The Children’s National Heart Center team led activities designed to encourage skin-to-skin contact between parents and infants in the Cardiac Intensive Care Unit and Heart and Kidney Unit.
Clinicians at Children’s National Hospital and Children’s Hospital Orange County are leading a nationwide event to encourage families to practice more skin-to-skin, or kangaroo, care with newborn infants who have congenital heart disease, including throughout hospitalization.
Thirty-one hospitals across the United States will participate in this congenital heart disease focused “Skin-to-skin-a-thon,” that will include family and clinical care provider activities and education throughout pediatric cardiac intensive care units and step-down units.
The event will celebrate the tremendous benefits that research shows both families and infants gain from physical contact early in life.
Early skin-to-skin care has been shown to:
Reduce stress in both baby and the parent
Help with baby’s physiologic stability including regulating vital signs like temperature, heart rate, and blood pressure
Provide infant pain relief
Improve infant digestion and weight gain
Support good sleep/wake cycles in babies.
Increase oxytocin for mothers, which can help improve milk production/support breastfeeding
Most studies showing these benefits have included pre-term babies or those born after a healthy term. The idea of encouraging family skin-to-skin care in the hospital setting has been widely adopted in neonatal intensive care units but is not done routinely in cardiac intensive care units. One study estimated that only 6% of parents whose babies were hospitalized for congenital heart disease reported any skin-to-skin care during their stay, with most stays averaging 22 days.
“Research shows so many benefits for all infants and their parents — and our congenital heart newborns stand to gain even more from this type of contact, but often receive it far less,” says Sarah Schlatterer, MD, PhD, medical director of Neurocardiac Critical Care at Children’s National. “This awareness effort is designed to help families understand how to do this safely and also empower our bedside care providers to encourage skin-to-skin care as much as they can every day.”
The event overall is inspired and supported by the Cardiac Newborn Neurodevelopmental Network SIG of the Cardiac Neurodevelopmental Outcomes Collaborative, who planted the seed of the idea and assisted with dissemination of information and coordinating between participating hospitals.
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An 11-year-old boy is the first in the world to have an artificial heart valve replaced with a live tissue valve from a donated heart through a partial heart transplant. The procedure took place at Children’s National Hospital in Washington, D.C. The successful surgery, performed by the cardiac surgery team, is also the region’s first partial heart transplant.
“I am honored this family trusted our hospital and our team’s expertise to perform this life-changing first-of-its-kind procedure for Preston,” says Cardiac Surgery Chief Yves d’Udekem, MD, PhD. “I look forward to hearing about all the new activities and adventures he and his family can do once he is completely recovered from surgery.”
“Everyone is ecstatic with his progress so far,” says Lauren Porter, who is the patient’s mother. “We hope having this surgery will give him a lot more freedom to do the things he loves in his life, and we hope that by sharing our story we are helping to make procedures like this more available to kids who need them in the future.”
Artificial heart valves are the standard of care for a failing valve in a child born with congenital heart disease. But Dr. d’Udekem says they are exceptionally difficult in children. First, a traditional artificial tissue valve lasts only about a decade, so children like Preston who have their first valve inserted before age 2 will inevitably face at least two to three additional open-heart surgeries before age 40. Additionally, just like adults, an artificial mechanical heart valve requires the patient to take blood thinners and major precautions against injury for their entire lives. Research has also shown that the placement of an artificial heart valve causes the heart to change shape over time, impacting heart function later in life and leading to a shortened life span.
Replacing this valve with a living transplanted valve will give Preston freedom from a lifetime of blood-thinning medication. Research also shows these live tissue implants should grow along with him, greatly decreasing the likelihood of future open-heart surgeries.
“Everyone is ecstatic with his progress so far,” says Lauren Porter, who is the patient’s mother. “We hope having this surgery will give him a lot more freedom to do the things he loves in his life, and we hope that by sharing our story we are helping to make procedures like this more available to kids who need them in the future.”
Children’s National is the first hospital to remove a child’s previously implanted artificial valve and replace it with a live working valve from a donated heart through a relatively new procedure called a partial heart transplant. The Children’s National partial heart transplant replaced the heart’s mitral valve, which is the valve between the left upper chamber (left atrium) and the left lower chamber (left ventricle) of the heart. In general, partial heart transplants are rare. Prior to this surgery, four U.S. hospitals have used partial heart transplants to replace a failing, living heart valve with a valve from a donor heart, but no organization to date has ever replaced a prosthetic valve with a real one.
