Urology

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.

colorectal 5 year infographic

Division of Colorectal & Pelvic Reconstruction: 5 year highlights

colorectal 5 year infographic

Dr. Marc Levitt with a young patient

Marc Levitt, M.D., reflects on the Colorectal & Pelvic Reconstruction Program

Dr. Marc Levitt with a young patient

Dr. Levitt shares insights into the program’s journey, key successes and future goals.

This September, the Colorectal and Pelvic Reconstruction Program at Children’s National proudly marks five years of commitment to patient-centered care for children and their families. Under the guidance of Division Chief Marc Levitt, M.D., the program has achieved remarkable advancements in clinical care, improving patient outcomes and enhancing family experiences.

Dr. Levitt shares insights into the program’s journey, key successes and future goals, highlighting the importance of collaboration among specialists and the continuous pursuit of innovative treatments.

Q: What was your vision for the program when it first launched? Has the vision changed?

A: When the Colorectal Program first launched, we aimed to establish a comprehensive program for colorectal patient care. This included integrating specialists across multiple disciplines, such as pediatric general surgery, urology, gynecology, gastroenterology, nursing, neurosurgery, orthopedics, pathology, radiology, anesthesia, psychology and pelvic floor therapy. Our efforts have exceeded expectations; the team has developed a cohesive and collaborative dynamic where each specialist contributes effectively to patient care. This integrated approach enhances outcomes, as patients and their families are at the center of our model, surrounded by a network of dedicated caregivers and coordinators, all focused on improving the patients’ quality of life.

Q: Can you highlight some key successes or achievements of the program?

A: The creation of our integrated colorectal care program at Children’s National has been a significant success, bolstered by strong institutional support. While this model requires considerable effort, it ultimately attracts patients and leads to outstanding outcomes. We’ve received patient inquiries from 48 states (AK,AL, AR, AZ, CA, CO, CT, D.C., DE, FL, GA, HI, IA, ID, IL, IN, KS, KY, LA, MA, MD, MI, MN, MO, MS, MT, NC, ND, NE, NH, NJ, NM, NV, NY, OH, OK, OR, PA, RI, SC, TN, TX, UT, VA, VT, WA, WI, WV) and 68 countries (Australia, Bahamas, Bangladesh, Bulgaria, Canada, Chile, Croatia, Cyprus, Dominican Republic, Ecuador, Egypt, England, Ethiopia, France, Germany, Greece, Guatemala, Haiti, Hong Kong, India, Ireland, Israel, Jamaica, Jordan, Kazakhstan, Kenya, Kuwait, Lithuania, Maldives, Mauritania, Mexico, Monaco, Morocco, Myanmar, The Netherlands, New Zealand, Nepal, Nigeria, Northern Ireland, Norway, Oman, Palestine, Pakistan, Paraguay, Papua New Guinea, Peru, Philippines, Portugal, Romania, Russia, Saint Lucia, Saudi Arabia, Scotland, Serbia, Singapore, Slovakia, Slovenia, Spain, Sri Lanka, South Korea, St. Kitts & Nevis, Sudan, Sweden, Ukraine, Uzbekistan, United Arab Emirates, Venezuela, Wales).

Some key successes include the development of innovative surgical procedures for conditions such as imperforate anus and anorectal malformations, advanced repair techniques for cloacal malformations, integrated care strategies for colonic dysmotility, and novel approaches for the newborn care of patients with cloacal exstrophy. All these new approaches were developed at Children’s National over the past five years.

In addition to clinical innovations, we have significantly enhanced our academic environment. Over the last five years, our team has authored more than one hundred articles and three well-regarded books, helping health care professionals around the world improve the care they provide to their patients. We have also trained surgical fellows and nurses in colorectal care and welcomed clinicians from over 30 countries for specialized training. This outreach is especially fulfilling, as it enables us to influence the care of children around the globe whom we may never meet, by sharing valuable skills and knowledge with these practitioners. 

Q: Can you share examples of particularly challenging cases or high-profile cases that have influenced the program’s clinical approach?

A: The way we care for a patient with a cloaca is unique – the entire team joins together in the operating room to assess the anatomy, and every member then gives their thoughts on how to approach the reconstruction. The very next day we perform that surgery, with the understanding of the anatomy in mind, and what plays out in that operating room is quite magical. This collaborative approach frequently leads to exceptional outcomes, as our diverse ideas come together to form a cohesive plan. Through this teamwork, we have developed creative ways to solve complex anatomical problems that no one individual surgeon would have thought of on their own.

Q: How have patient outcomes improved over time?

A: We have optimized the collaborative experience so that patients only need a single visit to see all the specialists they require. Our outcomes for complex colorectal surgeries have significantly improved, particularly for conditions like cloaca, Hirschsprung disease and anorectal malformations. Advances in surgical techniques and enhancements in nursing care have led to dramatically better results. We have reduced, and in some cases eliminated, complications from these surgeries, while also seeing improvements in bowel continence and kidney health. Our nursing teams — outpatient, operating room and inpatient — play a crucial role, offering unique insights into pre- and post-operative care that are vital for achieving successful outcomes.

Q: What have been the biggest challenges or barriers faced by the program and how have you addressed these challenges?

A: One of the biggest challenges we face is ensuring that patients can get to us. Many patients encounter obstacles with insurance companies that restrict travel outside their network, or they deal with the difficulties of traveling from far away for their surgery. We have worked diligently to address these issues by improving our insurance approval process and making families comfortable during their stay in Washington, D.C., including assistance with accommodations, necessary medical supplies, etc. If we can remove these barriers, we can care for more patients and make the experience easier for them and their families.

Q: How does the colorectal program collaborate with other departments or services? How has the program integrated from various specialties (e.g., urology, gynecology, GI) to enhance patient care?

