiliated participants will present at this year’s Pediatric Academic Societies meeting. The meeting will take place in Toronto, from May 2-6, 2024. For information on the presentations, please refer to the chart below.

Day Time Presenter(s) Title
5/3/2024 9:00 AM Stacey Stokes, M.D., M.P.H. APA QI: Informatics for Improvers: Leveraging Clinical Decision Support to Propel Data-Driven and Reliable Continuous Improvement
5/3/2024 12:00 PM Rana F. Hamdy, M.D., M.P.H., MSCE A Career in Antimicrobial Stewardship… so Much More to Explore
5/3/2024 12:00 PM Ashima Gulati, M.D., Ph.D., FASN Case Studies in Pediatric Kidney Diseases: Who, When and How to Order Genetic Testing?
5/3/2024 3:45 PM Priti Bhansali, M.D., ME.d. iSPOT an Improvement: Taking Peer Observation and Feedback to the Next Level
5/3/2024 3:45 PM Josepheen De Asis-Cruz, M.D., Ph.D. Maternal psychopathology and SSRI use during pregnancy are associated with altered fetal hippocampal connectivity in utero
5/4/2024 8:00 AM Andrea J. Boudreaux, Psy.D., M.P.H., M.H.A., F.A.C.H.E. A Doctor in the School Nurse’s Office? Bringing a Virtual School Based Program into Practice
5/4/2024 8:00 AM Jessica Hippolyte, M.D., M.P.H. A Practical Approach to a Thorny Issue: Evaluating the Role of Race, Ethnicity, and Ancestry in Clinical Decision-Making
5/4/2024 8:00 AM Ashraf S. Harahsheh, M.D., F.A.A.P., F.A.C.C. Cardiology 1
5/4/2024 8:00 AM Dewesh Agrawal, M.D. Emergency Medicine 1: Quality and Safety
5/4/2024 8:00 AM Lenore Jarvis, M.D., ME.d.
Amanda Stewart, M.D., M.P.H.
From Bedside to State House: Daily Advocacy
5/4/2024 8:00 AM Aisha Barber, M.D., ME.d. Unionization in Pediatrics: A Pro-Con Debate
5/4/2024 8:45 AM Jillian E. Nickerson, M.D., M.S. Implementation of tele-psychiatry in an urban pediatric satellite emergency department
5/4/2024 9:00 AM Jessica Weisz, M.D. “TEACH”ing: Evaluation of a 3-Year Multimodal Child Poverty Curriculum
5/4/2024 9:00 AM Tameka T. Watson, M.D. Timing of Growth Failure in Very Premature Infants and Implications for Brain Development
5/4/2024 10:00 AM Neha H. Shah, M.D., M.P.H. Subspecialty Networking Breakout: Pediatric Hospital Medicine
5/4/2024 11:00 AM Lee S. Beers, M.D. AAP Presidential Plenary: Emerging Research on the Intersections of Mental Health, Impact of the Pandemic, and Equity, Diversity, and Inclusion
5/4/2024 11:00 AM Denver Brown, M.D. Implications of SDOH on glomerular disease, hypertension and CKD
5/4/2024 11:15 AM Josepheen De Asis-Cruz, M.D., Ph.D. Associations Between Antenatal Opioid Exposure and Newborn Functional Brain Connectivity
5/4/2024 2:00 PM Ian Chua, M.D., M.H.P.E. Addressing Misinformation & Building Competency for Gender Diverse Patient Care
5/5/2024 8:00 AM Tamara Gayle, M.D., ME.d., M.P.H. APA SIG: Pediatric Hospital Medicine – Creating an Inclusive and Sustainable Workplace
5/5/2024 8:00 AM Suma B. Hoffman, M.D., M.S.
Simranjeet S. Sran, M.E., ME.d., C.H.S.E., F.A.A.P.
Hands on Workshop: Complex Resuscitations in Neonates and Infants – Managing High Acuity, Low Occurrence (HALO) Events
5/5/2024 8:15 AM Jaytoya Manget, D.N.P., M.S.P.H., F.N.P. Connecting the Dots to Improve Health and Education Equity: Results of A Pilot Program Integrating School Attendance Data into a Pediatric Primary Care
5/5/2024 8:55 AM Aisha Barber, M.D., ME.d. APA Pediatric Hospital Medicine SIG – Creating an Inclusive and Sustainable Workplace
5/5/2024 11:00 AM Nicola Brodie, M.D.
Julie Heier, Ph.D.
Courtney Horton, M.D.
Darcel Jackson, C.P.X.P., L.S.S.G.B.
Emma Whitmyre, Ph.D.
Challenge Accepted: Integrating Behavioral Health in Primary Care for Children with Medical Complexity and Their Families
5/5/2024 11:00 AM Ian Chua, M.D., M.H.P.E.
Margarita Ramos, M.D., M.S.
Neha H. Shah, M.D., M.P.H.
Embracing Failure: The Key To Success In Academic Medicine
5/5/2024 11:00 AM Caleb E. Ward, M.B., B.Chir., M.P.H. Emergency Medicine 4
5/5/2024 11:00 AM Dewesh Agrawal, M.D.
Terry Kind, M.D., M.P.H.
Launching and Landing a Career in Medical Education: From Passion to Profession
5/5/2024 11:00 AM Nathaniel S. Beers, M.D., M.P.A.
Andrea J. Boudreaux, Psy.D., M.P.H., M.H.A., F.A.C.H.E.
Bianca Johnson, M.S.W.
Jaytoya Manget, D.N.P., M.S.P.H., F.N.P.
Jessica Weisz, M.D.
School Attendance as a Vital Sign: Integrating school attendance into practice to advance health and educational equity
5/5/2024 11:05 AM Sudeepta Basu, M.D. SPR 2023 Bridging to Success Award: GABA-editing spectroscopy for understanding the developing brain in preterm infants.
5/5/2024 2:00 PM Allison M. Jackson, M.D., M.P.H. Child Protective Services Referrals in the Context of Intimate Partner Violence: Clinical Practice, Research, & Advocacy
5/5/2024 2:00 PM Josepheen De Asis-Cruz, M.D., Ph.D. In utero SSRI exposure alters fetal cerebral cortical development and structural brain connectivity
5/5/2024 2:00 PM Jeremy Kern, M.D.
Lydia Lissanu, M.D.
Elana Neshkes, M.D.
Laura A. Nicholson, M.S.N., R.N., C.P.N., C.H.S.E.
Grace Quinn, M.D.
Ariella M. Weinstock, M.D., M.S. Ed
STRIVE for a restorative de-escalation: Strategies for a TRauma-Informed approach using Verbal and Environmental Skills
5/5/2024 2:45 PM Kristen Sgambat, Ph.D., RD Arterial stiffness, body composition, and perception of racism in pediatric kidney transplant recipients
5/5/2024 2:45 PM Sudeepta Basu, M.D. Cerebellar GABA and Glutamate Concentrations at Term-equivalent age Predicts 18-month Cognitive Deficits in Preterm Infants
5/6/2024 8:00 AM Ian Chua, M.D., M.H.P.E.
Gabrina Dixon, M.D., ME.d.
Tamara Gayle, M.D., ME.d., M.P.H.
Margarita Ramos, M.D., M.S.
Amplify Your Voice: Media Strategies Beyond Conventional Academic Dissemination
5/6/2024 8:00 AM Stacey Stokes, M.D., M.P.H.
Padma Swamy, M.D., M.P.H.
APA SIG: Health Informatics and Serving the Underserved Combined – Moving the Needle on Social Needs: From Screening to Data Management and Response
5/6/2024 8:00 AM Deena Berkowitz, M.D., M.P.H. APA Urgent Care SIG: You’re Not Too Busy To Think About Promotion: Leveraging Your Current Scholarly Activities For Academic Advancement
5/6/2024 8:30 AM Padma Swamy, M.D., M.P.H. Screening, data sharing, and resource allocation considerations when developing social needs interventions
5/6/2024 1:00 PM Christina Lindgren, M.D. APA Simulation-based Medical Education (SBME) SIG
5/6/2024 1:00 PM Gabrina Dixon, M.D., ME.d. Creating and Optimizing a Visiting Elective at your Institution for Underrepresented in Medicine (URiM) Students
5/6/2024 1:00 PM Junghoon Kim, Ph.D. Improved prediction of fetal neurobiological features by censoring high-motion frames in fetal functional MRI
5/6/2024 1:05 PM Christina Lindgren, M.D. Introduction to Conceptual Frameworks for Simulation Based Medical Education
5/6/2024 1:10 PM Suma B. Hoffman, M.D., M.S. Small Group Activity: Name That Conceptual Framework
5/6/2024 2:15 PM Margaret Rush, M.D., M.S.H.S. Racial disparities in hospital length of stay for bacterial tracheostomy associated infections

 

Toronto skyline with AATS logo

Children’s National at the104th Annual AATS Meeting

Attending the American Association for Thoracic Surgery’s 104th Annual Meeting this weekend? Stop by the Children’s National Booth #1315! Here is a look at the topics that our Childrens National Heart Center will be presenting on. We look forward to connecting with you in Toronto.