“Making this procedure an option for certain children who need a heart valve replacement is critical to having patients live their best lives and to providing hope to their family as they grow into adolescence and adulthood,” says Wayne J. Franklin, MD, senior vice president of the Children’s National Heart Center and a congenital cardiology specialist. “I am proud of our team that conducts such important research to innovate better clinical solutions for all of our patients with congenital heart disease.”
Live tissue partial heart transplants also offer an additional benefit. Donated hearts that do not qualify for use in a total heart transplant may have healthy components, like valves, that can be used for patients who don’t require total replacement. Candidates and potential donors are listed in a registry and matched according to biological factors including blood type, similar to the process for determining full heart transplant candidates.
Dr. Franklin’s talk offered his observations of how the administrative backbone behind clinical care supports a thriving center for infants and children with congenital heart disease and their families.
Wayne Franklin, MD, FACC, senior vice president of Children’s National Heart Center, joined a panel discussion at Cardiology 2025: The 28th Annual Update on Pediatric and Congenital Heart Disease. The panel, Healthcare Administration in Pediatric and Congenital Cardiovascular Disease: Sharing Challenges and Creating Solutions, sought to identify the traits that successful U.S. healthcare programs, and especially pediatric cardiovascular programs, have in common.
Dr. Franklin’s talk, “Structuring Administration for Pediatric & Congenital Cardiovascular Care,” offered his observations of how the administrative backbone behind clinical care supports a thriving center for infants and children with congenital heart disease and their families.
The big picture
Dr. Franklin noted that the best programs are finding successful combinations of the right ingredients to make the “secret sauce” — focus on high quality care being delivered in ways that are financially sustainable. More than ever, this is hard to accomplish.
Today’s pediatric programs are often organized in an academic model where clinicians are employed by a university or medical school, typically within a Department of Pediatrics, with pediatric subspecialties all falling together under that department. While the academic model has been successful up to this point, there may be valuable lessons to learn and opportunities for further success by looking at outcomes from other models in the broader adult healthcare sector.
Key takeaways
Dr. Franklin offered several examples of key models for pediatric heart centers to consider. They include:
A multi-disciplinary, “service-line centered” structure: All doctors, nurses, advanced practice providers and support staff aligned together under a “center” or “institute” model, similar to the Cleveland Clinic’s Institutes of Excellence.
A blended, “privademic” structure for clinicians, where they are direct employees of a hospital, but not of a larger university or healthcare system.
Clinician leadership and engagement in business administration structure and function, to make sure that patients remain front and center in business decisions.
Dedicated quality and safety teams that are driven by data and outcomes, foster frequent and early communication and ensure care providers actively engage with these efforts.
A model that supports innovations in care and investments in research to continue advancing best practices for patients and families.
A system for education and training to make sure the next generation can effectively carry on the established culture of excellence.
What matters most
No matter the structure, the most important and common theme among successful health systems, hospitals and even specific heart programs, is steadfast, organization-wide dedication to decision making driven by what is best for patients. This approach should drive a focus on early detection and/or prevention, and lead to positive outcomes, which ultimately brings financial sustainability.
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 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.
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.
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.
Speaker: Does the Nature and Size of the Fontan Pathway Make a Difference?
Speaker: 3rdAnnual 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
Pseudoaneurysm of Mitral-Aortic Intervalvular Fibrosa with Left Ventricular Dilation of Arrhythmias, David Finkelstein, MD
https://innovationdistrict.childrensnational.org/wp-content/uploads/2025/02/CHOP-conference-feature.jpg300400Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2025-02-25 13:01:172025-02-25 13:03:20Heart Center experts contribute to Annual Update on Pediatric and Congenital Cardiovascular Disease
Experts 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.
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
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
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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.
https://innovationdistrict.childrensnational.org/wp-content/uploads/2024/12/Donofrio-feature.jpg300400Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2024-12-16 13:31:362025-01-16 13:13:27Fetal detection, risk stratified care algorithms give infants with CHD their best chance to thrive
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.
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Six 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:
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.
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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.”
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Short-term outcomes data may be one benchmark of the quality and safety found in a pediatric cardiac surgery program, but according to the team at Children’s National Hospital, it shouldn’t be the sole factor in how referring physicians and families make decisions about where to seek care.
Instead, physicians and families need more information about what to expect for a child’s entire lifespan. To meet this need, the Division of Cardiac Surgery at Children’s National has launched the Children’s National Cardiac Outcomes Registry (CNCOR), a first-of-its-kind database that captures outcomes from 15-plus years of congenital heart surgical repairs for specific congenital heart conditions.
What it means
Today, most pediatric heart programs publicly share their outcomes based on benchmarks defined by the Society for Thoracic Surgeons (STS). For cardiac surgery, the data points are focused on the short-term outcomes for various procedures, ranging from 30 days to one year after surgery.
