Gastroenterology & GI Surgery

Maureen Lyon, Ph.D.

Pilot program improves well-being of families during advanced care planning


Children with life-limiting rare diseases and their caregivers face tremendous stress and anxiety about the heart-breaking decisions before them. A new intervention – designed at Children’s National Hospital to support the palliative needs of these families – improved their spiritual and emotional well-being, according to new research published in the journal, Pediatrics.

Called FACE Rare (FAmily CEntered Pediatric Advance Care Planning Intervention for Rare Diseases), the counseling tools were found to be safe, effective and increased feelings of peace among families in this underserved population.

“Seventy-four percent of the families in that intervention group reported feelings of sadness, yet 100% reported our pilot intervention was a worthwhile experience,” said Maureen Lyon, Ph.D., a clinical psychologist and principal investigator at the Center for Translational Research at Children’s National. “If you’re talking about the possibility that the worst thing in the world would happen to you – that your child might die, and what you would want for them – the families found that our intervention helped. They had a place to process their feelings and consider what would be important to their child.”

The big picture

A rare disease is defined as any condition affecting fewer than 200,000 people in the United States. In pediatrics, these diseases often require constant caregiving and require families to face the cruel reality that the diagnosis may be life-limiting. In such cases, clinical teams often decide that conversations about advanced care planning (ACP) are needed.

The pilot-phase, randomized trial enrolled patients from Children’s National between 2021 and 2023. Research nurses underwent two days of training to be certified in the new intervention. Families assigned to the new approach received three, weekly 60-minute sessions and were evaluated using evidence-based assessment tools, including the Carer Support Needs Assessment Tool/Action Plan and the Next Steps: Respecting Choices Pediatric ACP Conversation. Measures of anxiety and spiritualization were tracked, and families returned after three months for follow-up.

Patients had a range of diagnoses that put tremendous strain on the caregivers, including complex digestive disorders, white-matter diseases and rare forms of epilepsy. Yet the caregivers expressed similar challenges: having time for themselves during the day, knowing what to expect in the future for their child’s care, and managing financial, legal and work issues.

What we found

Reinforcing the need to improve engagement and support for these families, the investigative team found that those who received the FACE Rare intervention reported higher levels of spiritual meaning and peace than those who received “treatment as usual.” All families living below the poverty line reported greater anxiety, and noteworthy to the team, black caregivers were less likely to report caregiver distress than non-black caregivers.

Dr. Lyon said future research needs to understand better how families respond to the challenges of rare diseases and unique social determinants of health that can change the approach to care.

“In some cultures, and families, having strong feelings is discouraged,” Dr. Lyon said. “We want to give families and caregivers space to have these emotions and think about what would be important for their child, if the worst were to happen. They appreciated that they participated in the program and had the space to consider these difficult questions.”

Read the full study, “Advance Care Planning for Children with Rare Diseases: A Pilot RCT,” in Pediatrics.

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
  • 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.

illustration of the gastrointestinal tract

Children’s National to host Pediatric Inflammatory Bowel Disease Research Days Meeting

illustration of the gastrointestinal tractThe division of Gastroenterology, Hepatology and Nutrition at Children’s National Hospital is proud to host the Pediatric Inflammatory Bowel Disease Research Days (PIBDRD) Meeting from April 4-5, 2024.

This two-day event will review recent advances in pediatric Inflammatory Bowel Disease (IBD) research, identify gaps in knowledge in pediatric IBD and identify target areas for future pediatric IBD research. Underlying themes will include sex differences in presentation, disease course and response to treatment; growth; nutrition; and other pediatric chronic inflammatory conditions.

This two-day event offers 13 CME credits and features a robust lineup of experts in the field of Inflammatory Bowel Disease and other chronic inflammatory conditions.

To review the this year’s agenda and register to attend, visit ChildrensNational.org/PIBDRD.

Ian Leibowitz

In the News: Advancing innovations in pediatric gastroenterology and hepatology

“The future is in AI and machine learning and how it allows large data sets to be utilized to a level of understanding that we currently don’t have…We have very rare monogenetic disorders where single gene is the cause of certain inflammatory valve diseases in young children and we’re starting to learn about what’s the right therapy by that gene and personalizing medicine… Not just precision medicine (which is better for a population) but really personalizing medicine.”

Learn more about what Ian Leibowitz, M.D., division chief of Gastroenterology, Hepatology and Nutrition Services, says as he discusses advances in clinical care algorithms that facilitate the timely diagnosis of critical conditions, efforts to increase access to medical and surgical treatment, and broaden awareness among primary care physicians to help ensure care is available and provided as early as possible to all patients.

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)

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)

ARPA-H logo

Children’s National selected as member of ARPA-H Investor Catalyst Hub spoke network

ARPA-H logoThe hospital will advocate for the unique needs of children as part of nationwide network working to accelerate transformative health solutions.

Children’s National Hospital was selected as a spoke for the Investor Catalyst Hub, a regional hub of ARPANET-H, a nationwide health innovation network launched by the Advanced Research Projects Agency for Health (ARPA-H).

The Investor Catalyst Hub seeks to accelerate the commercialization of groundbreaking and accessible biomedical solutions. It uses an innovative hub-and-spoke model designed to reach a wide range of nonprofit organizations and Minority-Serving Institutions, with the aim of delivering scalable healthcare outcomes for all Americans.