Name Session & Role Topic Type Date Time Location
Can Yerebakan, M.D. Congenital Scientific Session: Strategies for Management of the Borderline Heart

(Speaker)

 

Debate: Hybrid is the Default Pathway- Pro Oral Presentation Saturday, April 27, 2024 8:50 a.m. Room 716
Yves d’Udekem, M.D., Ph.D. AATS/CHSS Summit: Hypoplastic Left Heart Syndrome

(Commentator)

 

Are We Getting better? Ongoing Challenges of Atrioventricular Valve Repair in Single Ventricle Patients with Right Ventricular Morphology Oral Presentation Saturday, April 27, 2024 1:30 – 3:56 p.m. Room 716
Yves d’Udekem, M.D., Ph.D. Congenital Rapid Fire Orals – Theater Session I

(Case Video Presenter)

Early Pulmonary veins Channeling in a Complex Heterotaxia Heart wit Oral Presentation Sunday, April 28, 2024 9:12 a.m. Theater 1
Eiri Kisamori, M.D. Congenital Rapid Fire Orals

(Presenter)

Alarming Rate of Liver Cirrhosis After the Small Conduit Extracardiac Fontan.

A Comparative Analysis With the Lateral Tunnel.

Abstract Presentation Sunday, April 28, 2024 11:43 a.m. Room 716
Rittal Mehta, MS, BDS Congenital Poster Session II

(Presenter)

Navigating the Future of Pediatric Cardiovascular surgery: Insights and Innovation powered by ChatGPT. Poster Presentation Monday, April 29, 2024 8:00 a.m. Poster Area
Can Yerebakan, M.D. Congenital Poster Session II

(Presenter)

Can Delayed Norwoods in High Risk Patients Achieve Similar Results than Primary Norwood for Low Risk Patients. Poster Presentation Monday, April 29, 2024 8:00 a.m. Poster Area
Arif Selcuk, M.D. Congenital Rapid Fire Orals – Theater Session III

(Presenter)

Initial Rescue of a High-Risk Newborn by Atrial Kissing Procedure’ for Left Atrium Decompression and Bilateral Pulmonary Artery Banding. Case Video Presentation Monday, April 29, 2024 3:51 p.m. Theater 1
Yves d’Udekem, M.D., Ph.D. Congenital Disasters and Rescues

(Speaker)

Mitral Valve Repair Techniques in Neonates and Infants’ Rather than a Specific Situation? Oral Presentation Tuesday, April 30, 2024 8:45 a.m. Room 716
Marius George Linguraru giving a lecture on AI

Artificial – and accelerated – intelligence: endless applications to expand health equity

In the complex world of pediatric diseases, researchers need access to data to develop clinical trials and the participation of vulnerable patients to develop new devices and therapies. Both are in short supply, given that most children are born healthy, and most severe pediatric diseases are rare.

That creates a dilemma: how do researchers build a foundation to advance new treatments? Enter artificial intelligence (AI).

“AI is the equalizer: accelerated intelligence for sick kids. No other advance on the horizon holds more promise for improving equity and access to pediatric healthcare when diseases are rare and resources are limited,” says Marius George Linguraru, D.Phil., M.A., M.Sc., the Connor Family Professor in Research and Innovation and principal investigator in the Sheikh Zayed Institute for Pediatric Surgical Innovation (SZI). “AI will shrink the distance between patient and provider, allowing our physicians and scientists to provide targeted healthcare for children more efficiently. The possibilities are endless.”

Why we’re excited

By pioneering AI innovation programs at Children’s National Hospital, Dr. Linguraru and the AI experts he leads are ensuring patients and families benefit from a coming wave of technological advances. The team is teaching AI to interpret complex data that could otherwise overwhelm clinicians. Their work will create systems to identify at-risk patients, forecast disease and treatment patterns, and support complex clinical decisions to optimize patient care and hospital resources. Already, the AI team at SZI has developed data-driven tools touching nearly every corner of the hospital:

  • AI for rheumatic heart disease (RHD): In partnership with Children’s National cardiology leaders, including Craig Sable, M.D., the Uganda Heart Institute and Cincinnati Children’s Hospital, the AI team has developed an algorithm that can use low-cost, portable ultrasound imaging to detect RHD in children and young adults, a disease that takes nearly 400,000 lives annually in limited-resource countries. Early testing shows the AI platform has the same accuracy as a cardiologist in detecting RHD, paving the way for earlier treatment with life-saving antibiotics. This year, Children’s National physicians will be in Uganda, screening 200,000 children with local cardiology experts and AI technology.
  • Newborn screening for genetic conditions with mGene: Working with Rare Disease Institute clinicians and Chief of Genetics and Metabolism Debra Regier, M.D., the AI team has built technology to detect rare genetic disorders, using an algorithm and a smartphone camera to identify subtle changes in facial features. Tested on patients from over 30 countries and published in The Lancet Digital Health, the application helps screen children for advanced care when a geneticist may not be within reach. With funding from the National Institutes of Health, Children’s National and its research partners are piloting a newborn screening program in the Democratic Republic of the Congo.
  • Pediatric brain tumors: To improve and personalize the treatment decisions for children with brain tumors, Dr. Linguraru’s team is working with Brain Tumor Institute Director Roger Packer, M.D., the Gilbert Family Distinguished Professor of Neurofibromatosis, on algorithms that can characterize and measure brain tumors with unprecedented precision. The team recently won the International Pediatric Brain Tumor Segmentation Challenge, distinguishing the Children’s National algorithm as among the best in the world.
  • Ultra-low field magnetic resonance imaging (MRI): With a grant from the Bill & Melinda Gates Foundation, the AI team is working alongside Children’s Hospital Los Angeles, King’s College London and the UNITY Consortium to expand global brain imaging capacity. The consortium is helping clinicians in limited-resource countries improve the treatment of neonatal neurological conditions, using AI to boost the quality of ultra-low field MRI and expand access to this portable and more affordable imaging option.
  • Federated learning: Children’s National has collaborated with NVIDIA and other industry leaders to accelerate AI advances through federated learning. Under this approach, institutions share AI models rather than data, allowing them to collaborate without exposing patient information or being constrained by essential data-sharing restrictions. The SZI team was the only pediatric partner invited to join the largest federated learning project of its kind, studying the lungs of COVID-19 patients. Details were published in Nature Medicine.

Children’s National leads the way

Looking ahead, the Children’s National AI team is pursuing a wide range of advances in clinical care. To support patients treated at multiple clinics, they are developing systems to harmonize images from different scanners and protocols, such as MRI machines made by different manufacturers. Similar work is underway to analyze pathology samples from different institutions consistently.

Automation is also making care more efficient. For example, using data from 1 million chest X-rays, the team is collaborating with NVIDIA to develop a conversational digital assistant that will allow physicians to think through 14 possible diagnoses.

Dr. Linguraru says he and his colleagues are galvanized by the jarring statistic that one in three children with a rare disease dies before age 5. While well-implemented AI initiatives can change outcomes, he says the work must be done thoughtfully.

“In the future, patients will be evaluated by human clinicians and machines with extraordinary powers to diagnose illness and determine treatments,” Dr. Linguraru said. “Our team at Children’s National is leading conversations about the future of pediatric healthcare with a focus on safety, resource allocation and basic equity.”