A: We have specialists who are fully integrated in their roles on the colorectal and pelvic reconstruction team. General pediatric surgeons, urologists, gynecologists and gastroenterologists work both in the colorectal program and in their home program in a uniquely integrated fashion. For example, our urologists each spend half of their time in general urology and the other half in colorectal, handling the urologic aspects of colorectal patients’ care. In this way collaboration is enhanced and encouraged.

Q: What are the future goals or plans for the colorectal program?

A: Our future goals for the colorectal program are focused on expanding our impact and enhancing patient care. First and foremost, we aim to help as many patients as possible. We plan to collaborate with other colorectal centers worldwide to share knowledge and best practices. Training surgeons and nurses remains a priority, as we want to equip as many healthcare professionals as possible with the skills needed in this field. Additionally, we are committed to traveling to the developing world to provide care for children who cannot access services at Children’s National. Finally, we intend to enhance our research efforts, leveraging basic science to investigate and address conditions related to the colon, ultimately seeking to reduce or eliminate associated illnesses.

AAP 2024 Conference logo

Children’s National Hospital the 2024 American Academy of Pediatrics meeting

Children’s National Hospital-affiliated participants will attend this year’s American Academy of Pediatrics National Conference and Exhibition. The meeting will take place in Orlando, Florida from September 27 to October 1. You will find a mini schedule of sessions below.

Date Time Presenter Title
9/27/2024 8:00:00 AM Briony Varda, M.D. H1016: Section on Surgery Program: Day 1
9/27/2024 8:00:00 AM Briony Varda, M.D. H1017: Section on Urology Program: Day 1
9/27/2024 8:00:00 AM Lowell Frank, M.D., FAAP H1014: Section on Cardiology and Cardiac Surgery Program: Day 1
Through the Looking Glass: Using Past Decisions to Inform Current and Future Clinical and Professional Practice
9/27/2024 2:30:00 PM Brian K. Reilly, M.D., FAAP S1208: Sounding the Alarm on Noise: Prevention Is Key
9/27/2024 4:00:00 PM Brandon Kappy, M.D., MPP S1312: Using Lessons From the East Palestine Train Derailment to Prepare for Environmental Disasters
9/28/2024 8:00:00 AM Alicia M. Tucker, M.D. H2013: Section on Obesity Program
9/28/2024 8:00:00 AM Annie L. Andrews, M.D., MSCR H2011: Section on Emergency Medicine Program: Day 2
EmergiQuiz, State of the Section & SOEM Awards Presentations and 2024 PEMPix & Hot Topics in Pediatric Emergency Medicine
9/28/2024 12:00:00 PM Monika Goyal, M.D., M.S.C.E.
 Prevalence of Period Poverty in a Pediatric Emergency Department
9/28/2024 3:30:00 PM Allison Markowsky, M.D., MSHS, FAAP S2412: What’s Trending in the Newborn Nursery: Controversies and Evidence
9/28/2024 5:00:00 PM Bernhard L. “Bud” Wiedermann, M.D., M.A., FAAP S2507: Should I Change My Clinical Practice Based on a Hot New Article? Reading Journals With a Critical Eye
9/29/2024 8:30:00 AM Dennis Ren, M.D. H3022: Section on Emergency Medicine Program: Day 3
Inaugural “Babble Royale” Competition & More Hot Topics in PEM; PediSonoFest
9/29/2024 9:00:00 AM Natasha Shur, M.D. S3208: Genetic Testing Boot Camp
9/29/2024 1:00:00 PM Lamia Soghier, M.D., M.Ed., M.B.A., FAAP H3037: Section on International Medical Graduates Program
Opportunities and Paths for Career Development in Academic Pediatrics
9/29/2024 4:00:00 PM Margaret Rush, M.D., MSHS I3304: Emergencies in the Technology-Dependent Medically Complex Children: What Every Pediatrician Should Know
9/29/2024 5:00:00 PM Anjna Melwani, M.D. S3501: Emergencies in the Technology-Dependent Medically Complex Children: What Every Pediatrician Should Know
9/30/2024 2:00:00 PM Rana F. Hamdy, M.D., M.P.H., MSCE S4302: Diagnosis and Treatment of Community-Acquired Pneumonia
10/1/2024 9:00:00 AM Nathaniel S. Beers, M.D., M.P.A., FAAP S5207: Eliminating Suspension, Expulsion, and Other Harsh Discipline Practices in Schools and Early Education

 

Spina Bifida Association

Celebrating excellence: Children’s National Spina Bifida Program earns SBA accreditation

Spina Bifida Association

We are thrilled to announce that the Children’s National Spina Bifida Program has received official accreditation from the Spina Bifida Association (SBA).

We are thrilled to announce that the Children’s National Spina Bifida Program has received official accreditation from the Spina Bifida Association (SBA). This is a significant milestone that underscores our commitment to delivering the highest standards of clinical care and reflects the dedication of our entire team.

To gain a deeper understanding of what this accreditation means, we spoke with Christina Ho, M.D., Co-Director of the Children’s National Spina Bifida Program. Dr. Ho provided valuable insights into the significance of this achievement and its impact on the team and Spina Bifida Program.

Q: What does this accreditation mean to you and our program? 

A: Achieving accreditation from the SBA signifies that our program is aligned with the best clinical practices and standards for spina bifida care. Over the past few years, we have made substantial strides, particularly in enhancing our adolescent transition program, implementing quality improvement projects and expanding community outreach.

This accreditation is a testament to the relentless efforts of our multidisciplinary team, each member of whom is committed to providing exceptional patient care. It acknowledges the hard work and dedication we invest daily to ensure the highest quality outcomes for our patients.

Q: How will this affect patient care?

A: As an accredited clinical care partner, we will have increased opportunities to collaborate on research projects with the SBA and other clinical care sites. This partnership will enable us to continue pushing the envelope on research-focused practices and cutting-edge care for all our patients. Our passion for excellence in patient care remains unwavering, and this accreditation will help us expand the breadth and quality of services and support we provide.