However, as surgical procedures have been refined and multi-disciplinary teams continually improve their knowledge of how to treat children with these congenital heart defects, more children with these conditions are living far beyond those time frames. One metric, operative mortality for “index cases” defined by the STS (excluding VAD and ECMO), measures how many children having heart surgery with the cardiopulmonary bypass die during surgery or within the 30 days after surgery.
Recently at Children’s National, the Cardiac Surgery, Cardiac Intensive Care Unit, Cardiology and Cardiac Anesthesia teams had a remarkable year with zero operative mortality, or no deaths, for the types of cases included in this benchmark. While it’s impossible to expect zero mortality to continue indefinitely when caring for children with the most severe and complex heart conditions — as is the case at Children’s National — the national average operative mortality for these procedures is closer to 3%.
Yves d’Udekem, M.D., Ph.D., chief of Cardiac Surgery at Children’s National, says that this achievement is not one he expected to “ever see in his lifetime” and is a testament to the teams’ dedication to providing the highest quality care every day. However, he also noted, “Achieving such impressive statistics for short-term measures has never been, is not, and will never be my objective. We also need to look beyond it. What happens to this patient 5, 10 or 15 years down the line? That’s what we want to know.”
Children’s National leads the way
The CNCOR collects long-term data from 20 years of cardiac surgical procedures at Children’s National. This data has allowed Children’s National to create a series of charts that show predicted long-term outcomes for specific congenital heart conditions.
The charts are now available in a new Cardiac Surgery Long-Term Outcomes section on the website, organized by specific types of congenital heart disease, including:
Tetralogy of Fallot
Aortic arch coarctation
Atrioventricular septal defects
Transposition of the great arteries
For most conditions, data is available showing long-term mortality as well as re-operation or re-intervention rates for children who underwent these procedures at Children’s National, going as far back as the year 2000. Eventually, the database might expand to include indicators such as exercise capacity and neurological outcomes.
What’s next
The launch of the CNCOR is the start of efforts by the team at Children’s National to provide what Dr. d’Udekem calls “proper” benchmarking based on the whole life of a patient rather than a single event in time.
If more institutions collect and report this data and make it available, patients, families and practitioners who refer to cardiac surgery will have a true lifetime perspective of what a surgical procedure at a specific institution may mean for a child.
https://innovationdistrict.childrensnational.org/wp-content/uploads/2024/08/cardio-surgery-feature.jpg300400Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2024-08-29 14:18:562024-08-29 14:20:49Long-term outcomes are key measure of CHD care quality and safety
Wayne J. Franklin, M.D., F.A.C.C., recently joined Children’s National Hospital as senior vice president of the Children’s National Heart Center. In that role, he oversees the full spectrum of heart care services which includes comprehensive care, as he puts it, from twinkle — when a child is barely more than a twinkle in their mother’s eye — to wrinkles — or throughout the lifespan.
During his first week, Dr. Franklin answered questions about his vision for the Children’s National Heart Center and told the team more about his clinical and research priorities.
Q: Why did you choose Children’s National?
A: Children’s National has such a long history of caring for the children and families in the community — over 150 years. This is a hospital taking fantastic care of patients now, but also planning for the future and the future of healthcare specifically. And I wanted to be part of that team. We know health care is ever changing and I want to be ahead of that, really providing the best care possible for today’s patients and about how to plan the ideal care for tomorrow’s patients.
I’m also excited to work with Children’s National President and CEO Michelle Riley-Brown. When I worked with her previously, I found out she’s a fantastic leader. I know she’s already started to do amazing things for Children’s National and the community.
Q: What is your vision for Children’s National Heart Center?
A: My vision for the heart center is to organize, coordinate and optimize all the different aspects of caring for children with heart problems.
It’s a complicated process. There’s intensive care in the hospital, ambulatory care in the clinic, acute care and emergency care. One of my roles is to coalesce all of those facets to provide total care for people from the prenatal period through birth and beyond into the teenage years, adulthood and even parenthood and grandparenthood.
I think we’re well-equipped to do that here at Children’s National.
As part of our commitment to providing the best care for patients and their families, we also plan to rely on our patient-family advisory council and our family-centered care approach. We take patient and family concerns to heart and want to continue bringing that information together with our world-class clinical care. That’s how we’ll be sure to provide great outcomes now and down the road.
Q: How is research a part of your vision for the Heart Center?