Learn more about our AI initiatives

Innovation leaders at Children’s National Hospital are building a community of AI caregivers through educational and community-building events. At the inaugural Symposium on Artificial Intelligence in 2023 at the Children’s National Research & Innovation Campus, experts from Virginia Tech, JLABS, Food and Drug Administration, Pfizer, Oracle Health, NVIDIA, AWS Health and elsewhere laid out a vision for using data to advance pediatric medicine. The symposium will return on Sept. 6.

Dr. Linguraru is the program chair of MICCAI 2024, the top international meeting on medical image computing and computer-assisted intervention and the preeminent forum for disseminating AI developments in healthcare. The conference is an educational platform for scientists and clinicians dedicated to AI in medical imaging, with a focus on global health equity. It will take place for the first time in Africa on Oct. 6-10.

 

 

Baby wearing Gabi SmartCare device

Supporting breakthroughs in at-home pediatric monitoring

Baby wearing Gabi SmartCare device

The child-sized, lightweight, wearable band enables at-home monitoring of patient vital signs.

As their infant daughter recovered from a life-threatening virus, tech executive Jonathan Baut and his wife lived in a constant state of alert for any signs of a change in her condition. That experience prompted Baut to look for an at-home vital signs monitoring solution for parents facing medical challenges at home.

He located the technology in Belgium and found the clinical support to advance the innovation at Children’s National Hospital, tapping into its leadership of a pediatric device consortium funded by the Food and Drug Administration (FDA), the Alliance for Pediatric Device Innovation (APDI).

The technology platform, called Gabi SmartCare, features a tiny, lightweight, wearable band made for children that enables at-home monitoring of a patient’s vital signs including oxygen saturation,  and heart rate movement. It also supports the collection of other data about health conditions through health assessment.

The big picture

Wireless home-based monitoring could reduce hospital stays while improving the transitional care provided to patients at home. It could also aid in the home care of chronically ill patients.

Recently, Gabi SmartCare received its FDA clearance as a class II device for monitoring use. Baut says the multifaceted support he received from Children’s National and APDI helped him achieve this critical milestone, including the hospital’s role as one of two U.S. clinical trial sites for the device.

He explained that the APDI team also connected him with experts in device trials, regulatory processes and reimbursement, which helped him better understand the U.S. market and the nuances of the pediatric continuum of care.

Gabi SmartCare monitoring screens

Physicians can remotely monitor patient’s oxygen saturation and heart rate movement.

As he focuses on getting his product into hospitals, Baut already has additional monitoring features in development for Gabi SmartCare including respiratory rate, actigraphy, skin auto-calibration and sleep phases.

Why it matters

Reliable at-home monitoring tools can expand a pediatric hospital’s capabilities to support patients beyond the hospital setting. They can also help reduce trips to the emergency room and reduce the stress and anxiety parents experience when providing home care. Helping to advance devices like these can deliver those benefits to patient families at Children’s National and beyond.

“The pandemic underscored a great need for technologies that improve remote monitoring for children,” said Kolaleh Eskandanian, Ph.D. M.B.A., P.M.P., Children’s National vice president and chief innovation officer and program director of APDI. “At-home monitoring devices enable remote and continuous surveillance of pediatric patients, ensuring timely intervention and optimal care delivery even in remote or resource-limited settings. These technologies are needed now, and even more during public health emergencies.”

Illustration showing phthalate exposure during cardiopulmonary bypass

Pediatric heart patients exposed to plastic chemicals during cardiopulmonary bypass

Children undergoing cardiac surgery using cardiopulmonary bypass are exposed to high levels of plastic chemical additives called phthalates, including DEHP, according to the largest single center study to date to measure this exposure. The findings were authored by a multi-disciplinary group from Children’s National Hospital and appear in the journal Transfusion.

What is it?

Di(2-ethylhexyl) phthalate (DEHP) is one of the most commonly used plasticizers in polyvinyl chloride (PVC) plastics, making up 40% to 80% of the finished weight of medical-grade tubing and blood storage bags. The study’s primary goal was to quantify three aspects of pediatric cardiac surgery: the phthalate exposure with and without cardiopulmonary bypass (the heart and lung machine), the time it takes for phthalates to clear after surgery and any correlations between higher phthalate exposures and postoperative complications.

The authors suggested that, like infants in the NICU exposed to various medical equipment, children on cardiopulmonary bypass are likely exposed to significant DEHP levels from blood products, bypass circuit components, and endotracheal tubes, potentially impacting postoperative outcomes.

Why does it matter?

Despite daily phthalate exposure in the general population, studies link high phthalate levels to developmental delays in language and motor skills. Phthalates accumulate in the hearts of infants undergoing umbilical catheterizations or blood transfusions. This is worrisome as even low-dose environmental exposure correlates with higher risks of overall and cardiovascular-related mortality.

Knowing these risks exist, it is important to understand these exposures, what causes them and implement measures to mitigate them, safeguarding medically fragile children. Regulatory actions in NICUs have reduced DEHP-containing plastics, yet no such efforts have been made for children on cardiopulmonary bypass.

The study also found some associations between postoperative complications and higher levels of phthalates, especially in younger children. They write, “it is plausible that a combination for risk factors (young age, longer CPB duration, increased phthalate exposure) collectively contribute to these complications.” More research is needed to understand the association and the impact of phthalates on how children recover from surgery.

Children’s National leads the way

The study involved 110 pediatric patients undergoing 122 cardiac surgeries at Children’s National, marking the largest single-center investigation into phthalate exposures in cardiac surgery. Led by a multidisciplinary team, including divisions of Transfusion Medicine and Cardiac Surgery, along with researchers from the Sheikh Zayed Institute for Pediatric Surgical Innovation, the study’s findings are some of the first to quantify that pediatric cardiac surgery patients are exposed to greater levels of these phthalate chemicals from plastic medical products, with increasing exposure the longer they require cardiopulmonary bypass. This is especially true when the bypass uses a prime based on red blood cells.

What’s next

The teams are exploring strategies to minimize chemical exposures, such as:

  • Using freshly donated blood products (made possible at Children’s National by the unique on-site Blood Donor Center).
  • Storing blood in DEHP-free storage bags prior to use when possible.
  • Increasing use of cell-saver equipment, which washes red blood cell products and removes extracellular contaminants.
  • At Children’s National, cardiac surgeons prioritize the use of recently collected, washed red blood cells in cardiopulmonary bypass cases, especially for younger and/or smaller patients.

“These exposures will affect patients undergoing pediatric cardiac surgery at any institution,” says first author Devon Guerrelli, M.S. “But we hope understanding what’s causing the exposures will help operating rooms around the United States take immediate small steps, like using washed red blood cells, to begin mitigating these exposures as soon as possible.”

Senior author Nikki Posnack, Ph.D., adds that the implications of phthalates on health are tremendous. “Studies have shown that heightened phthalate exposure increases your risk of all-cause and cardiovascular mortality,” she said. “Now is the time to support research efforts to understand how plastic chemicals damage the heart and to investigate strategies to reduce their overall impact.”

Read the study:
Prevalence and clinical implications of heightened plastic chemical exposure in pediatric patients undergoing cardiopulmonary bypass

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

Wayne J. Franklin, M.D., F.A.C.C., named senior vice president of Children’s National Heart Center

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

Dr. Franklin will oversee the full spectrum of heart care services including cardiac imaging and diagnostics, interventional cardiology, electrophysiology, cardiac anesthesia, cardiac surgery and cardiac intensive care.

Children’s National Hospital has appointed Wayne J. Franklin, M.D., F.A.C.C., as the new senior vice president (SVP) of the Children’s National Heart Center. In this role, Dr. Franklin will oversee the full spectrum of heart care services including cardiac imaging and diagnostics, interventional cardiology, electrophysiology, cardiac anesthesia, cardiac surgery and cardiac intensive care. He joins us from Phoenix Children’s in Arizona and starts June 2024.

Dr. Franklin currently serves as co-director, medical director of Quality and endowed chair in the Center for Heart Care and associate director of the Adult Congenital Heart Disease Program at Phoenix Children’s. He’s also a professor of Child Health, Medicine, and Obstetrics and Gynecology at the University of Arizona College of Medicine – Phoenix.