Q: What does this mean for patient families?

A: For families seeking comprehensive spina bifida care, this accreditation is a mark of assurance. By visiting the SBA website, families can now see that Children’s National Hospital is a recognized clinical care partner. This means they can access specialized, state-of-the-art spina bifida care right here in the Washington DC, Maryland and Virginia area. We are excited about the prospect of reaching more families in our region and welcoming those who seek the very best in spina bifida care.

A note on our team

Our program’s success is a direct result of the passion and dedication of our team members. Each individual brings an unwavering commitment to improving the lives of families living with spina bifida. It is this collective enthusiasm and expertise that truly distinguishes our program.

We look forward to continuing our mission of providing exceptional care and making a positive impact on the lives of those we serve. Thank you for your ongoing support and dedication.

Learn more about Children’s National Spina Bifida program.

pediatric colorectal surgeons at Children’s National Hospital

Multi-disciplinary collaboration key in any approach to refractory functional constipation

pediatric colorectal surgeons at Children’s National HospitalFor the last several years, the physicians, advance practice providers, and nurses within the Division of Colorectal and Pelvic Reconstruction at Children’s National Hospital have sought to establish standardized protocols for diagnosing and treating children with severe constipation unresponsive to medical management. Their work seeks to create a collaborative approach that brings gastroenterologists with motility expertise and colorectal surgeons together from the start to streamline testing, analysis, and to avoid unnecessary surgical procedures.

To that end, the team has published several studies that make the case for such a protocol based on their experiences managing this unique population.

What it means

In a 2022 study, the team conducted a retrospective review of children referred for retractable functional constipation to the Division of Colorectal and Pelvic Reconstruction at Children’s National. A unique algorithm for assessment and treatment was created based on the data analysis.

The resulting proposed protocol for medically refractory constipation provided a collaborative framework to standardize the work-up and treatment. This protocol led to the use of antegrade flushes via appendicostomy to empty the colon and was able to in most cases avoid a colonic resection, something done much more commonly in the past

A 2023 study further reiterated the importance of these collaborative approaches, stating, “It is vitally important to recognize that constipation exists on a spectrum of severity with multiple potential etiologic factors and therefore treatment must be customized based on the individual’s symptom, anatomic and manometric findings.”

The 2023 study also introduced an enhanced standardized algorithm to evaluate and treat refractory constipation, with the central idea being a consolidation of evaluation and initiation of treatment into a single combined procedure. This means collaboration between gastroenterology and colorectal surgery in the operating room by including anorectal manometry at the start to rule out anatomic anomalies as the cause of the constipation and to test motility.

Why it matters

In the 2023 study, the authors wrote, “While algorithms for initial evaluation and treatment of functional constipation in children have been described, most articles in the pediatric literature lack details about the work-up and management of those refractory symptoms and the approaches described for such patients vary widely among clinicians.”

That means that children with functional constipation for whom medical treatment has failed face a drastically lower quality of life. Functional constipation and encopresis, or stool soiling, correlates with a higher prevalence of low self-esteem, social withdrawal, and depression. It is critical to correctly diagnose and efficiently treat these conditions and work together to do it quickly.

Children’s National leads the way

As one of the nation’s leaders in pediatric colorectal and pelvic reconstructive surgery, Children’s National, led by Division Chief Marc Levitt, M.D., receives more referrals asking for a surgical solution for severe pediatric constipation than any other center in the world.

Caring for such a large population positions the team to analyze evidence and establish protocols based on statistically relevant numbers of patients. The studies outlined above are the result of the innovative design of the Division of Colorectal and Pelvic Reconstruction, in which multiple divisions involved in the care of these patients, from Gastroenterology to Urology and beyond, experience an unprecedented ability to work together, including in the operating room. It is a fully integrated program with experts in colorectal surgery, GI motility, and colorectal nursing embedded into the same team.

While most children with functional constipation will respond to medical treatment, for those who need further help that includes surgical assessments, the evidence-based algorithms developed in these studies can truly be life-changing for these children and their families.

Read the studies in the Journal of Pediatric Surgery:

Marc Levitt, M.D., in the operating room.

Better standardized care for total colonic Hirschsprung disease

Marc Levitt, M.D., in the operating room.

Clinicians can better manage care for children with total colonic Hirschsprung disease by drawing on the collective expertise from the people who have seen and treated patients with this condition, says Marc Levitt, M.D.

Clinicians can better manage care for children with total colonic Hirschsprung disease, a rare form of the condition, by drawing on the collective expertise from the people who have seen and treated patients with this condition, says Marc Levitt, M.D., chief of Colorectal and Pelvic Reconstruction at Children’s National Hospital.

What is it?

Dr. Levitt and fellow experts within the APSA Hirschsprung Disease Interest group are working together to develop recommendations based on their collective experiences managing the condition. Their recommendations will include specifics for the diagnosis and management of total colonic Hirschsprung disease (a rare type of Hirschsprung disease that involves the entire colon) before and after reconstruction, such as diagnostic criteria, surgical approaches, bowel management, diet, antibiotic prophylaxis, colonic irrigations and post-surgical considerations.

Specifically, the group’s consensus findings and recommendations include:

  • Specific information about using a contrast enema for this diagnosis — namely that there is no obvious transition zone identified.
  • The importance of a surgical approach of colonic mapping to obtain definitive pathology and ileostomy at the time of diagnosis, which is key to getting a child with this condition feeding and growing.
  • Monitoring that growth with nutritional assessment and oral sodium supplementation are vital to their care.
  • High output stomas and loose stool after pull-through can be more readily treated now with anti-motility agents, and better care of the parastomal and perineal skin.

Why does it matter?

