Cardiology & Heart Surgery

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.

Doctors from Children's National Hospital in Uganda

Children’s National brings AI into the RHD early diagnosis equation

In December of 2024, a team that included experts from Children’s National Hospital traveled to Uganda to continue work on a pilot program applying artificial intelligence (AI) to the diagnosis of rheumatic heart disease (RHD). Ugandan health care providers have been trained and equipped to acquire echocardiograms for their patients but lack expertise in consistently being able to diagnose RHD by detecting leaky heart valves. The team created a tool that uses AI to predict RHD by identifying leaky heart valves on handheld ultrasound devices, then prompts a referral for a full echocardiogram.

The goal is to find ways to help people in Uganda diagnose RHD early, before a patient is in need of surgery, and initiate antibiotics so their heart can return to normal. The team of researchers, including fellow Kelsey Brown, MD, helped to implement additional steps toward this goal in December. According to Dr. Brown, the results were excellent. After four days of seeing patients, over 450 people were screened. The AI tool has an 86% accuracy rating. After returning from Uganda, the research team plans to work on the AI tool and further improve its accuracy rating. Eventually, the vision is that this tool can roll out on a larger scale for more places around the world to access it.

Craig Sable, MD, Marius Linguraru, DPhil, MA, MSc, and Pooneh Roshanitabrizi, PhD, from our Sheikh Zayed Institute, who developed the AI algorithms, worked in partnership with the Rheumatic Heart Disease Research Collaborative (RRCU) in Uganda. This trip was also made possible thanks to a grant funded through the Children’s National Global Health Initiative. Special thank you to our AI partner, US2.AI, who made the deployment of the AI models onto a tablet that provided real-time results, possible.

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
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U.S. News & World Report voting

U.S. News & World Report badgeChildren’s National is ranked one of the top 10 pediatric hospitals in the nation by U.S. News & World Report. Our faculty and staff are proud of the impact made on the lives of children and families in our community. Your participation in the U.S. News & World Report annual reputational survey validates the quality of care we provide and reflects the mutual respect and trust we share as healthcare professionals.

How to determine your voting eligibility

Voting for the U.S. News & World Report Best Children’s Hospitals rankings can be done only through Doximity.

To participate, physicians must:

  • Be board-certified and meet the eligibility criteria for the voting categories.
  • For child and adolescent psychologists, your account must be up to date with your specialty and subspecialty correctly marked.
  • Be a credential-verified member of Doximity (you must have an active and claimed Doximity profile).
  • Have all certifications and board documents currently up-to-date in your Doximity profile.

View the full eligibility criteria

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  • You have to claim your profile on Doximity.com to participate in the online survey. If you have not yet claimed your Doximity profile, go to Doximity.com, and click “Find My Profile.”
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  • Verified Doximity members will receive an email inviting them to participate in the U.S. News survey.
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Your Doximity profile must have up-to-date licenses, certifications and board documents.

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Once registered, users wishing to participate in the online survey should:

  • Watch for an email from Doximity about the annual member survey.
  • Even if you don’t see the email, if you are a registered Doximity user, you can still vote by logging in to Doximity.com with your username and password during the voting period.
  • Once logged in, look for a U.S. News graphic or button on the homepage and click on it.
  • The survey asks users to name the hospitals that provide the best care in your respective specialty, without consideration to location or cost. Pediatric specialists will list 10 hospitals. The order in which you list the hospitals does not matter.

Please note: Children’s National Hospital is listed as “Children’s National Hospital Washington, DC” on the survey.

Visit Doximity’s FAQs if you have issues or questions about registration or claiming your profile.

How to cast your vote

In February 2025 when voting opens, all survey-eligible physicians will receive a notification on the Doximity app for Android or iOS. If you do not use the Doximity app, you will receive an email when voting opens.

  1. Log in to your Doximity account at doximity.com or via the mobile app.
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Cast your vote
Doctors performing cardiac surgery at Children's National Hospital

Socioeconomic disadvantage associated with higher long-term mortality after heart surgery

Doctors performing cardiac surgery at Children's National Hospital

Children who had heart surgery and come from less advantaged neighborhoods in the Washington, D.C., region are much more likely to die in the long term than those from neighborhoods with more wealth and opportunity.

Children who had heart surgery and come from less advantaged neighborhoods in the Washington, D.C., region are much more likely to die in the long term than those from neighborhoods with more wealth and opportunity. The finding was part of a presentation, Socioeconomic Disadvantage Is Associated with Higher Long-Term Mortality After Cardiac Surgery, presented by Jennifer Klein, MD, MPH, cardiologist at Children’s National Hospital, during the Society of Thoracic Surgeons (STS) Annual Meeting in Los Angeles.