Dr. Franklin is involved with research focused on adults with congenital heart disease, specifically single ventricle-Fontan physiology, neurocognitive outcomes, pulmonary hypertension, cardiac disease in pregnancy and transition medicine. After a national search, he stood out for his clinical and research accomplishments, as well as his demonstrated ability as a visionary leader and mentor.

“I look forward to leading the exceptional Heart Center team at Children’s National, as we contribute to advancing pediatric cardiac care and research,” said Dr. Franklin. “There is a clear dedication to clinical excellence and innovation, and together we’ll continue to advance the field and make a lasting impact on the lives of the children and families we serve.”

Dr. Franklin is a graduate of Williams College in Williamstown, MA, and UCLA School of Medicine. He completed his residency training in internal medicine and pediatrics at Duke University. He then completed two simultaneous fellowships in adult cardiology and pediatric cardiology at St. Luke’s/Texas Heart Institute and at Baylor College of Medicine/Texas Children’s Hospital in Houston.

“Dr. Franklin brings a wealth of expertise and steadfast leadership that will undoubtedly strengthen the foundation of our cardiac program,” said David Wessel, M.D., executive vice president, chief medical officer and physician-in-chief at Children’s National. “Together with our Heart Center leadership team, he will ensure we’re meeting the highest standards of safety, quality and innovative care for our patients and families.”

The Children’s National Heart Center is a multidisciplinary center that provides high-quality and innovative pediatric cardiac care. In his role as SVP, Dr. Franklin will lead our Heart Center to new heights in pediatric heart care, innovation and education, working together with Yves d’Udekem, M.D., Ph.D., chief of the Division of Cardiac Surgery, Ricardo Muñoz, M.D., chief of the Division of Cardiac Critical Care Medicine and Andrew Waberski, M.D., director of Pediatric Cardiac Anesthesia.

Bloom Standard 2 Portable UltraSound Device being used on a baby

Novel ultrasound device gets FDA breakthrough designation with Children’s National support

The Bloom Standard device enables autonomous, hands-free ultrasound scans to be performed anywhere, by any user.

A novel ultrasound device developed by Bloom Standard received the Food and Drug Administration’s valued  breakthrough device designation with the help of Children’s National Hospital and support provided through an  FDA-funded grant that established the Alliance for Pediatric Device Innovation (APDI), formerly branded as the National Capital Consortium for Pediatric Device Innovation (NCC-PDI). The grant funding, clinical expertise and regulatory guidance demonstrate the hospital’s leadership in pediatric medical device innovation and its commitment to supporting critically needed advancements.

“In many ways, Children’s National has been a key resource as we continue this journey from concept to commercialization,” said Annamarie Saarinen, co-founder of Bloom Standard and the mother of an infant who was diagnosed with a critical heart defect days after her birth.

Why we’re excited

Children’s National Innovation Ventures and APDI leaders saw the value in the Bloom Standard innovation: a device that enables autonomous, hands-free ultrasound scans to be performed anywhere, by any user. The FDA granted the innovation its breakthrough device designation to help streamline the regulatory process so that patients and healthcare providers have more timely access to devices.

Bloom Standard can potentially save lives and improve outcomes for newborns and babies with cardiac and respiratory issues. The technology can eliminate the delay that often occurs for infants who need ultrasound imaging because their medical location lacks the technology. Bloom Standard’s portability and ease of use can potentially reduce mortality and poor outcomes tied to delayed detection of lung and cardiac conditions. It has potential cost savings, too.

Children’s National leads the way

Children’s National supported this novel medical technology for children by engaging in multiple steps through the regulatory process:

  • Grant funding: Bloom Standard participated in pediatric pitch competitions in 2020 and 2022 and each time, because of the merits of the device, was awarded grant funding that helped to support its progression.
  • Regulatory support: Children’s National pediatrician Francesca Joseph, M.D., brings a wealth of expertise navigating the FDA’s regulatory processes and currently service as co-investigator and core regulatory expert for the pediatric device consortium led by Children’s National. Saarinen called Dr. Joseph “an invaluable resource,” explaining that her input and support has been very significant in Bloom Standard’s understanding and navigation of FDA processes. “For a small device company like ours, she has been a lifeline,” Saarinen said.

Saarinen says she is grateful for the continuing relationship with Children’s National as her company enters its next phase on the journey to commercialization.

Children’s National Vice President and Chief Innovation Officer Kolaleh Eskandanian, Ph.D., MBA, PMP, who directs the FDA-funded Alliance for Pediatric Device Development, says that nurturing and supporting life-saving technologies like Bloom Standard is important because the device addresses a dire unmet need in the pediatric space, especially in settings with fewer resources and in public health emergency situations. “Advancements in children’s medical devices continue to lag behind those of adults, and we must use our research and innovation infrastructure to help close that gap and to influence policy changes.”

Newborn baby in a crib

Pioneering research center aims to revolutionize prenatal and neonatal health

Catherine Limperopoulos, Ph.D., was drawn to understanding the developing brain, examining how early adverse environments for a mother can impact the baby at birth and extend throughout its entire lifetime. She has widened her lens – and expanded her team – to create the new Center for Prenatal, Neonatal & Maternal Health Research at Children’s National Hospital.

“Despite the obvious connection between mothers and babies, we know that conventional medicine often addresses the two beings separately. We want to change that,” said Dr. Limperopoulos, who also directs the Developing Brain Institute. “Given the current trajectory of medicine toward precision care and advanced imaging, we thought this was the right moment to channel our talent and resources into understanding this delicate and highly dynamic relationship.”

Moving the field forward

Since its establishment in July 2023, the new research center has gained recognition through high-impact scientific publications, featuring noteworthy studies exploring the early phases of human development.

Dr. Limperopoulos has been at the forefront of groundbreaking research, directing attention to the consequences of maternal stress on the unborn baby and the placenta. In addition, under the guidance of Kevin Cook, Ph.D., investigators published a pivotal study on the correlation between pain experienced by premature infants in the Neonatal Intensive Care Unit and the associated risks of autism and developmental delays.

Another area of research has focused on understanding the impact of congenital heart disease (CHD) on prenatal brain development, given the altered blood flow to the brain caused by these conditions during this period of rapid development. Led by Josepheen De Asis-Cruz, M.D., Ph.D., a research team uncovered variations in the functional connectivity of the brains of infants with CHD. In parallel, Nickie Andescavage, M.D., and her team employed advanced imaging techniques to identify potential biomarkers in infants with CHD, holding promise for guiding improved diagnostics and postnatal care. Separately, she is investigating the impact of COVID-19 on fetal brain development.

In the months ahead, the team plans to concentrate its efforts on these areas and several others, including the impact of infectious disease, social determinants of health and protecting developing brains from the negative impacts of maternal stress, pre-eclampsia and other conditions prevalent among expectant mothers.

Assembling a team

Given its robust research plan and opportunities for collaboration, the center pulled together expertise from across the hospital’s faculty and has attracted new talent from across the country, including several prominent faculty members:

  • Daniel Licht, M.D., has joined Children’s National to build a noninvasive optical device research group to better care for children with CHD. Dr. Licht brings decades of experience in pediatric neurology, psychiatry and critical care and is recognized internationally for his expertise in neurodevelopmental outcomes in babies with CHD.
  • Katherine L. Wisner, M.S., M.D., has accumulated extensive knowledge on the impact of maternal stress on babies throughout her career, and her deep background in psychiatry made her a natural addition to the center. While Dr. Wisner conducts research into the urgent need to prioritize maternal mental health, she will also be treating mothers as part of the DC Mother-Baby Wellness Initiative — a novel program based at Children’s National that allows mothers to more seamlessly get care for themselves and participate in mother-infant play groups timed to align with their clinical appointments.
  • Catherine J. Stoodley, B.S., M.S., D.Phil., brings extensive research into the role of the cerebellum in cognitive development. Dr. Stoodley uses clinical studies, neuroimaging, neuromodulation and behavioral testing to investigate the functional anatomy of the part of the brain responsible for cognition.
  • Katherine M. Ottolini, M.D., attending neonatologist, is developing NICU THRIVE – a research program studying the effects of tailored nutrition on the developing newborn brain, including the impact of fortifying human milk with protein, fat and carbohydrates. With a grant from the Gerber Foundation, Dr. Ottolini is working to understand how personalized fortification for high-risk babies could help them grow.