Children with total colonic Hirschsprung disease are unique among children with Hirschsprung disease. They present specific pre- and post-operative management challenges. Creating and sharing consensus guidelines will create a rational, expert-based approach to diagnosing and managing the condition based on direct clinical experience, that others can draw from. Because the condition is relatively rare, care decisions historically have been made based mainly on literature about it. However, that literature often shows a lack of clear consensus on how to approach the condition.

Children’s National leads the way

Dr. Levitt and his colleagues collectively have seen more cases of total colonic Hirschsprung disease than any other clinicians in the world and have helped to author better guidelines specifically to try to standardize the pre- and post-operative management of this patient group. The goal is to improve the likelihood of a better outcome for the child no matter where a family goes for care.

Cloacal Malformations: Case Studies cover

First textbook for cloacal malformations offers deep dive into care and treatment

Cloacal Malformations: Case Studies cover“Within the field of pediatric colorectal and pelvic reconstruction, the most complex anatomic problem a pediatric surgeon can face is that of a cloacal malformation,” writes Marc A. Levitt, M.D., chief of Colorectal and Pelvic Reconstruction at Children’s National Hospital. A new, first-of-its kind textbook, Cloacal Malformations: Case Studies, seeks to shed light on the multi-disciplinary care required to care for people with this rare condition — when the urinary, gynecologic and colorectal system all exit the body via a common channel which requires reconstruction. The book will be available for pre-order on April 9, 2024.

What is it

Dr. Levitt’s fifth textbook, Cloacal Malformations: Case Studies, is the first comprehensive account of all the care elements needed to successfully treat and manage care for someone with a cloacal malformation. It includes preoperative evaluation and surgical planning, the anorectal malformation (ARM) index, surgical reconstruction, urological evaluation and long-term care. Also covered are the gynecologic evaluation and needed interventions, neurological implications, bowel management and the long-term management of patients with cloacal malformations.

The book’s associate editors hail from some of the subspecialties that are critical to caring for these conditions, including:

  • Tamador Al-Shamaileh, M.D., pediatric colorectal and general
  • Andrea T. Badillo, M.D., pediatric colorectal and pelvic reconstruction
  • Allison C Mayhew, M.D., pediatric gynecology
  • Teresa L. Russell, MS, colorectal and pelvic reconstruction research
  • Briony K Varda, M.D., pediatric urology
  • Richard J Wood, M.D., pediatric colorectal and pelvic reconstruction

Why it matters

This textbook is a compelling resource for all clinicians caring for patients with cloacal malformations. It includes case studies that provide insights into a variety of different clinical scenarios, the first publication to categorize the different types of cloaca, as well as full brand new colored illustrations to enable the reader to understand and gain experience from detailed descriptions.

It is the first of its kind to address the full spectrum needs of someone with a cloacal malformation and will help improve and standardize care for this complex patient population no matter where that patient lives in the world.

Children’s National leads the way

Dr. Levitt is the most experienced pediatric colorectal surgeon in the world. Having performed more than 15,000 procedures during his career, he has cared for more children with cloacal malformations (1,000 cases) and other complex congenital colorectal conditions than anyone else. The information he shares in this textbook, and his previous books, is intended to enhance the care of all children with colorectal and pelvic reconstructive needs, “whether they come into our clinic or are seen by a colleague anywhere in the world,” he notes.

The range of expertise involved in the creation of this textbook reflects Dr. Levitt’s unique approach to pediatric colorectal and pelvic reconstruction, which includes a strongly integrated team of pediatric colorectal surgeons, urologists, gynecologists, gastroenterologists and nurses.

Pre-order a copy of the textbook.

Katie Scarpaci talks with a provider and patient

The division of urology creates tailored orientation program

The Division of Urology at Children’s National has developed a first-of-its-kind orientation program for pediatric urology advanced practice providers (APPs). This program was created based on real feedback from pediatric urology APPs in the United States and Canada.

The primary purpose of the orientation program is to increase the knowledge and confidence of pediatric APP’s in transition to independent practice.  The program prepares the next group of advanced practice providers in the Division of Urology to achieve the same high quality of care that the current group provides to our patients.

“I think what makes our orientation program unique is how involved leadership is in training the orientee. We are with our orientee every step of the way every week. We are there making sure that they are attaining their skills and their knowledge. We’re checking in on them very regularly, and we also are trying to make it very individualized to that person.” said Katie Scarpaci, nurse practitioner and creator of the APP orientation program.

collage of news outlet logos

Children’s National in the News: 2023

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

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

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

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

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

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

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

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

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

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

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

6. Formerly conjoined twins reunite with doctors who separated them

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

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

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

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

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

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

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

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

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

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

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

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

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

MRI scan of human lumbar spine

Improving outcomes of infant spinal anesthesia through new intervention program

MRI scan of human lumbar spine

New intervention program could help improve outcomes of infant spinal anesthesia.

Spinal anesthesia has a long history as an effective and safe technique to avoid general anesthesia (GA) in infants undergoing surgery. However, adverse effects of GA on infants — children younger than 1 year of age — include respiratory complications, delayed postanesthesia care unit (PACU) discharge and unplanned hospital admissions. In addition, while some reassuring studies have demonstrated the safety of anesthetic agents on the developing brain, the data are still inconclusive, particularly for patients with longer, more frequent anesthetic exposures.

The big picture

In a recent study published in the journal of Pediatric Quality and Safety, Sophie Rose Pestieau, M.D., anesthesiologist at Children’s National Hospital and senior author of the study, and other experts, created a healthcare improvement program aimed to increase the percentage of successful spinal placements as the primary anesthetic in infants undergoing circumcision, open orchidopexy or hernia repair from 11% to 50% by the end of 2019 and sustain that rate for 6 months.

What it means

The interdisciplinary team created a key driver diagram and implemented the following interventions: education of nurses, surgeons and patient families; focused anesthesiologist training on the infant spinal procedure; premedication; availability of supplies; and surgical schedule optimization.