What is it?

Clinical and demographic data were collected for 2,546 people who underwent corrective surgery for congenital heart disease over a 15-year period (2007-2022) in a single-center retrospective analysis. Using the Child Opportunity Index (COI), an index that uses environmental/health, educational, and socioeconomic domains to assess patients’ neighborhoods, the two lowest COI quintile neighborhoods were designated as “disadvantaged” while the two highest COI quintile neighborhoods were designated as “advantaged.” Multivariable mixed model analyses were conducted to understand the factors associated with overall mortality.

The research showed that patients from disadvantaged neighborhoods suffered in a great proportion both overall mortality [n=168 (13.6%) vs 66 (8.4%), p< 0.001] and major complications [n=168 (13.6%) vs 81 (10.3%), p< 0.001]. The positive association between neighborhood disadvantage and long-term mortality was maintained in stepwise logistic regression multivariable analysis after controlling for differences between surgical complexity and other clinical risk factors.

What it means

“Previous research has shown disparities like this,” says Dr. Klein. “What’s significant here is that the disparity for children from disadvantaged neighborhoods grows over time. That means corrective interventions won’t be implemented in the operating room or within the first 30 days after surgery. They need to happen in a cardiologist’s office, in the schools, and in the community long after a child goes home from the hospital.”

The findings from this particular study are also noteworthy as they are the first to include significantly greater numbers of patients who are more likely to experience this risk (48.5% of the study group). Previous research has sought to look at this research question but analysis may have been skewed by an over-representation of socioeconomically advantaged patients.

What’s next

Differences in mortality risk continue to grow greater as more time passes, the authors note, indicating that the disparity is not a product of surgical technique or disparities in care delivery at the time of surgery.

Instead, their outcomes are being influenced by factors outside the operating room. This opens a new avenue of research focused on identifying the “why.”

“What happens after they go home?” Klein asks. “Can they access medications? Do they come back for follow-up appointments? Can they afford food?”

Read the abstract, Socioceconomic Disadvantage Is Associated with Higher Long-Term Mortality After Cardiac Surgery, which was presented during a speed session at the STS Annual Meeting. A full manuscript will be published soon.

Denver Brown

The link between metabolic acidosis and cardiovascular disease in children with CKD

Denver Brown

Denver D. Brown, MD, nephrologist at Children’s National Hospital, presented at Kidney Week 2024 on the connection between metabolic acidosis and cardiovascular disease risk in children with chronic kidney disease (CKD).

Denver D. Brown, MD, nephrologist at Children’s National Hospital, presented at Kidney Week 2024 on the connection between metabolic acidosis and cardiovascular disease risk in children with chronic kidney disease (CKD). This research aimed to investigate whether untreated metabolic acidosis could potentially contribute to cardiovascular outcomes in children with CKD, a group at high risk for cardiovascular disease and death from cardiovascular complications. Dr. Brown explains her motivation, findings and future directions for this critical research.

Q: Why did you choose to research this topic?

A: My interest in this area stems from my research interest in pediatric CKD outcomes, with a specific focus on the consequences of metabolic acidosis as well as my larger passion which is to improve the quality and longevity of life for children with CKD. There are several adult focused studies investigating theorized links between untreated metabolic acidosis and poor outcomes such as CKD progression, worse bone health/growth and higher cardiovascular risk. However, in the pediatric CKD population, the consequences of chronic metabolic acidosis remain largely unexplored but is of importance since data shows that nearly one third of children with metabolic acidosis are not receiving treatment to correct their acidosis.

Cardiovascular disease is the number one cause of death in children with CKD. Even though overt cardiovascular disease often does not manifest until adulthood, we do see risk factors emerging during childhood such as high blood pressure and abnormal cholesterol levels. So, if metabolic acidosis contributes to cardiovascular disease risk, it’s crucial to identify and treat it — especially since metabolic acidosis is very treatable

This research was in collaboration with the Chronic Kidney Disease in Children (CKiD) study, which is the largest cohort study of pediatric CKD across North America. It provided robust data on laboratory values, blood pressure, cardiovascular measurements and echocardiograms which allowed me to look deeper into the potential cardiovascular implications of metabolic acidosis.

Q: Where do you see this research going?