Early accolades

The new center brings together award-winning talent. This includes Yao Wu, Ph.D., who recently earned the American Heart Association’s Outstanding Research in Pediatric Cardiology award for her groundbreaking work in CHD, particularly for her research on the role of altered placental function and neurodevelopmental outcomes in toddlers with CHD. Dr. Wu became the third Children’s National faculty member to earn the distinction, joining an honor roll that includes Dr. Limperopoulos and David Wessel, M.D., executive vice president and chief medical officer.

Interim Chief Academic Officer Catherine Bollard, M.D., M.B.Ch.B., said the cross-disciplinary collaboration now underway at the new center has the potential to make a dramatic impact on the field of neonatology and early child development. “This group epitomizes the Team Science approach that we work tirelessly to foster at Children’s National,” Dr. Bollard said. “Given their energetic start, we know these scientists and physicians are poised to tackle some of the toughest questions in maternal-fetal medicine and beyond, which will improve outcomes for our most fragile patients.”

Daniel J. Licht, M.D.

Q&A with Daniel J. Licht, M.D.: The future of medicine is in light

Daniel J. Licht, M.D.

A pediatric neurologist who specializes in children with congenital heart disease, Dr. Licht initially came to this area of research as he considered ways to ensure children’s brains have adequate oxygen delivery during heart care, preserving neurological health and improving long-term outcomes.

Daniel J. Licht, M.D., joins Children’s National Hospital with a vision: He believes non-invasive devices built using biomedical optics – or instruments using light – can give clinicians invaluable information about how the brain and other organs are functioning.

A pediatric neurologist who specializes in children with congenital heart disease, Dr. Licht initially came to this area of research as he considered ways to ensure children’s brains have adequate oxygen delivery during heart care, preserving neurological health and improving long-term outcomes. He sees countless applications for using the properties of light in pediatric medicine.

Dr. Licht, whose name coincidentally also means “light” in German, is planning to establish a program for biomedical optics at Children’s National, built on the pillars of education, innovation and commercialization. He wants to tap into the resources of the Sheik Zayed Institute of Pediatric Surgical Innovation and expertise across the hospital. He is launching this effort as part of the new Center for Prenatal, Neonatal & Maternal Health Research.

Q: How can light be used diagnostically?

A: I believe that light is truly the future of biomedical devices, especially in children. Light can penetrate human tissues deeply, whether it’s muscle, liver or kidney. For example, you can put a light at the end of an endoscope and someday do virtual biopsies. It’s all a matter of understanding the properties of light, and how to manipulate light to give you the answers that you need. The applications are truly infinite.

Q: What has your initial work in neurology shown?

A: One of the instruments that we have developed can measure cerebral blood flow and quantitatively show the oxygen use of the brain. That’s important because it’s easy to measure oxygen delivery, but it’s hard to balance supply-and-demand without knowing the patient’s unique demand. We now have preclinical data and information from about 500 patients.

In terms of what’s ahead, many therapies today aren’t targeted to the individual, so Johnny’s brain-oxygen demand may not be the same as Sarah’s brain-oxygen demand, even if they both have congenital heart disease. As a patient waits for surgery, we also have found that the brain-oxygen demand increases, but if the demand is not met, this can lead to pre-operative brain injury. This technology could change the whole conversation about the timing of surgery. In addition, we can measure the brain-oxygen demand intraoperatively. We are finding that we can actually define the right perfusion strategy for each patient, rather than making uniform decisions for all patients with a shared diagnosis.

Lastly, beyond the operating room, we can use this technology for countless conditions. It would help with the treatment of almost any disease in the critical care unit, when we are using tools like ECMO (extracorporeal membrane oxygenation, a salvage technique), and we need to monitor a patient’s status. We can also use it to measure intracranial pressure. In very simple terms, if a child with a shunt comes into the emergency room with a headache, we can noninvasively measure the pressure and see how it’s changed without a head CT. We can decide who needs to go to the operating room – and who doesn’t – without radiation.

Q: How did your career bring you to this point?

A: My interest has always been in brain injury and kids with congenital heart disease. Years ago, I started out using MRI because it was the technology that was bright and shiny at the time. I was part of a team that developed an MRI sequence for measuring cerebral blood flow. We made some discoveries that indicated the culprit for brain injury was not the surgeries. Instead, there was something with the babies.

Unfortunately, with MRI, it’s a big, expensive instrument, and you have to take the baby to the machine for a single point-in-time measurement. So I started working with a physicist at the University of Pennsylvania to develop a way to measure the motion of particles, specifically red blood cells, to study cerebral blood flow. We found ways to use light, and this is what I hope to build and commercialize at Children’s National. By the end of my career, I hope to be able to say that we got this into clinical care.

Cayden rides a horse with her father

Earliest hybrid HLHS heart surgery kids thrive 5 years later

Cayden rides a horse with her father

Five years ago, Cayden was born 6 weeks early weighing less than four pounds and at risk of dying from her critical congenital heart disease. Today, she’s a happy five-year-old who is excited to start kindergarten this fall.

Five years ago, Cayden was born 6 weeks early weighing less than four pounds and at risk of dying from her critical congenital heart disease. Today, she’s a happy five-year-old who is excited to start kindergarten this fall.

Early diagnosis of her hypoplastic right ventricle, double inlet left ventricle and critical coarctation of the aorta allowed for the team at Children’s National Hospital to create a careful plan for safe delivery and to offer an innovative hybrid HLHS surgical approach at the hospital within 24 hours after she was born.

“Truly in my own heart, I do not believe Cayden would be alive today without Dr. Yerebakan and those early hybrid procedures,” says her mom, Casey.

Can Yerebakan, M.D., associate chief of Cardiac Surgery, and Joshua Kanter, M.D., director of Interventional Cardiology, have performed more of these hybrid procedures together at Children’s National than just about anywhere else in the United States. And they are the only team in the country using a special toothpick-sized flexible stent in the ductus. They worked directly with the U.S. Food and Drug Administration to bring these right-sized tiny stents to the U.S. from Europe.

Cayden was one of the first babies to benefit from this cutting-edge approach. In the five-plus years since then, more than 50 high-risk babies, some born as early as 28 weeks of gestation or weighing as little as 2 pounds at birth, have also benefited from hybrid procedures. Soon, the team will start performing hybrid procedures with catheters only, preventing an incision in the chest. This will allow the smallest babies to get the care they need with fewer open-chest procedures.

Read the rest of Cayden’s story here.

collage of news outlet logos

Children’s National in the News: 2023

collage of news outlet logos
Explore some of the notable medical advancements and stories of bravery that defined 2023, showcasing the steadfast commitment of healthcare professionals at Children’s National Hospital and the resilient spirit of the children they support. Delve into our 2023 news highlights for more.

1. COVID during pregnancy dramatically increases the risk of complications and maternal death, large new study finds

According to a study published in British Medical Journal Global Health, women who get COVID during pregnancy are nearly eight times more likely to die and face a significantly elevated risk of ICU admission and pneumonia. Sarah Mulkey, M.D., prenatal-neonatologist neurologist, discussed findings based on her work with pregnant women and their babies.
(Fortune)

2. Rest isn’t necessarily best for concussion recovery in children, study says

A study led by Christopher Vaughan, Psy.D., pediatric neuropsychologist, suggests that — despite what many people may presume — getting kids back to school quickly is the best way to boost their chance for a rapid recovery after a concussion.
(CNN)

3. Pediatric hospital beds are in high demand for ailing children. Here’s why

David Wessel, M.D., executive vice president, chief medical officer and physician-in-chief, explained that one reason parents were still having trouble getting their children beds in a pediatric hospital or a pediatric unit after the fall 2022 respiratory surge is that pediatric hospitals are paid less by insurance.
(CNN)

4. Anisha Abraham details impact of social media use on children: ‘True mental health crisis’

Anisha Abraham, M.D., M.P.H., chief of the Division of Adolescent and Young Adult Medicine, joined America’s Newsroom to discuss the impact social media access has had on children’s mental health.
(FOX News)

5. Saving Antonio: Can a renowned hospital keep a boy from being shot again?

After 13-year-old Antonio was nearly killed outside his mom’s apartment, Children’s National Hospital went beyond treating his bullet wounds. Read how our Youth Violence Intervention Program team supported him and his family during his recovery.
(The Washington Post)