The team collected data retrospectively by reviewing electronic medical records. The primary outcome was the percentage of infants undergoing circumcision, open orchidopexy or hernia repair who received a successful spinal as the primary anesthetic. The team tracked this measure and evaluated using a statistical process control chart.

“We were able to move the needle and successfully offer this technique to many more infants as we educated families on the benefits of spinal anesthesia, as well as other surgical colleagues and the perioperative nursing staff,” Dr. Pestieau said.

Why it matters

Before this quality improvement project, 11% of the circumcisions, open orchidopexies and inguinal hernia repairs were performed in infants using spinal anesthesia as the primary anesthetic. Between August 1, 2018, and February 29, 2020, 470 infants underwent circumcision, open orchidopexy or inguinal hernia repair (235 preintervention and 235 postintervention). Of these infants, 132 underwent a successful spinal anesthetic (26 preintervention and 106 postintervention). Following the interventions, spinal placements increased from 11% to 45%, and the success rate of infant spinal anesthesia increased from 73% to 89%.

This quality improvement project successfully increased the percentage of patients receiving spinal anesthesia for specific surgical procedures by increasing the number of patients who underwent successful spinal anesthesia placement.

“We continue to grow the program by expanding the use of spinal anesthesia to other surgical procedures,” Dr. Pestieau concluded.

The project aimed to increase the number of urological procedures successfully performed under spinal anesthesia in children less than 1 year of age. The interventions increased the number of patients who underwent spinal anesthesia placement. They also increased the success rate of spinal anesthesia placements. Further quality improvement efforts may increase the number of infants considered for infant spinal anesthesia as primary anesthesia for their procedure, beyond circumcision, open orchidopexy and inguinal hernia repair.

2023 with a lightbulb

The best of 2023 from Innovation District

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

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

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

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

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

3. New model to treat Becker Muscular Dystrophy

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

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

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

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

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

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

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

7. Why a colorectal transition program matters

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

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

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

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

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

10. Innovation in clubfoot management using 3D anatomical mapping

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

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

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

12. Cardiovascular and bone diseases in chronic kidney disease

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

Patient and doctor demoing Rare-CAP technology

M.D. in your pocket: New platform allows rare disease patients to carry medical advice everywhere

When someone has a rare disease, a trip to the emergency room can be a daunting experience: Patients and their caregivers must share the particulars of their illness or injury, with the added burden of downloading a non-specialist on the details of a rare diagnosis that may change treatment decisions.

Innovators at Children’s National Hospital and Vanderbilt University Medical Center, supported by Takeda, are trying to simplify that experience using a new web-based platform called the Rare Disease Clinical Activity Protocols, or Rare-CAP. This revolutionary collection of medical information allows patients to carry the latest research-based guidance about their rare disorders in their phones, providing a simple QR code that can open a trove of considerations for any medical provider to evaluate as they work through treatment options for someone with an underlying rare disease.

“No one should worry about what happens when they need medical help, especially patients with rare diseases,” said Debra Regier, M.D., division chief of Genetics and Metabolism at Children’s National and Rare-CAP’s lead medical advisor. “We built this new tool because I have watched as my patient-families have wound up in an emergency room — after all, kids get sprains or fractures — but they don’t have the expertise of a rare disease specialist with them. My hope is that they’re going to pull out their phones and access Rare-CAP, which will explain their rare disease to a new provider who can provide more thoughtful and meaningful care.”

The big picture

A rare disease is defined as any disorder that affects less than 200,000 people in the United States. Some 30 million Americans are believed to be living with one of the 7,000 known rare disorders tracked by the National Organization of Rare Diseases (NORD). Led by Dr. Regier, the Rare Disease Institute at Children’s National is one of 40 NORD centers for excellence in the country that provide care, guidance and leadership for the wide array of disorders that make up the rare disease community.

While a key goal of Rare-CAP is to bolster patient self-advocacy, the platform will also allow medical providers to proactively search for protocols on rare diseases when they know they need specialized advice from experts at Children’s National, a network of tertiary care centers and patient organizations.

As a leading values-based, R&D-driven biopharmaceutical company, Takeda has committed $3.85 million to the project to help activate meaningful change and empower a brighter future for rare disease communities, providing a unique understanding of the struggle that patients and caregivers face when they need care.

“Our team, alongside the medical and rare disease community, saw the need for a single portal to collect standardized care protocols, and we are thrilled to see this innovative tool come to life,” said Tom Koutsavlis, M.D., head of U.S. Medical Affairs at Takeda. “People with rare diseases and their caregivers need faster access to authoritative medical information that providers anywhere can act on, this will lead to improving the standard of care, accelerating time to diagnosis and breaking down barriers to increase equitable access.”

The patient benefit

The creators of Rare-CAP imagined its use in a wide range of settings, including emergency rooms, surgical suites, dental offices, urgent care offices and school clinics. The platform will eventually profile thousands of rare diseases and lay out the implications for care, while also creating a dynamic conversation among users who can offer updates based on real-world experience and changes in medical guidance.

“Our patients are unique, and so is this tool,” Dr. Regier said. “As we roll out Rare-CAP, we believe it is just the beginning of the conversation to expand the platform and see its power for the patient and provider grow, with each entry and each new rare disease that’s added to the conversation.”

U.S. News Badges

Children’s National Hospital ranked #5 in the nation on U.S. News & World Report’s Best Children’s Hospitals Honor Roll

U.S. News BadgesChildren’s National Hospital in Washington, D.C., was ranked #5 in the nation on the U.S. News & World Report 2023-24 Best Children’s Hospitals annual rankings. This marks the seventh 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.

For the thirteenth straight year, Children’s National also ranked in all 10 specialty services, with eight specialties ranked in the top 10 nationally. In addition, the hospital was ranked best in the Mid-Atlantic for neonatology, cancer, neurology and neurosurgery.