A: My ultimate goal is to conduct clinical trials focused on the pediatric CKD population. Children are not well represented in CKD trials as pediatric CKD is relatively rare, making recruitment for studies challenging. However, we can’t keep applying adult data to children because the causes and manifestations of CKD in kids are different.

It is my hope that this research serves as evidence that can be used for a pediatric clinical trial that investigates the benefits of alkali therapy, the treatment for metabolic acidosis. I envision studying how alkali therapy impacts not only cardiovascular outcomes but also growth and other important health domains. The data gathered from my study could ultimately be used in a multi-site trial, aiming to test alkali therapy on a broader scale across various pediatric CKD centers.

Q: Is any work being done between nephrologists and cardiologists to address this issue?

A: This specific study was more exploratory. In adults, the data on the link between metabolic acidosis and cardiovascular disease is mixed. Some studies suggest a connection, while others find no such effect when treating metabolic acidosis. My current work is focused on gathering data to determine if there’s a potential link in the pediatric population and whether it should be examined further in a future trial.

I haven’t collaborated directly with cardiologists on this research. However, this could lead to collaboration with cardiologists down the line.

Q: How is Children’s National Hospital leading the way in this research?

A: Although my research data wasn’t exclusively from Children’s National, the hospital played a pivotal role in the CKiD study, both as an enrollment site and through the involvement of Marva Moxey-Mims, M.D., chief of Nephrology at Children’s National, who played a key role in the CKiD study design and initiation.

Children’s National actively participates in, and encourages, novel and innovative research studies. Being at an institution that prioritizes and contributes to research that advances the health of children has been instrumental in my research career.

Pericardial port for pediatric pacemaker delivery

Supporting healthier hearts

The Children’s National Heart Center is leading the way to find new and better treatments for cardiac problems as early as possible, during pregnancy and just after birth.

These critical stages are vital for a child’s lifelong heart health. “The innovations we are pursuing have the potential to transform the landscape of cardiac treatment,” says Wayne Franklin, M.D., F.A.C.C., Heart Center senior vice president.

“By focusing on the earliest stages of life, we can significantly alter the trajectory of children’s heart health, creating a lifetime of possibilities.”

Mending a Broken Heart

Abby with her sister and parents

Abby with her sister and parents.

Abby, who just turned 1, is a smiley baby who loves to play peek-a-boo with her sister, Ruby. “We marvel that she is perfectly healthy,” says her father, Dan. He and wife Kelsey love to linger over ordinary moments. Her given name, Abigail, means “a father’s joy.”

When Kelsey was 18 weeks pregnant, she and Dan learned their baby had signs of heart injury, which led to a dangerous rhythm problem called “complete heart block.” The previous year, their infant son died from the same condition, which was discovered too late. The family prepared for another loss. But early detection of the problem and advanced care that started in the womb made all the difference for Abby. Children’s National prenatal cardiology experts began monitoring Abby’s development from the earliest possible moment and were able to intervene before devastating injury occurred.

Before Abby’s diagnosis, in light of the previous pregnancy, Kelsey enrolled in a clinical trial. The research sought a better way to identify and treat the heart condition Abby was at risk for. Anita Krishnan, M.D., a pediatric cardiologist and clinician scientist, met the family during their initial visit and arranged a monitoring plan that included frequent visits to make sure Abby’s heart was working normally. Soon after Kelsey’s first visit, doctors noted a problem.

Mary Donofrio, M.D., F.A.A.P., F.A.C.C., F.A.S.E., a leading pediatric and fetal cardiologist and The Van Metre Companies Professor of Fetal Cardiology, led the team that initiated lifesaving in utero therapy, followed Abby’s progress in the womb and planned for her arrival. The goal was to extend the pregnancy for as long as possible so she would survive birth and the heart surgery that would follow.

Abby’s prognosis improved as weeks passed. As a newborn, she would be a candidate for an infant pacemaker the size of a penny. It would help regulate her heartbeat and enable her to live a “normal” life.

Pericardial port for pediatric pacemaker delivery

Pericardial port for pediatric pacemaker delivery, developed by Dr. Charles Berul and team.

Kelsey and Dan met with Charles Berul, M.D., emeritus chief of Cardiology and The Van Metre Companies Professor of Cardiology, and his team. There was uncertainty about whether Abby’s heart was too damaged for the pacemaker to work, but Dr. Berul, who has spent decades refining designs for this type of device, expressed confidence. Abby would be the world’s 27th infant, and the fifth at Children’s National, to have one implanted.