6. Formerly conjoined twins reunite with doctors who separated them

Erin and Jade Buckles underwent a successful separation at Children’s National Hospital. Nearly 20 years later they returned to meet with some of the medical staff who helped make it happen.
(Good Morning America)

7. Asthma mortality rates differ by location, race/ethnicity, age

Shilpa Patel, M.D., M.P.H., medical director of the Children’s National IMPACT DC Asthma Clinic, weighed in on a letter published in Annals of Allergy, Asthma & Immunology, asserting that the disparities in mortality due to asthma in the United States vary based on whether they occurred in a hospital, ethnicity or race and age of the patient.
(Healio)

8. How one Afghan family made the perilous journey across the U.S.-Mexico border

After one family embarked on a perilous journey from Afghanistan through Mexico to the U.S.-Mexico border, they eventually secured entry to the U.S. where Karen Smith, M.D., medical director of Global Services, aided the family’s transition and provided their daughter with necessary immediate medical treatment.
(NPR)

9. When a child is shot, doctors must heal more than just bullet holes

With the number of young people shot by guns on the rise in the U.S., providers and staff at Children’s National Hospital are trying to break the cycle of violence. But it’s not just the physical wounds though that need treating: young victims may also need help getting back on the right track — whether that means enrolling in school, finding a new group of friends or getting a job.
(BBC News)

10. This 6-year-old is a pioneer in the quest to treat a deadly brain tumor

Callie, a 6-year-old diagnosed with diffuse intrinsic pontine glioma, was treated with low-intensity focused ultrasound (LIFU) at Children’s National Hospital and is the second child in the world to receive this treatment for a brain tumor. LIFU is an emerging technology that experts like Hasan Syed, M.D., and Adrianna Fonseca, M.D., are trialing to treat this fatal childhood brain tumor.
(The Washington Post)

11. F.D.A. approves sickle cell treatments, including one that uses CRISPR

The FDA approved a new genetic therapy, giving people with sickle cell disease new opportunities to eliminate their symptoms. David Jacobsohn, M.B.A., M.D., confirmed that Children’s National Hospital is one of the authorized treatment centers and talked about giving priority to the sickest patients if they are on Vertex’s list.
(The New York Times)

12. 6-year-old fulfils wish to dance in the Nutcracker

After the potential need for open-heart surgery threatened Caroline’s Nutcracker performance, Manan Desai, M.D., a cardiac surgeon, figured out a less invasive procedure to help reduce her recovery time so she could perform in time for the holidays.
(Good Morning America)

AI system that can detect RHD

Novel AI platform matches cardiologists in detecting rheumatic heart disease

Artificial intelligence (AI) has the potential to detect rheumatic heart disease (RHD) with the same accuracy as a cardiologist, according to new research demonstrating how sophisticated deep learning technology can be applied to this disease of inequity. The work could prevent hundreds of thousands of unnecessary deaths around the world annually.

Developed at Children’s National Hospital and detailed in the latest edition of the Journal of the American Heart Association, the new AI system combines the power of novel ultrasound probes with portable electronic devices installed with algorithms capable of diagnosing RHD on echocardiogram. Distributing these devices could allow healthcare workers, without specialized medical degrees, to carry technology that could detect RHD in regions where it remains endemic.

RHD is caused by the body’s reaction to repeated Strep A bacterial infections and can cause permanent heart damage. If detected early, the condition is treatable with penicillin, a widely available antibiotic. In the United States and other high-income nations, RHD has been almost entirely eradicated. However, in low- and middle-income countries, it impacts the lives of 40 million people, causing nearly 400,000 deaths a year.

“This technology has the potential to extend the reach of a cardiologist to anywhere in the world,” said Kelsey Brown, M.D., a cardiology fellow at Children’s National and co-lead author on the manuscript with Staff Scientist Pooneh Roshanitabrizi, Ph.D. “In one minute, anyone trained to use our system can screen a child to find out if their heart is demonstrating signs of RHD. This will lead them to more specialized care and a simple antibiotic to prevent this degenerative disease from critically damaging their hearts.”

The big picture

AI system that can detect RHD

The new AI system combines the power of novel ultrasound probes with portable electronic devices installed with algorithms capable of diagnosing RHD on echocardiogram.

Millions of citizens in impoverished countries have limited access to specialized care. Yet the gold standard for diagnosing RHD requires a highly trained cardiologist to read an echocardiogram — a non-invasive and widely distributed ultrasound imaging technology. Without access to a cardiologist, the condition may remain undetected and lead to complications, including advanced cardiac disease and even death.

According to the new research, the AI algorithm developed at Children’s National identified mitral regurgitation in up to 90% of children with RHD. This tell-tale sign of the disease causes the mitral valve flaps to close improperly, leading to backward blood flow in the heart.

Beginning in March, Craig Sable, M.D., interim division chief of Cardiology, and his partners on the project will implement a pilot program in Uganda incorporating AI into the echo screening process of children being checked for RHD. The team believes that a handheld ultrasound probe, a tablet and a laptop — installed with the sophisticated, new algorithm — could make all the difference in diagnosing these children early enough to change outcomes.

“One of the most effective ways to prevent rheumatic heart disease is to find the patients that are affected in the very early stages, give them monthly penicillin for pennies a day and prevent them from becoming one of the 400,000 people a year who die from this disease,” Dr. Sable said. “Once this technology is built and distributed at a scale to address the need, we are optimistic that it holds great promise to bring highly accurate care to economically disadvantaged countries and help eradicate RHD around the world.”

Children’s National Hospital leads the way

To devise the best approach, two Children’s National experts in AI — Dr. Roshanitabrizi and Marius George Linguraru, D.Phil., M.A., M.Sc., the Connor Family Professor in Research and Innovation and principal investigator in the Sheikh Zayed Institute for Pediatric Surgical Innovation — tested a variety of modalities in machine learning, which mimics human intelligence, and deep learning, which goes beyond the human capacity to learn. They combined the power of both approaches to optimize the novel algorithm, which is trained to interpret ultrasound images of the heart to detect RHD.

Already, the AI algorithm has analyzed 39 features of hearts with RHD that cardiologists cannot detect or measure with the naked eye. For example, cardiologists know that the heart’s size matters when diagnosing RHD. Current guidelines lay out diagnostic criteria using two weight categories — above or below 66 pounds — as a surrogate measure for the heart’s size. Yet the size of a child’s heart can vary widely in those two groupings.

“Our algorithm can see and make adjustments for the heart’s size as a continuously fluid variable,” Dr. Roshanitabrizi said. “In the hands of healthcare workers, we expect the technology to amplify human capabilities to make calculations far more quickly and precisely than the human eye and brain, saving countless lives.”

Among other challenges, the team had to design new ways to teach the AI to handle the inherent clinical differences found in ultrasound images, along with the complexities of evaluating color Doppler echocardiograms, which historically have required specialized human skill to evaluate.

“There is a true art to interpreting this kind of information, but we now know how to teach a machine to learn faster and possibly better than the human eye and brain,” Dr. Linguraru said. “Although we have been using this diagnostic and treatment approach since World War II, we haven’t been able to share this competency globally with low- and middle-income countries, where there are far fewer cardiologists. With the power of AI, we expect that we can, which will improve equity in medicine around the world.”

2023 with a lightbulb

The best of 2023 from Innovation District

2023 with a lightbulbAdvanced MRI visualization techniques to follow blood flow in the hearts of cardiac patients. Gene therapy for pediatric patients with Duchenne muscular dystrophy. 3D-printed casts for treating clubfoot. These were among the most popular articles we published on Innovation District in 2023. Read on for our full list.