“Even from a team that is now a fixture on the list of the very best children’s hospitals in the nation, these results are phenomenal,” said Kurt Newman, M.D., president and chief executive officer of Children’s National. “It takes a ton of dedication and sacrifice to provide the best care anywhere and I could not be prouder of the team. Their commitment to excellence is in their DNA and will continue long after I retire as CEO later this month.”

“Congratulations to the entire Children’s National team on these truly incredible results. They leave me further humbled by the opportunity to lead this exceptional organization and contribute to its continued success,” said Michelle Riley-Brown, MHA, FACHE, who becomes the new president and CEO of Children’s National on July 1. “I am deeply committed to fostering a culture of collaboration, empowering our talented teams and charting a bold path forward to provide best in class pediatric care. Our focus will always remain on the kids.”

“I am incredibly proud of Kurt and the entire team. These rankings help families know that when they come to Children’s National, they’re receiving the best care available in the country,” said Horacio Rozanski, chair of the board of directors of Children’s National. “I’m confident that the organization’s next leader, Michelle Riley-Brown, will continue to ensure Children’s National is always a destination for excellent care.”

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 17 years, U.S. News has provided information to help parents of sick children and their doctors find the best children’s hospital to treat their illness or condition,” said Ben Harder, chief of health analysis and managing editor at U.S. News. “Children’s hospitals that are on the Honor Roll transcend in providing exceptional 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 eight Children’s National specialty services that U.S. News ranked in the top 10 nationally are:

The other two specialties ranked among the top 50 were cardiology and heart surgery, and urology.

Erin Teeple

Why a colorectal transition program matters

Erin Teeple

Erin Teeple, M.D.

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

What is the Colorectal Transition Program?

The Colorectal Transition Program helps young adults with congenital or acquired colorectal conditions transition their care from pediatric care providers to adult care providers. It is critical that they receive guided transitional care because they often have complex medical and surgical histories from the time they are born affecting more than one organ system. A transitional care team which knows the patient on the pediatric side and can help deliver them to the right doctors and care providers in an adult setting will smooth the transition. Collaborative care across specialties including colorectal surgery, gynecology, urology and gastroenterology helps ensure continued care of all organ systems affected. Similar transition programs already exist for other conditions such as congenital heart disease and cystic fibrosis.

What’s new about this program?

I am both a pediatric surgeon and an adult colorectal surgeon, which means I can care for these children even prenatally and continue that care throughout adulthood. There is no other program in the United States led by a practicing pediatric surgeon who is also board-certified in adult colorectal surgery.

In addition, the collaboration between Children’s National Hospital and Medstar means we can bring unprecedented partnerships with urology, gynecology and gastroenterology on the adult side to offer collaborative care akin to the kind of care we offer our pediatric patients in the Division of Colorectal and Pelvic Reconstruction.

Who will benefit from this program?

Teenagers and adults with congenital and acquired colorectal disease, such as cloaca and other anorectal malformations, Hirschsprung disease, inflammatory bowel disease (IBD), pelvic floor dysfunction, familial adenomatous polyposis (FAP), those who have cecostomy or have had in their past a complex reconstruction will benefit the most from this program.

We have started to transition our existing young adults into this program. We also have seen many adults who have struggled to find care since leaving a pediatric care setting decades ago. These people have come from the local area as well as nationally and internationally to find experienced and collaborative care they have desperately sought.

How is Children’s National Hospital leading the way?

By recruiting the only U.S. surgeon boarded in both pediatric surgery and colorectal surgery, Children’s National will offer unique expertise to both initial surgical reconstruction and care and add a wealth of experience to the care of these children as they age into adulthood.

Having a devoted clinician with a foot in both the pediatric and adult worlds will foster long term relationships and build the depth of the team providing clinical care to all our patients and their families.

Why do you think it is so important to involve a surgeon with your training in the care of these kids?

A pediatric colorectal surgeon is critical to the initial care of an infant with congenital colorectal disease. My knowledge as an adult colorectal surgeon adds a different perspective to the treatment plan for our young patients but also will bring key insight to the process of transitioning that care to providers who specialize in adults later down the road. I also bring the knowledge and experience of a pediatric surgeon to the adult side, which gives me the ability to know the complex congenital anatomy that needed to be reconstructed when the patient was a child and to bring together a team optimized for the care of often complex conditions. Adults with these conditions also have unique needs that are different from the typical adult colorectal patient, and my specific expertise gives me the right skills to help them.

Abstract Happy 2022 New Year greeting card with light bulb

The best of 2022 from Innovation District

Abstract Happy 2022 New Year greeting card with light bulbA clinical trial testing a new drug to increase growth in children with short stature. The first ever high-intensity focused ultrasound procedure on a pediatric patient with neurofibromatosis. A low dose gene therapy vector that restores the ability of injured muscle fibers to repair. These were among the most popular articles we published on Innovation District in 2022. Read on for our full top 10 list.

1. Vosoritide shows promise for children with certain genetic growth disorders

Preliminary results from a phase II clinical trial at Children’s National Hospital showed that a new drug, vosoritide, can increase growth in children with certain growth disorders. This was the first clinical trial in the world testing vosoritide in children with certain genetic causes of short stature.
(2 min. read)

2. Children’s National uses HIFU to perform first ever non-invasive brain tumor procedure

Children’s National Hospital successfully performed the first ever high-intensity focused ultrasound (HIFU) non-invasive procedure on a pediatric patient with neurofibromatosis. This was the youngest patient to undergo HIFU treatment in the world.
(3 min. read)

3. Gene therapy offers potential long-term treatment for limb-girdle muscular dystrophy 2B

Using a single injection of a low dose gene therapy vector, researchers at Children’s National restored the ability of injured muscle fibers to repair in a way that reduced muscle degeneration and enhanced the functioning of the diseased muscle.
(3 min. read)