“To have him say, ‘We’ve developed this device, we know what we’re doing, all of the other babies who have had this are doing well and we’ll be right here in the room with you,’ was pretty incredible,” Dan says.

Kelsey’s monitoring in the clinical trial and the innovative therapy that started before birth likely helped Abby survive until she was born at 32 weeks at MedStar Washington Hospital Center. Dr. Donofrio and the Children’s National care team were in the delivery room and rushed Abby to our Cardiac Intensive Care Unit. Dr. Donofrio arranged for mom and daughter to pass in the hall on the way. “I heard her cry and felt relief for the first time,” Kelsey says.

Abby’s pacemaker enabled her heart to beat properly on its own. She soon moved to our Neonatal Intensive Care Unit. In two months, she went home with her family. Kelsey and Dan monitor her pacemaker with a handheld device that sends reports to her team at the hospital.

“We’re lucky to have doctors nearby who are at the forefront of this lifesaving research. Children’s National took care of us with a great deal of humanity. Now we can focus on being a family,” says Dan.

Read more stories like this one in the latest issue of Believe magazine.

collage of news logos

Children’s National in the News: 2024

collage of news logosIn 2024, Children’s National Hospital continued to make remarkable strides across diverse areas of pediatric medicine, from groundbreaking technological innovations to critical health advocacy. The following compilation showcases ten significant stories that demonstrate the breadth and depth of the hospital’s impact, as featured in major national news outlets including NBC Nightly News, CNN, The Washington Post, The New York Times, NPR, The Today Show, Healio, and POLITICO. Delve into our 2024 news highlights for more.

1. World’s smallest pacemaker gives new hope to babies with heart defects

Charles Berul, M.D., and a patient family talk about the pill-sized pacemaker that saved the life of Abby, an infant born with deadly heart defects. (NBC Nightly News)

2. ‘A $10 death trip’: Fentanyl is killing teens. Meet one fighting for his life

Sivabalaji Kaliamurthy, M.D., addiction psychiatrist and director of the Addictions Program, spoke to CNN about the impact of drug addiction on teen health and the lack of resources available to treat opioid use disorder. (CNN)

3. Health panel urges interventions for children and teens with high BMI

Susma Vaidya, M.D., M.P.H., associate medical director of the IDEAL Clinic, shared her concerns about childhood obesity treatment recommendations issued today by a leading panel of independent U.S. health experts. (The Washington Post)

4. An Rx for food? Doctor’s offices offer groceries to those in need

Shideh Majidi, M.D., M.S.C.S., and Emily Frymark, clinical dietitian, spoke about how the food pharmacy, created in partnership with the Capital Area Food Bank, benefits patients with diabetes and other chronic conditions. (The Washington Post)

5. First patient begins newly approved sickle cell gene therapy

Kendric Cromer, a 12-year-old boy being treated at Children’s National Hospital, became the first person in the world with sickle cell disease to begin a commercially approved gene therapy that may cure the condition. “This is a big effort,” says David Jacobsohn, M.D., ScM, M.B.A. (The New York Times)

6. ‘We created this problem’: A pediatric surgeon on how gun violence affects children

Mikael Petrosyan, M.D., associate chief of General and Thoracic Surgery, discusses the stress medical staff face when treating young victims of gun violence. (NPR)

7. 7th grade boy rings bell after final round of chemotherapy

Landon, an 11-year-old patient, rang the bell at Children’s National Hospital with family, friends, doctors and nurses cheering after finishing his final round of chemotherapy. (The Today Show)

8. Study: One in three adolescents experience ‘period poverty’

Monika Goyal, M.D., M.S.C.E., pediatric emergency medicine specialist and co-director of the Center for Translational Research, emphasized the need for awareness in addressing period poverty in teenagers and young adults. (Healio)

9. The AI assurance labs are coming

Kolaleh Eskandanian, Ph.D., M.B.A., P.M.P., vice president and chief innovation officer, participates in a panel discussion covering AI data collection, associated risks, reliance and other topics related to artificial intelligence. (POLITICO)

10. First day of a ‘new life’ for a boy with sickle cell

Children’s National patient Kendric Cromer, 12, became one of the first children ever to be treated with a newly approved gene therapy that will free him from the sickle cell disease that has stolen his childhood. (The New York Times)

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.

2024 with a lightbulb instead of a zero

The best of 2024 from Innovation District

2024 with a lightbulb instead of a zero2024 marked another groundbreaking year for Children’s National Hospital, showcasing remarkable advances across the spectrum of pediatric medicine, research and healthcare innovation. From pioneering surgical procedures to breakthrough artificial intelligence applications, the institution continued to push the boundaries of what’s possible in children’s healthcare. Read on for our list of the most popular articles we published on Innovation District in 2024.