1. Advanced MRI hopes to improve outcomes for Fontan cardiac patients

Cardiac imaging specialists and cardiac surgeons at Children’s National Hospital are applying advanced magnetic resonance imaging visualization techniques to understand the intricacies of blood flow within the heart chambers of children with single ventricle heart defects like hypoplastic left heart syndrome. The data allows surgeons to make critical corrections to the atrioventricular valve before a child undergoes the single ventricle procedure known as the Fontan.
(3 min. read)

2. Children’s National gives first commercial dose of new FDA-approved gene therapy for Duchenne muscular dystrophy

Children’s National Hospital became the first pediatric hospital to administer a commercial dose of Elevidys (delandistrogene moxeparvovec-rokl), the first gene therapy for the treatment of pediatric patients with Duchenne muscular dystrophy (DMD). Elevidys is a one-time intravenous gene therapy that aims to delay or halt the progression of DMD by delivering a modified, functional version of dystrophin to muscle cells.
(2 min. read)

3. New model to treat Becker Muscular Dystrophy

Researchers at Children’s National Hospital developed a pre-clinical model to test drugs and therapies for Becker Muscular Dystrophy (BMD), a debilitating neuromuscular disease that is growing in numbers and lacks treatment options. The work provides scientists with a much-needed method to identify, develop and de-risk drugs for patients with BMD.
(2 min. read)

4. First infants in the U.S. with specially modified pacemakers show excellent early outcomes

In 2022, five newborns with life-threatening congenital heart disease affecting their heart rhythms were the first in the United States to receive a novel modified pacemaker generator to stabilize their heart rhythms within days of birth. Two of the five cases were cared for at Children’s National Hospital. In a follow-up article, the team at Children’s National shared that “early post-operative performance of this device has been excellent.”
(2 min. read)

5. AI: The “single greatest tool” for improving access to pediatric healthcare

Experts from the Food and Drug Administration, Pfizer, Oracle Health, NVIDIA, AWS Health and elsewhere came together to discuss how pediatric specialties can use AI to provide medical care to kids more efficiently, more quickly and more effectively at the inaugural symposium on AI in Pediatric Health and Rare Diseases, hosted by Children’s National Hospital and the Fralin Biomedical Research Institute at Virginia Tech.
(3 min. read)

6. AAP names Children’s National gun violence study one of the most influential articles ever published

The American Academy of Pediatrics (AAP) named a 2019 study led by clinician-researchers at Children’s National Hospital one of the 12 most influential Pediatric Emergency Medicine articles ever published in the journal Pediatrics. The findings showed that states with stricter gun laws and laws requiring universal background checks for gun purchases had lower firearm-related pediatric mortality rates but that more investigation was needed to better understand the impact of firearm legislation on pediatric mortality.
(2 min. read)

7. Why a colorectal transition program matters

Children’s National Hospital recently welcomed pediatric and adult colorectal surgeon Erin Teeple, M.D., to the Division of Colorectal and Pelvic Reconstruction. Dr. Teeple is the only person in the United States who is board-certified as both a pediatric surgeon and adult colorectal surgeon, uniquely positioning her to care for people with both acquired and congenital colorectal disease and help them transition from pediatric care to adult caregivers.
(3 min. read)

8. First-of-its-kind holistic program for managing pain in sickle cell disease

The sickle cell team at Children’s National Hospital received a grant from the Founders Auxiliary Board to launch a first-of-its-kind, personalized holistic transformative program for the management of pain in sickle cell disease. The clinic uses an inter-disciplinary approach of hematology, psychology, psychiatry, anesthesiology/pain medicine, acupuncture, mindfulness, relaxation and aromatherapy services.
(3 min read)

9. Recommendations for management of positive monosomy X on cell-free DNA screening

Non-invasive prenatal testing using cell-free DNA (cfDNA) is currently offered to all pregnant women regardless of the fetal risk. In a study published in the American Journal of Obstetrics and Gynecology, researchers from Children’s National Hospital provided context and expert recommendations for maternal and fetal evaluation and management when cfDNA screening is positive for monosomy X or Turner Syndrome.
(2 min. read)

10. Innovation in clubfoot management using 3D anatomical mapping

While clubfoot is relatively common and the treatment is highly successful, the weekly visits required for Ponseti casting can be a significant burden on families. Researchers at Children’s National Hospital are looking for a way to relieve that burden with a new study that could eliminate the weekly visits with a series of 3D-printed casts that families can switch out at home.
(1 min. read)

11. Gender Self-Report seeks to capture the gender spectrum for broad research applications

A new validated self-report tool provides researchers with a way to characterize the gender of research participants beyond their binary designated sex at birth. The multi-dimensional Gender Self-Report, developed using a community-driven approach and then scientifically validated, was outlined in a peer-reviewed article in the American Psychologist, a journal of the American Psychological Association.
(2 min. read)

12. Cardiovascular and bone diseases in chronic kidney disease

In a study published by Advances in Chronic Kidney Disease, a team at Children’s National Hospital reviewed cardiovascular and bone diseases in chronic kidney disease and end-stage kidney disease patients with a focus on pediatric issues and concerns.
(1 min. read)

Yves d’Udekem, M.D., Ph.D.,

Evidence and expertise drive cardiac surgery innovation at Children’s National Hospital

Yves d’Udekem, M.D., Ph.D.,

“Our goal is to do the difficult and the impossible,” says Yves d’Udekem, M.D., Ph.D.

“Our goal is to do the difficult and the impossible,” says Yves d’Udekem, M.D., Ph.D., chief of Cardiac Surgery at Children’s National Hospital.

Dr. d’Udekem and the cardiac surgeons at Children’s National apply technical skill and expertise to offer renewed hope for the highest risk children with critical congenital heart disease, including those with single ventricle anomalies like hypoplastic left heart syndrome.

“When families have nowhere else to turn, they can turn to us,” he adds.

Why it matters

The cardiac surgery team has welcomed families from across the United States and around the world who seek experts in the care of these critical heart conditions. Their experience is building an important evidence base for better surgical approaches that will improve long-term outcomes for children with many different types of congenital heart disease, but especially for single ventricle conditions.

Innovation in cardiac surgery

  • Hybrid surgical strategy: Cardiac Surgeon Can Yerebakan, M.D., and Interventional Cardiology Director Joshua Kanter, M.D., are national leaders in the use of a hybrid surgical strategy for high-risk infants with single ventricle heart conditions. They can perform this procedure on babies as small as 1.1 kilograms. It allows critical time for the lungs and other organs to recover and get stronger after birth before the child undergoes more invasive procedures.
  • New uses for artificial hearts: d’Udekem showed proof-of-concept for the use of an artificial heart to give a child with a single ventricle the time for their own heart to recover rather than being transplanted. In this case, the child was supported by a left-ventricle assist device (LVAD) long term. As their own heart recovered, surgeons then performed successful procedures that seemed impossible to perform before.
  • Novel complex pulmonary artery reconstruction: Children’s National performs the most complex lobar and sub-lobar pulmonary artery reconstruction for children with complex pulmonary stenosis. Cardiac Surgeon Manan Desai, M.D., says the approach leverages interventional cardiac imaging and precision surgical techniques to correct stenosis in smaller lung arteries. This helps establish better right-sided pressure in the heart and likely reduces the chance of heart failure down the road.
  • Pediatric-focused advanced lung care and transplant: Children’s National is poised to become one of only a few locations in the United States to offer comprehensive care for children with complex lung conditions. In 2024, Cardiac Surgeon Aybala Tongut, M.D., will begin performing pediatric lung transplants as part of the hospital’s Advanced Lung Disease Program focused on the unique needs of children.

Children’s National leads the way

“It’s time to combine firsthand expertise and long-term outcomes from decades of congenital heart surgical procedures to refine our surgical techniques,” says Dr. d’Udekem. “We need to ensure patients with congenital heart disease, especially those with single ventricle heart defects, can thrive long term.”
animation showing MRI cardiac imaging

Soon, the Children’s National team plans to re-examine the effectiveness of different techniques for the Fontan procedure. They’ll compare an extracardiac approach against the older lateral tunnel procedure to determine how best to reduce long-term pressure on the heart by creating larger conduits and improving blood flow.

More education is needed to ensure valve repairs for children with congenital heart disease, including single ventricle conditions, which have a high rate of failure and require reoperation, are as successful as can be. The goal is to avoid the need for reoperation or replacement procedures. This is why Children’s National recently hosted the inaugural Valve Repair Symposium. It featured practical cases illustrated with intraoperative video, echocardiography and MR images to bring critical knowledge about pediatric heart valve repair to more people in the field.

Drs. Catherine Limperopoulos, Yao Wu and David Wessel

AHA’s Outstanding Research Award: Three generations of pediatric cardiac excellence

Drs. Catherine Limperopoulos, Yao Wu and David Wessel

Catherine Limperopoulos, Ph.D., Yao Wu, Ph.D., and David Wessel, M.D.