4. Catherine Bollard, M.D., M.B.Ch.B., selected to lead global Cancer Grand Challenges team

A world-class team of researchers co-led by Catherine Bollard, M.D., M.B.Ch.B., director of the Center for Cancer and Immunology Research at Children’s National, was selected to receive a $25m Cancer Grand Challenges award to tackle solid tumors in children.
(4 min. read)

5. New telehealth command center redefines hospital care

Children’s National opened a new telehealth command center that uses cutting-edge technology to keep continuous watch over children with critical heart disease. The center offers improved collaborative communication to better help predict and prevent major events, like cardiac arrest.
(2 min. read)

6. Monika Goyal, M.D., recognized as the first endowed chair of Women in Science and Health

Children’s National named Monika Goyal, M.D., M.S.C.E., associate chief of Emergency Medicine, as the first endowed chair of Women in Science and Health (WISH) for her outstanding contributions in biomedical research.
(2 min. read)

7. Brain tumor team performs first ever LIFU procedure on pediatric DIPG patient

A team at Children’s National performed the first treatment with sonodynamic therapy utilizing low intensity focused ultrasound (LIFU) and 5-aminolevulinic acid (5-ALA) medication on a pediatric patient. The treatment was done noninvasively through an intact skull.
(3 min. read)

8. COVID-19’s impact on pregnant women and their babies

In an editorial, Roberta L. DeBiasi, M.D., M.S., provided a comprehensive review of what is known about the harmful effects of SARS-CoV-2 infection in pregnant women themselves, the effects on their newborns, the negative impact on the placenta and what still is unknown amid the rapidly evolving field.
(2 min. read)

9. Staged surgical hybrid strategy changes outcome for baby born with HLHS

Doctors at Children’s National used a staged, hybrid cardiac surgical strategy to care for a patient who was born with hypoplastic left heart syndrome (HLHS) at 28-weeks-old. Hybrid heart procedures blend traditional surgery and a minimally invasive interventional, or catheter-based, procedure.
(4 min. read)

10. 2022: Pediatric colorectal and pelvic reconstructive surgery today

In a review article in Seminars in Pediatric Surgery, Marc Levitt, M.D., chief of the Division of Colorectal and Pelvic Reconstruction at Children’s National, discussed the history of pediatric colorectal and pelvic reconstructive surgery and described the key advances that have improved patients’ lives.
(11 min. read)

Societies for Pediatric Urology logo

Children’s National at the Societies for Pediatric Urology Fall Congress

Providers from the Department of Urology at Children’s National Hospital attended the Societies for Pediatric Urology Fall Congress in October 2022 and shared a series of abstracts.

The abstracts look at unplanned healthcare use and missed visits among children with spina bifida, as well as factors associated with these outcomes. The team collected data from chart review and patient interviews to complete these projects. They considered clinical information, as well as demographic information and the childhood opportunity index, which is a composite measure that proxies social determinants of health, while accounting for how far a family lives from the emergency department.

Clinically, patients with more complex spina bifida (e.g., ventricular shunt or wheelchair use) were more likely to use the emergency department. Genitourinary and gastrointestinal problems were the most common reasons for emergency department use. Within the Spina Bifida Program at Children’s National, our providers are aggressively trying to reduce gastrointestinal complaints with a nurse practitioner dedicated to bowel management and working collaboratively with the Division of Colorectal and Pelvic Reconstruction.

A sobering finding from this research was that non-white patients with spina bifida at Children’s National were more likely to have had an emergency department visit between 2016-2020 after accounting for all other variables. This indicates a clear need for improving access, communication and quality of care for minority patients with spina bifida. We are increasingly developing our community partnerships with pediatricians and school nurses, and we are accessible by a direct phone line and email to allow for prompt support. We have also established clinics in Prince George’s County in Maryland which will bring the program closer to some minority communities.

The team also found that families of children with spina bifida scheduled for telemedicine visits were much more likely to miss a visit than a child without spina bifida or if the visit was in-person. This has led to changes in how we deploy telemedicine in this population, while still remaining nimble with the option of telemedicine or in-person visits. By screening the family’s ability and desire to use this modality, we hope to reduce missed visits overall.

View the abstracts

poster conclusions

growth of the Children's National Spina Bifida Program

A look at the Children’s National Spina Bifida Program

The Spina Bifida Program at Children’s National Hospital, led by co-directors, Christina Ho, M.D., and Briony Varda, M.D., has seen impressive growth and there are plans to continue expanding the program. Drs. Ho and Varda share insights on the multidisciplinary care being provided, along with their plans for the future of the program.

Q: How would you describe the growth of the program?

A: The growth of the Spina Bifida Program has been remarkable! The graph below really shows it all (more than a 25% increase in patient visits in the past year). We currently hold multidisciplinary programs including providers from neurosurgery (Robert Keating, M.D.), orthopaedic surgery (Matthew Oetgen, M.D.), physical medicine and rehabilitation (Mi Ran Shin, M.D.), urology (Briony Varda, M.D. and Christina Ho, M.D.), and expanded to include bowel management (Celicia Little, N.P.), gynecology (Allison Mayhew, M.D.) for our adolescent patients, as well as a dedicated nurse, Nicole Allentuck, R.N., and program associate, Christine Scott.

We are extremely proud of how the program has grown, particularly through the past two years, with the advent of our adolescent clinic and having a dedicated supportive team that ensures we have significant re-engagement of patients who had previously been lost to care. We are also working with the Prenatal Pediatrics Institute at Children’s National to enhance our prenatal care for patients diagnosed with spina bifida.

growth of the Children's National Spina Bifida Program

Q: What advancements is the spina bifida program making that benefit patients?