1. Prenatal COVID exposure associated with changes in newborn brain

A study led by researchers at Children’s National Hospital showed that babies born during the COVID-19 pandemic have differences in the size of certain structures in the brain, compared to infants born before the pandemic. The findings suggest that exposure to the coronavirus and being pregnant during the pandemic could play a role in shaping infant brain development.
(3 min. read)

2. Children’s National Hospital again ranked among the best in the nation by U.S. News & World Report

Children’s National Hospital was ranked as a top hospital in the nation by the U.S. News & World Report 2024-25 Best Children’s Hospitals annual rankings. This marks the eighth straight year Children’s National has made the Honor Roll list. The Honor Roll is a distinction awarded to only 10 children’s hospitals nationwide.
(2 min. read)

3. Children’s National performs first ever HIFU procedure on patient with cerebral palsy

In January 2023, a team of multidisciplinary doctors performed the first case in the world of using bilateral high intensity focused ultrasound (HIFU) pallidotomy on Jesus, a 22-year-old patient with dyskinetic cerebral palsy. The procedure is part of a clinical trial led by Chima Oluigbo, M.D., pediatric neurosurgeon at Children’s National Hospital.
(3 min. read)

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

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. The device that enables autonomous, hands-free ultrasound scans to be performed anywhere, by any user.
(2 min. read)

5. First-of-its-kind pilot study on the impacts of Lyme disease in pregnancy and infant development

Understanding the effects of Lyme disease on the developing fetal brain is essential to ensure timely prenatal and postnatal treatments to protect the fetus and newborn. In response to this need, Children’s National Hospital is leading a pilot study to establish the groundwork needed for a larger study to determine the effect of in utero exposure to Lyme disease on pregnancy and early childhood neurodevelopmental outcomes.
(3 min. read)

6. Earliest hybrid HLHS heart surgery kids thrive 5 years later

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. 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.
(1 min. read)

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

Children’s National Hospital 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 oversees the full spectrum of heart care services including cardiac imaging and diagnostics, interventional cardiology, electrophysiology, cardiac anesthesia, cardiac surgery and cardiac intensive care.
(2 min. read)

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

By pioneering artificial intelligence (AI) innovation programs at Children’s National Hospital, Marius George Linguraru, D.Phil., M.A., M.Sc., 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.
(4 min. read)

9. Evidence review: Maternal mental conditions drive climbing death rate in U.S.

Painting a sobering picture, a research team led by Children’s National Hospital culled years of data demonstrating that maternal mental illness is an under-recognized contributor to the death of new mothers. They called for urgent action to address this public health crisis.
(3 min. read)

10. Nathan Kuppermann, M.D., M.P.H., named chief academic officer and chair of Pediatrics

Children’s National Hospital appointed Nathan Kuppermann, M.D., M.P.H., as its new executive vice president, chief academic officer and chair of Pediatrics. In this role, Dr. Kuppermann oversees research, education and innovation for the Children’s National Research Institute as well as academic and administrative leadership in the Department of Pediatrics at George Washington University School of Medicine & Health Services.
(2 min. read)

11. First global clinical trial achieves promising results for hypochondroplasia

Researchers from Children’s National Hospital presented findings from the first clinical trial of the medication vosoritide for children with hypochondroplasia – a rare genetic growth disorder. During the phase 2 trial, researchers found vosoritide increased the growth rate in children with hypochondroplasia, allowing them to grow on average an extra 1.8 cm per year.
(2 min. read)

12. Pioneering research center aims to revolutionize prenatal and neonatal health

Since its establishment in July 2023, the Center for Prenatal, Neonatal & Maternal Health Research at Children’s National Hospital has gained recognition through high-impact scientific publications, featuring noteworthy studies exploring the early phases of human development.
(3 min. read)

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.

Pulse oximiter on baby's foot

AAP updates newborn screening recommendations used to detect critical CHD

The American Academy of Pediatrics (AAP) has updated their clinical recommendations for a crucial heart screening protocol for newborn infants. The simple, noninvasive screening using pulse oximetry has been part of the U.S. Recommended Uniform Screening Panel since 2011. Today, it is a required part of newborn screening in all 50 states.

A clinical report containing the updates was published in the Pediatrics January 2025 edition (online December 16, 2024). The report, “Newborn Screening for Critical Congenital Heart Disease: A New Algorithm and Other Updated Recommendations,” includes endorsement of several new updates for health care providers as well as some other key takeaways from the first 14 years of national screening implementation.