Children’s National Hospital is celebrating a remarkable milestone as three of its faculty members have been honored over 15 years with the American Heart Association’s Outstanding Research in Pediatric Cardiology Award. Yao Wu, Ph.D., became the latest researcher to earn the accolade for her groundbreaking work into congenital heart disease (CHD).

A research faculty member with the newly established Center for Prenatal, Neonatal & Maternal Health Research, Dr. Wu received the award specifically for her studies on the role of altered placental function, measured by advanced in utero imaging, and neurodevelopmental outcomes in toddlers with CHD.

Honored at the association’s annual meeting in Philadelphia, Dr. Wu returned to Children’s National to warm congratulations from her colleagues who had previously won the award: David Wessel, M.D., executive vice president and chief medical officer, and Catherine Limperopoulos, Ph.D., director of the new center.

“I am thrilled to pass the baton to one of our own,” Dr. Limperopoulos said. “Dr. Wu’s recognition speaks to the outstanding and innovative research happening at Children’s National among junior faculty who are focusing on advancing our understanding of congenital heart disease and its long-term neurodevelopmental outcomes.”

Why we’re excited

The prestigious award represents more than individual accomplishments; it symbolizes three generations of mentorship and collaboration at the hospital. In 2007, Dr. Wessel joined Children’s National to enhance the care of newborns across specialty services by expanding programs and research, with a focus on critically ill newborns with heart disease. He recruited and mentored Dr. Limperopoulos in 2010, who became one of his research partners and creator of the hospital’s Center for Prenatal, Neonatal & Maternal Health Research. Dr. Limperopoulos, in turn, recruited and mentored Dr. Wu, providing her with the tools to conduct advanced imaging on in-utero brains and placentas, as well as the development of children with CHD.

“Each one of us is in different phases of our careers, yet we are connected by our deep interest in advancing cardiac care for critically ill newborns,” Dr. Wessel said. “In this collaborative environment, we learn from each other to improve entire lifetimes for our patients.”

Dr. Wu said she believes in sharing scientific developments for the advancement of the entire medical community. “It was an honor to be chosen to join this esteemed club, which has a relentless focus on improving health outcomes,” she said.

Children’s National leads the way

The award winners shared five collaborations published in leading journals to contribute to the ongoing dialogue in the field and the innovative work happening at Children’s National:

screenshot from Congenital Heart Initiative (CHI) Registry Participant Timeline

Congenital Heart Initiative beat recruitment goals, kicked off patient-engaged studies in year three

The Congenital Heart Initiative (CHI) is celebrating its third year as the first global patient-powered registry for adults with congenital heart disease (CHD). In 2023, the registry surpassed recruitment targets and launched a data intake process to allow researchers from around the world to submit proposals for patient-centered research and programs around the critical questions for adults with CHD who had their hearts repaired in childhood.

What it means

By recruiting over 4,600 participants in all 50 states and 37 countries, the CHI is now the largest patient-powered registry for adults with congenital heart disease. This is the first time researchers and clinicians have been able to access this type of robust data set to help them better understand and address the needs of people with CHD as they continue to age. Even better, the registry’s mechanisms allow for routine feedback and input about priorities directly from the growing patient population.

“Patient-centered research organizations, not providers or universities, have the greatest ability to lead this charge and lay the foundation for future breakthroughs. The inspiring efforts of all participants to date gives me hope that the next generation of advances is within reach,” says Matthew Lewis, M.D., an adult congenital heart specialist and CHI-RON site PI from Columbia University Medical Center.

An ongoing sub-study of CHI uses PCORnet®, the National Patient-Centered Clinical Research Network, to better understand how gaps in care impact the adult patient experience with CHD. The CHI-RON study (PCORI RD-2020C2-20347) fills in these gaps by exploring three distinct data types: patient-reported outcomes, health insurance claims and electronic health records. The effort is led by Children’s National Hospital and Louisiana Public Health Institute.

This year, CHI also launched some of its first studies, focused on pregnancy, health disparities and long-term health care follow-ups. The first academic manuscripts about these studies are expected to publish in the next year.

Why it matters

Although nearly 2 million adults in the United States are living with a congenital heart defect — more adults than children in fact — it’s been historically difficult to gather data on these conditions and to identify patient needs.

As children born with CHD become adults, they have a lot of worry and uncertainty about their limitations and abilities to achieve what might be considered common adult milestones. The research made possible by this registry and the mechanisms to communicate findings to both the participants and the larger clinical community will make a big difference in quality of life and hope to provide more answers to these important questions.

The CHI related meetings have allowed a space where patients and researchers can come together to discuss research priorities.

“Once you go and look at things from the patient’s point of view, there is no going back. It is going to be something that will redefine you as a researcher and a provider,” says Rohan D’Souza, M.D., a maternal-fetal medicine specialist who is an active participant in a PCORI-funded maternal health consortium focused on reducing maternal morbidity and mortality in CHD patients (PCORI EACB-23293).

The patient benefit

Additionally, because people with CHD live all over the United States and the world, it can be hard for them to connect with each other to share common questions and experiences with clinicians and each other. The patient-driven registry engages participants and hopes to help make greater connections between people who live with CHD. A key registry partner, the Adult Congenital Heart Association (ACHA), helps create opportunities, such as virtual Coffee Hours, for people in the registry to weigh in on research priorities and share feedback about CHI’s work.

“The ACHA Cafe was born out of a need for connection,” says Aliza Marlin, who founded and organized the café project on behalf of the ACHA. “A virtual social hour, coffee optional, gave the ACHD community a safe space to come together. Using it as a conduit to the Congenital Heart Initiative gave us an empowered voice in our own futures. It’s the perfect example of social connection leading to transformative possibilities.”

What’s next

Anitha John, M.D., medical director of the Washington Adult Congenital Heart Program and an adult congenital cardiologist at Children’s National Hospital who leads CHI, says that the future looks bright for the registry and the vital information it can provide.

The new data intake process launched this year, she adds, gives anyone with an interest the ability to submit ideas for new grants, projects and studies. The team will also continue to engage with registry participants, researchers and the centers who provide care for people with CHD, all with the goal of finding more answers to the key questions about how to accomplish specific goals, such as improving mental health, the health care transition and overall quality of life for adults with CHD. For more information on how to get involved, please email ACHDresearch@childrensnational.org.

sonogram showing tetralogy of Fallot

Tetralogy of Fallot repair technique demonstrates low reoperation rates

Cardiac surgeons at Children’s National Hospital have used a uniform transventricular strategy for tetralogy of Fallot repair for more than 15 years. A large, retrospective study published in the Journal of Thoracic and Cardiovascular Surgery demonstrates that few patients who received a repair using this method required a reoperation to implant a pulmonary valve in the first 10 years after their primary repair surgery.

What it is

The study is one of the first to report statistically significant outcomes of the transventricular approach applied uniformly in a single institution. It provides tangible evidence of the short- and mid-term postoperative outcomes from 244 consecutive patients who underwent tetralogy of Fallot repair at Children’s National between 2004 and 2019. Infants received the repair between 42 and 106 days after birth.

Tetralogy of Fallot is a condition of several related congenital heart defects that occur due to abnormal development of the prenatal heart during the first eight weeks of pregnancy.

Why it matters

The data show that, at Children’s National, 96.7% of children who underwent tetralogy of Fallot repair within the first year of life using this transventricular approach were able to avoid having an additional surgery to receive a replacement pulmonary valve for up to a decade after their initial repair.

It also shows a benefit of this approach soon after birth. The authors believe that having the repair earlier (on average, 71 days after birth in this study) provides long-term benefits to the growth and development of both the brain and heart. The repair also protects the heart’s function over time by preventing the development of dangerous ventricular arrhythmias.

The big picture

Short- and mid-term post-surgical outcome data like the information presented in this study are an important indicator of the expertise, care quality and overall safety associated with the cardiac surgery team performing the procedure.

These findings provide critical insight into the effectiveness of specific treatment approaches for infants with tetralogy of Fallot and can help both clinicians and families better understand the benefits and risks of these procedures.

Read the full study in the Journal of Thoracic and Cardiovascular Surgery.