A: Research is critical to cardiac disease in children, especially in Washington, D.C. I think we’re very fortunate because people here at Children’s National are doing groundbreaking research and we work close to truly great scientific organizations like the George Washington University and the National Institutes of Health. Some of our heart center faculty actually work at the NIH too.
The top centers in the country, including Children’s National, are involved with cutting-edge innovation and research alongside clinical care and a big part of my job is to support these efforts to translate this science and help improve health outcomes for our patients.
Q: Why did you choose to work in the field of pediatric cardiology?
A: While children with heart problems can become very sick, our advances in cardiac surgery, catheter interventions, cardiac intensive care and anesthesia allow us to work together to make them better reasonably quickly. To be able to provide them that care is really rewarding. Our team can really impact their health for a lifetime.
Q: What research are you, personally, interested in?
A: The research that I’m particularly interested in involves the full gamut of cardiac disease, from single ventricle physiology to pulmonary hypertension to fetal cardiology to women with heart disease. Fortunately, here at Children’s National there is a strong research infrastructure and some fantastic physician scientists.
Q: How did your interest in pediatric cardiology evolve into a specialty in adult congenital heart disease?
A: When these kids grow up, they become adults with heart disease that is caused by their congenital heart lesions. It’s a different type of heart disease than an age-related heart attack, high cholesterol or stroke. I focused on this area many years ago because there are now more adults with congenital heart disease than children.
Currently, there is a need for more adult congenital heart disease specialists and there will continue to be need for even more in the future. I’m fortunate to join one of the best adult congenital heart programs in the country by coming to Children’s National.
Q:How do you spend your free time when you aren’t here at the hospital?
A: I work a lot but when I get time away from work, I love to spend my it with my family and I’m lucky to have a truly spectacular wife. In December, we’ll celebrate our 20th wedding anniversary and it’s been an extraordinary and exciting ride. We have two wonderful kids, both teenagers. Being a father myself has given me a different perspective about taking care of children throughout their lifetimes.
Q: What’s your favorite Washington, D.C., monument?
A: I always have to go back to the Lincoln Memorial. It was the first monument I saw on an 8th grade trip. I still remember the moment when I first walked up there…you see him. Incredible. He is literally larger than life, it’s just breathtaking. I think I’ll always remember that feeling.
https://innovationdistrict.childrensnational.org/wp-content/uploads/2024/03/Wayne-J.-Franklin-feature.png400300Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2024-07-22 11:38:382024-09-06 14:12:01Optimized congenital heart care ‘from twinkle to wrinkle’: Q&A with Wayne Franklin
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.
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.”
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:
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.”
https://innovationdistrict.childrensnational.org/wp-content/uploads/2024/02/Newborn-baby-CNRI.png385685Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2024-02-29 11:07:062024-12-11 14:28:37Pioneering research center aims to revolutionize prenatal and neonatal health
“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.”
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.
https://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/Yves-dUdekem.png300400Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2023-12-21 16:24:182025-01-28 10:43:00Evidence and expertise drive cardiac surgery innovation at Children’s National Hospital
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.
Although entirely preventable, RHD, a disease of poverty and social disadvantage resulting in high morbidity and mortality, remains an ever-present burden in low- and middle-income countries, as well as rural, remote, marginalized and disenfranchised populations within high-income countries.
A rheumatic heart disease (RHD) work group convened by the National Heart, Lung, and Blood Institute (NHLBI) concludes that any priority intervention strategies to slow or stop late complications of RHD need to consider local contexts and should be integrated into health systems to meet the affected community’s needs in a sustainable way.
The group outlined priorities based on current available evidence to support the development and implementation of accessible, affordable and sustainable interventions in low-resource settings to manage RHD and its related complications.
Craig Sable, M.D., associate chief of Cardiology at Children’s National Hospital, served as a senior author on the recommendations, based on the work group findings.
Why it matters
Although entirely preventable, RHD, a disease of poverty and social disadvantage resulting in high morbidity and mortality, remains an ever-present burden in low- and middle-income countries, as well as rural, remote, marginalized and disenfranchised populations within high-income countries.
The NHLBI workshop sought to support RHD eradication efforts worldwide by:
Analyzing the current state of science
Identifying basic science and clinical research priorities
Each work group was assigned to review existing guidelines and research for different stages of the disease’s progression, which is now being published together as a set of five companion articles to raise the prioritization of RHD research and funding.
Moving the field forward
Due to the high prevalence of RHD in low- and middle-income countries, Dr. Sable’s work group focused on gaining a better understanding of the needs in the field from the five perspectives: people living with RHD, the community, healthcare providers, health systems and policymakers.