Protocol updates reduce time from screening to intervention

The AAP recommendations refine the already successful protocol to ensure the screening is applied consistently, accurately and efficiently. Changes include:

  • A more simplified CCHD screening algorithm that eliminates a second verification re-screen so treatments can start sooner when intervention is urgent.
  • Oxygen saturation measurements of 95% or greater in both the right hand and either foot for an infant to pass. Previously 95% or greater oxygen saturation measurements in the right hand or either foot would pass.

A lifesaving unintentional benefit

The report also highlights an important, unintended benefit of pulse-oximetry screening that became evident after long-term implementation: The screening protocol also detects critical noncardiac conditions such as sepsis and pneumonia that benefit from early identification and treatment in vulnerable newborns. In fact, the authors note that for every case of critical congenital heart disease detected, four or five cases of infections or respiratory causes of low oxygen saturation are identified.

Recommendations for the next decade

The clinical report authors also note several recommendations for continued implementation of the screening algorithm.

  • Screening with pulse oximetry is best when paired with fetal ultrasounds and newborn examination. It should not be used alone to determine whether an infant has critical congenital heart disease.
  • Data collection, data sharing and improved access to care, including electronic data exchanges and stronger collaborations between birth hospitals and public health programs, are critical for these screening protocols to serve as tools to improve outcomes for children born with congenital heart disease.

“The earlier we can detect these conditions, the earlier we can treat these babies during their first days of life,” said Gerard R. Martin, M.D., M.A.C.C., F.A.H.A., F.A.A.P., senior author and pediatric cardiologist at Children’s National Hospital. “The timely coordination of care saves lives and has proven to be cost-efficient. The routine and uniform use of screening at every medical center is essential to ensure equity. We want all newborns born with critical congenital heart disease to benefit from screening no matter where they were born.”

Children’s National leads the way

Dr. Martin and colleagues across the country continue work to research and refine the algorithm with a focus on standardizing the application for more uniform results and raising awareness of the need for continued collaboration and cross-institutional data sharing to improve outcomes nationwide.

Since 2009, Dr. Martin and nurses at Children’s National have been part of the national cohort of clinicians who advocate for this screening for newborns in every birthing hospital. Findings from long-term implementation studies conducted by Children’s National and Holy Cross Health in Maryland have helped further refine the algorithm and establish the scientific evidence for its benefits and effectiveness.

Read the AAP’s press release about the updates: AAP updates recommendations on use of pulse oximetry to screen newborns for critical congenital heart disease.

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

the CICU telehealth command center at Children's National

New evidence: Virtual and AI support predict and prevent cardiac arrest

the CICU telehealth command center at Children's National

An evolving, continuous surveillance telecritical care model in the pediatric Cardiac Intensive Care Unit (CICU) at Children’s National Hospital has demonstrated early findings pointing to its ability to act as an additional virtual layer of safety for patient care that supports bedside providers by identifying concerning health trends based on a patient’s data.

Children who are hospitalized with congenital heart disease are more likely to experience cardiac arrest than children without cardiovascular diseases. Though these children are more likely to survive cardiac arrest today than a decade ago thanks to improvements in treatment options, survival after a cardiac arrest while in the hospital is still low. Additional solutions to minimize this serious complication are sorely needed.

An evolving, continuous surveillance telecritical care model in the pediatric Cardiac Intensive Care Unit (CICU) at Children’s National Hospital has demonstrated early findings pointing to its ability to act as an additional virtual layer of safety for patient care that supports bedside providers by identifying concerning health trends based on a patient’s data. The model aims to minimize cardiac arrest, ensure clear and effective communication, support escalation of care when appropriate and – simultaneously – be minimally disruptive to the bedside teams’ workflow.

What this means

The Board of Visitors Telehealth Command Center, housed within the CICU at Children’s National, recently reported its initial experience after its first four years of operation, successfully conducting 18,171 virtual surveillance activities on children admitted to its CICU –  analyzing data from remote monitoring, video camera feed from patient rooms, data from electronic medical records and an artificial intelligence (AI) prediction tool dashboard. This work led to 248 critical communications with bedside teams, who subsequently provided interventions that may have prevented or decreased the severity or length of time of a patient’s cardiac arrest.