A: We have developed a transition clinic for our adolescent spina bifida patients to help address goals of care, independence with care and readiness for transition to adult providers. Our program coordinator, Celicia Little, N.P., also oversees our bowel management program to provide specialized bowel management care for our patients. We have been working on educational information specific to different areas within spina bifida, including how to catheterize, common medications, bowel management and anticipatory guidance. This helps to provide longevity for our patients as well.  We are evaluating ways to decrease visits to the emergency department and ensure appropriate antibiotic usage with proper diagnoses of urinary infections in patients who perform CIC.  To further our goal of providing longitudinal care within our program, we have engaged gynecology colleagues to see patients within our adolescent clinic and begin promoting independence through perpetuated discussions (e.g., are they able to schedule their own physician appointments or grocery shop for themselves?) in preparation for adult transitional care. Additionally, we readily offer telehealth visits for convenience and in hopes of easing access to care.

Q: Looking ahead, what’s next for the Spina Bifida Program? How will we continue to measure success?

A: We are excited to continue expanding our Spina Bifida Program. We currently care for more than 500 patients within the Washington, D.C., Maryland and Virginia areas. We want to continue to include patient narratives through our research initiatives to inform quality of care, including decreasing E.D. utilization and needless antibiotic use. We also want to expand our adolescent program to include sexual healthcare as they transition to adult care with our adult collaborators within MedStar and GWU. We would like to provide more comprehensive care, improve access to care, and ensure patients and families have utilization of the armamentaria of medical resources available at Children’s National.

DNA strands

Whole genome sequencing solves precocious puberty case

DNA strands

By conducting whole-genome sequencing, doctors were able to discover the cause of a patient’s severe precocious puberty.

A true medical anomaly — a patient with severe precocious puberty starting in infancy later developed bilateral testicular tumors. Despite extensive testing at multiple other hospitals, no one had been able to understand the underlying cause of his precocious puberty. That is until now, through a study led by Andrew Dauber, M.D., M.M.Sc., chief of Endocrinology at Children’s National Hospital.

The hold-up in the field

Before receiving care at Children’s National, the patient’s diagnostic workup was limited by genetic testing modalities and the ability to enroll him in an innovative research protocol.

Moving the field forward

“We were able to enroll the patient in a research protocol that allowed them to sequence his whole genome,” says Dr. Dauber. “Both in a DNA sample from his blood as well as in a sample from one of his testicular tumors, which was being removed surgically.”

Dr. Dauber then performed an analysis of the genome data and found that the patient had a mutation in the luteinizing hormone receptor (LHR), which was present in the testicle but not in his blood. This is called a somatic mutation. The LHR receives the signal from the pituitary gland, which tells the testicle to make testosterone. In this case, the LHR is always turned on, which makes him develop Leydig cell tumors in his testes, overproducing testosterone, causing him to have very early puberty.

By conducting whole-genome sequencing of the tumor and blood samples, the patient was confirmed to have bilateral, diffuse Leydig cell tumors harboring the somatic gain-of-function p.Asp578His variant in the LHCGR gene.

This mutation had been identified before in patients with isolated tumors but never in someone with diffuse bilateral tumors.

The patient benefit

By using cutting-edge genomic approaches, medical providers can identify unknown causes of endocrine disorders. It also stresses the importance of the clinical team working with translational researchers to determine answers for patients.

“With a more definitive diagnosis and understanding of what these tumors are, researchers can better counsel the family about the treatment options,” says Dr. Dauber. Other members of the Children’s National team that contributed to this work include Seth Berger, M.D., Ph.D.; Daniel Casella, M.D.; and Emmanuèle C Délot, Ph.D.

You can read the full study, Precocious Puberty in a Boy With Bilateral Leydig Cell Tumors due to a Somatic Gain-of-Function LHCGR Variant, in the Journal of the Endocrine Society.

girl playing basketball

Sphincter reconstruction offers new hope for children with Hirschsprung disease

girl playing basketball

After surgery, patients reported sleeping better, higher productivity, the ability to participate in sports and be away from home with confidence.

A new surgical procedure successfully addresses a common lingering challenge — incontinence – faced by some families with young children who have undergone surgery for Hirschsprung disease. This first-of-its kind procedure was pioneered by surgeons in the Division of Colorectal and Pelvic Reconstruction at Children’s National Hospital, led by Division Chief Marc Levitt, M.D.

The 12-month outcomes for early recipients of the procedure appear in the Journal of Pediatric Surgery.

Why it matters

“The goal of surgery for Hirschsprung disease is to give a child a chance to have normal bowel function, which plays a significant role in their quality of life,” says Dr. Levitt, who served as senior author on the study. “But sometimes after a child receives their pull-through operation — the first surgical step to treat Hirschsprung — they continue to be incontinent. This novel follow-up procedure is offering these kids and their families new hope for a more normal life.”

Hirschsprung disease is a congenital condition that affects one in 5,000 children each year. Children with this condition develop a host of health problems including intestinal blockage and severe constipation, caused by the inability of the colon, or large intestine, to work properly.

The pull-through procedure is the best treatment for children with Hirschsprung disease. The procedure removes the portion of the intestine that does not function so that the child can regain control.

However, after the procedure, some children continue to experience incontinence that requires routine enemas for their entire lives. Before now there was no solution to this problem.

Why we’re excited

The new pilot study shows long-term outcomes for seven patients between the ages of 2 and 18 who underwent the novel technical approach called sphincter reconstruction. Each of the seven were diagnosed with an anatomic or physical issue contributing to their incontinence. It was during a repair procedure for the first patient that Dr. Levitt and his team had the idea of a technique for sphincter reconstruction. After that, six more patients with similar anatomy were offered the procedure.

Four of the six now have normal bowel function. They reported sleeping better, higher productivity, the ability to participate in sports and be away from home with confidence. The remaining two have behavioral conditions that have delayed their progress but are on their way to similar success.

The patient benefit

“Parents and caregivers have told us repeatedly about how much enemas negatively impact their family quality of life,” says Dr. Levitt. “That’s what makes this exciting — this validated surgical approach offers new hope for families who previously thought their child would face a lifetime of issues that would limit their freedom. Now, we finally have something to offer.”