They identified several priorities and strategies, and they stressed that any interventional strategy, now or in the future, must be culturally safe and community-driven to ensure the creation of a locally and culturally relevant, sustainable continuum of care for people from historically marginalized populations.
What’s next
The authors emphasize that that over 300,000 deaths per year are the result of inadequate, underfunded and poorly integrated care. “Global vision and leadership to enact and implement available policies are needed to close large research gaps in all aspects at patient, health system and policy levels. Robust research and development are urgently needed to improve comprehensive tertiary care and ensure implementation of evidence-based interventions, while developing new innovations, technologies and interventions.”
You can read all the working group manuscripts, including this one: Tertiary Prevention and Treatment of Rheumatic Heart Disease: A National Heart, Lung, and Blood Institute Working Group Summary, in BMJ Global Health.
Learn more about the challenges of rheumatic heart disease in sub-Saharan Africa and other developing parts of the world through the Rheumatic Heart Disease microdocumentary series:
https://innovationdistrict.childrensnational.org/wp-content/uploads/2023/11/boy-with-RHD-Feature.png300400Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2023-11-02 10:27:452025-02-28 12:30:09Local context, health system integrations key to sustainable interventions after RHD diagnosis
In their study, the team at Children’s National Hospital found that specific brain regions become especially vulnerable to injury around 24 weeks of pregnancy when developing babies begin to have high energy demands and rapid neurovascular changes.
For the first time, researchers have found that babies born with congenital heart disease (CHD) have alterations to the emerging functional connectivity of their brains in utero. The changes are related to the subtype of their CHD and their oxygen status before they have lifesaving surgery to treat their cardiac malformation, according to new findings published in the American Heart Association’s Circulation Research.
In their study, the team at Children’s National Hospital found that specific brain regions become especially vulnerable to injury around 24 weeks of pregnancy when developing babies begin to have high energy demands and rapid neurovascular changes. That leaves certain parts of the brain, including the brainstem, more susceptible to injury from cardiac complications and poor circulation.
“We used a special type of magnetic resonance imaging to safely study the brains of these unborn babies, and we found that they have weakened connectivity in the deep grey structures, which are responsible for sensation, movement, alertness and other core functions,” said Josepheen De Asis-Cruz, M.D., Ph.D., assistant professor at the Developing Brain Institute at Children’s National and an author of the study. “This offers an important clue in utero to the type of care the babies will eventually need when they are born.”
The big picture
In the past decade, the survival rate for fetuses with CHD has greatly improved. About 80% of cases – even some of the most high-risk heart defects – can be successfully treated or palliated with surgery and survive. Yet Dr. Cruz said researchers are finding that the rates of poor neurodevelopmental outcomes are about the same. That’s why she and her colleagues are looking at what precisely may be injuring the brains of these newborns prior to surgery, offering a possible roadmap to interventions.
The fine print
The research team studied 107 healthy, low-risk pregnancies and 75 pregnancies known to be complicated by CHD. They used functional connectivity magnetic resonance imaging (fcMRI) to examine the emerging connections of the brains of unborn babies, given fcMRI’s unique ability to query the brain in a resting state when a patient is unable to respond to tasks. They also studied the oxygen saturation levels of the babies after they were born and then mapped all of this information to the type of CHD that they were diagnosed with.
“Our findings indicate that the compromised connectivity in the brains of CHD patients before delivery is linked to hypoxia after birth,” Cruz said. “There were important differences in the low- and high-risk CHD groups. Babies born with transposition of the great arteries or hypoplastic left heart syndrome – two of the most high-risk diagnoses – have notable changes in their brain function, which could someday be used as biomarkers to guide their care.”
What’s ahead
Researchers at Children’s National are working together, using a variety of modalities, to move toward precision imaging in utero to help predict a child’s neurodevelopmental outcomes. The ultimate goal: better interventions sooner.
“This work is foundational. As we fine-tune more techniques to identify babies at risk, we can understand how environmental, genetic and epigenetic factors impact brain development and guide care decisions,” said Catherine Limperopoulos, Ph.D., director of the Center for Prenatal, Neonatal & Maternal Health Research and a senior author of the paper. “We can imagine a day where we can offer pregnant mothers highly detailed and personalized information about their unborn baby, and individualized interventions that lead to healthier lifetimes.”
https://innovationdistrict.childrensnational.org/wp-content/uploads/2023/10/pregnant-woman-looking-at-sonogram.png300400Innovation Districthttps://innovationdistrict.childrensnational.org/wp-content/uploads/2023/12/innovationdistrict_logo-1-1030x165.pngInnovation District2023-11-01 07:00:492023-10-31 18:01:24Babies with congenital heart disease display disrupted brain function before birth