This study showed that the models tested in this large dataset have successfully blended AI and remote clinician expertise to capture concerning trends in the health of critically ill pediatric patients and then share vital information with bedside care providers. The study also shows the importance of adapting any telecritical care system to ensure it works in concert with highly trained professionals. These professionals rightly remain the first line of defense against any concerning trend in a patient’s status.

Children’s National leads the way

This is the first report in the pediatric critical care setting using a continuous care model to support a pediatric CICU to prevent cardiac arrest in children with critical heart disease. Most previous reports of telecritical care in children describe a model based on physician-to-physician communication used to connect rural and isolated populations or international cases, with clinical expertise provided from a remote distance.

What’s next

  • Ongoing research is being conducted to explore direct connections between tele-critical care communications and patient outcomes, such as reducing cardiac arrest in children after congenital heart surgery.
  • Continued refinement of virtual surveillance workflows and AI tools will allow for earlier detection, communication and intervention – in the hopes of identifying concerning trends earlier and intervening sooner.
  • Development of automated triggers for virtual surveillance and communications, helped by more AI tools, to remove the need for the personal assessment of a physician or nurse at the tele-critical care unit to trigger communications.

Read the study in Telemedicine & e-Health: Pediatric Tele-Critical Care: Initial Experience with a Continuous Surveillance Model Aiming to Prevent Cardiac Arrest in Children with Critical Heart Disease.

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.

Title slide from Dr. Hershenson's webinar

CME Webinar: Pre-participation Cardiac Screening of Teenage Athletes: Goals, Challenges and Pitfalls

In this webinar, Jared Hershenson, M.D., pediatric cardiologist and medical director of Cardiac Exercise and Rehabilitation at Children’s National Hospital, discussed the importance, methods, challenges and recommendations of pre-participation cardiac screening, as well as secondary prevention and eligibility recommendations for athletes with known congenital heart disease.

Key takeaways

  • Importance of cardiac screening: Although sudden cardiac death in young athletes is rare, its impact is devastating, and screening aims to prevent such occurrences.
  • Causes of sudden cardiac death: Key causes include arrhythmia syndromes, cardiomyopathies, congenital coronary abnormalities and other undiagnosed congenital heart diseases.
  • Screening methods: Screening involves history and physical exams, with forms based on AHA and AAP guidelines, and may include ECGs and other tests, although these methods have limitations.
  • Challenges in screening: The sensitivity and specificity of pre-participation exams are low, and there is a lack of uniformity in how screenings are conducted, leading to potential false positives and negatives.
  • Debate on ECG screening: While ECG screening can improve sensitivity and specificity, it also has issues like false positives, which can lead to unnecessary anxiety and additional testing.
  • Secondary prevention: Secondary prevention focuses on having emergency action plans and AEDs in schools to manage sudden cardiac arrest effectively, reducing the risk of death and complications.
  • Eligibility recommendations: Guidelines for athletes with congenital heart disease emphasize individualized assessments to determine safe participation in sports, but there is a need to shift the focus to promoting physical activity rather than restricting given the long-term benefits of exercise and the low risk of sudden cardiac events.
  • Shared decision making: Shared decision making involves discussing the benefits and risks of sports participation with patients and their families, ensuring informed decisions about participation in physical activities.

More information

  • For more information on this webinar, as well as access to the presentation slide deck, visit our website.
  • To register for future CME opportunities or view past presentations, visit childrensnational.org/Webinars.
photograph of a heart and stethoscope

Study offers quality of life insights for adults with congenital heart disease

photograph of a heart and stethoscope

This research, published today in JAMA Network Open, marks a significant step forward in making better information available for the 1.5 million adults in the United States who were born with CHD.

For the first time, adults living with congenital heart disease (CHD) now have valuable insights into their long-term quality of life through data from the Congenital Heart Initiative (CHI). CHI is the nation’s first and largest patient-focused registry for adults with CHD and released its first study involving over 4,500 participants from all 50 states.

This research, published today in JAMA Network Open, marks a significant step forward in making better information available for the 1.5 million adults in the United States who were born with CHD.

“Studies like this that leverage actual patient voices and experiences help us get a better sense of how to advise, support and treat people with CHD as they age,” says Anitha John, M.D., Ph.D., director of the Washington Adult Congenital Heart program at Children’s National Hospital and senior author of the study. “Also, researchers get a clearer picture of the questions that need to be answered to make sure they have the best quality of life possible.”

The study also demonstrates two of the most successful models of current promising trends in clinical research:

  • The power of patient engagement throughout the research process, including design and implementation.
  • The impact of team science, highlighting the benefits of partnerships between patients, researchers and clinicians.

Key highlights include:

  • Many participants (88%) reported having one or more additional health issues (comorbidities).
    • 33% had arrhythmias (irregular heartbeat).
    • 35% had mood disorders, including depression or anxiety.
  • Quality of life is good or better for 84% of people who completed quality of life reporting measures, regardless of the type of congenital heart condition.
  • People with more complex congenital conditions were less likely to meet physical activity recommendations — an important finding with immediate impact.

Treatments for children born with congenital heart disease have improved so significantly in the last two decades that life expectancy continues to increase as well.

“There are now more adults living with congenital heart disease than there are children with CHD,” says Scott Leezer, patient co-principal investigator for the Congenital Heart Initiative registry and co-author of the study. “However, a significant gap remains in what we know about the adult CHD population. As an adult CHD patient, I was excited to contribute to creating this registry, bringing more answers to people like me who want to know how our unique hearts impact our bodies and quality of life over time.”

The authors note that the study’s findings and the registry data currently have a few limitations. First, the registry only contains patient-reported outcomes and no clinical data. The first sub-study of the CHI, the CHI-RON study, addresses this challenge by incorporating additional data sources for a subset of consenting CHI participants.

Additionally, recall bias, underlying neurocognitive challenges and survey fatigue, may have limited participation in the CHI to a smaller subset of adults with CHD. Efforts are underway to develop methods for people with congenital heart disease who have neurodevelopmental deficits or other disabilities to engage in the registry.  The CHI is temporarily closed to new registrants as the study team redesigns the study to better align with the needs of the community.

“We are grateful for everyone who joined this registry, answered survey questions and shared their experiences,” says Thomas Carton, Ph.D., chief data officer at Louisiana Public Health Institute and study co-author. “The CHI registry is a big step forward for adults with CHD, but also can serve as a model for how to bring together physicians, researchers and patients as active participants in care, research and advocacy.”

As the registry grows in the future, it will focus on increasing diversity of participants, developing additional partnerships with other organizations, continued innovation in data usage and improved community engagement, all with the goal of guiding future research that will ultimately improve quality of life for all adults with CHD.

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

2024-25 US News Badges

Children’s National again ranked among the best in the nation by U.S. News & World Report

2024-25 US News BadgesChildren’s National Hospital in Washington, D.C., was ranked as a top hospital in the nation by the U.S. News & World Report 2024-25 Best Children’s Hospitals annual rankings. This marks the eighth straight year Children’s National has made the Honor Roll list. The Honor Roll is a distinction awarded to only 10 children’s hospitals nationwide.

This year, U.S. News ended ordinal rankings on its Honor Roll. Instead of assigning a numerical rank from 1 to 10, all hospitals on the Honor Roll will be recognized as having attained the highest standards of care in the nation.

In addition, Children’s National tied for #1 pediatric hospital in the Mid-Atlantic region, which includes New York, New Jersey, Delaware, Pennsylvania, the District of Columbia, West Virginia and Virginia. It’s also best in the Mid-Atlantic in Neonatology.

For the fourteenth straight year, Children’s National ranked in 10 specialty services. New this year, U.S. News included behavioral health as a service line in the rankings. Since it’s the first year, there are no ordinal rankings for behavioral health, but the Children’s National program was named one of the top 50 programs in the country.

“In my first year here, I witnessed what makes Children’s National so special — our commitment to collaboration, empowering one another, and charting a bold path forward for pediatric care,” said Michelle Riley-Brown, MHA, FACHE, president and chief executive officer of Children’s National. “I’m proud U.S. News again recognized Children’s National as one of the top in the nation and the highest-ranked pediatric hospital in D.C., Maryland and Virginia. Together, we’ll continue to push the boundaries of care, research and innovation to make a difference for those who matter most — the kids.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals and recognizes the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News.

“For nearly two decades, U.S. News has published Best Children’s Hospitals to empower the parents and caregivers of children with complex medical needs,” said Ben Harder, chief of health analysis and managing editor at U.S. News. “Children’s hospitals appearing on the U.S. News Honor Roll have a track record of delivering unparalleled specialized care.”

The bulk of the score for each specialty service is based on quality and outcomes data. The process includes a survey of relevant specialists across the country, who are asked to list hospitals they believe provide the best care for patients with the most complex conditions.

The Children’s National specialty services that U.S. News ranked in the top 10 nationally are:

The other four specialties ranked among the top 50 are Behavioral Health, Cardiology and Heart Surgery, Pulmonology and Lung Surgery, and Urology.