“The needs of children often differ significantly from those of adults. This partnership reflects our commitment to advancing pediatric healthcare through innovation and making sure we’re addressing those needs effectively,” said Kolaleh Eskandanian, Ph.D., M.B.A., vice president and chief innovation officer at Children’s National. “Leveraging the strength of this hub-and-spoke model, we anticipate delivering transformative solutions to enhance the health and well-being of the patients and families we serve.”

Children’s National joins a dynamic nationwide network of organizations aligned to ARPA-H’s overarching mission to improve health outcomes through the following research focus areas: health science futures, proactive health, scalable solutions and resilient systems. Investor Catalyst Hub spokes represent a broad spectrum of expertise, geographic diversity and community perspectives.

“Our spoke network embodies a rich and representative range of perspectives and expertise,” said Mark Marino, vice president of Growth Strategy and Development for VentureWell and project director for the Investor Catalyst Hub. “Our spokes comprise a richly diverse network that will be instrumental in ensuring that equitable health solutions reach communities across every state and tribal nation.”

As an Investor Catalyst Hub spoke, Children’s National gains access to potential funding and flexible contracting for faster award execution compared to traditional government contracts. Spoke membership also offers opportunities to provide input on ARPA-H challenge areas and priorities, along with access to valuable networking opportunities and a robust resource library.

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.”

AAP conference logo

Children’s National Hospital at the 2023 American Academy of Pediatrics meeting

There will be over 20 Children’s National Hospital-affiliated participants at this year’s American Academy of Pediatrics National Conference and Exhibition. The meeting will take place in Washington, D.C., from October 20 – October 24. We have compiled their sessions into a mini schedule below.

 

Date Time Presenter Title Division
10/20/2023 8:30 AM Vanessa Madrigal, M.D., M.S.C.E. Section on Cardiology & Cardiac Surgery Program: Day 1 Critical Care
10/20/2023 2:30 PM Kibileri Williams, M.B.B.S Appy Hour: a Current Update on Pediatric Appendicitis Surgery
10/20/2023 3:30 PM Roopa Kanakatti Shankar, M.D., M.S. Precocious Puberty: Puberty Suppression or Not? Endocrinology
10/21/2023 7:30 AM Allison Markowsky, M.D. What is Trending in the Newborn Nursery: Controversies and Evidence Hospital Medicine
10/21/2023 8:00 AM Jessica Herstek, M.D. Joint Program: Council on Clinical Information Technology and Council on Quality Improvement and Patient Safety Medical Informatics
10/21/2023 8:00 AM Nazrat Mirza, M.D., Sc.D. Section on Obesity Program IDEAL Clinic (Obesity Program)
10/21/2023 8:00 AM Hans Pohl, M.D. Section on Urology Program: Day 2 Urology
10/21/2023 9:00 AM Anil Darbari, M.D., M.B.B.S., M.B.A. Constipation: Getting it to Work Out in the End Gastroenterology, Hepatology and Nutrition
10/21/2023 9:00 AM Kibileri Williams, M.B.B.S Appy Hour: a Current Update on Pediatric Appendicitis Surgery
10/21/2023 1:30 PM Olanrewaju (Lanre) Falusi, M.D. Educational Program and Annual Assembly for Medical Students, Residents, and Fellowship Trainees Pediatrician
10/21/2023 2:00 PM Brian Reilly, M.D. Noise 201 – More than Headphones! Otolaryngology
10/21/2023 2:00 PM Erin Teeple, M.D. Hernias, Hydroceles, and Undescended Testicles: When to Wait and When to Operate Surgeon
10/21/2023 3:30 PM Amanda Stewart, M.D. Section on Emergency Medicine Program: Day 2 Emergency Medicine
10/21/2023 3:30 PM Shideh Majidi, M.D., M.S.C.S. Healthcare Disparities in Management of Type 1 Diabetes and Diabetes Technology Endocrinology
10/21/2023 3:30 PM Natasha Shur, M.D. Genetic Testing Boot Camp Geneticist (RDI)
10/21/2023 5:00 PM Danielle Dooley, M.D., M.Phil Connecting School Systems and Health Systems: Successes and Opportunities Pediatrician
10/22/2023 8:00 AM Jaytoya Manget, DNP, FNP Pediatricians and School Attendance: Innovative Approaches to Prevent Chronic Absenteeism
10/22/2023 8:00 AM Simone Lawson, M.D. Section on Emergency Medicine Program: Day 3 Emergency Medicine
10/22/2023 8:00 AM Hans Pohl, M.D. Section on Urology Program: Day 3 Urology
10/22/2023 1:00 PM Lenore Jarvis, M.D., M.Ed. Section on Early Career Physicians Program
10/22/2023 5:00 PM Brian Reilly, M.D. Pediatric Hearing Loss: What’s New in Diagnostics, Prevention and Treatments Otolaryngology
10/23/2023 8:00 AM Rosemary Thomas-Mohtat, M.D. Point-of-Care Ultrasound Fundamentals Course Emergency Medicine
10/23/2023 9:00 AM Matthew Oetgen, M.D., M.B.A. Section on Radiology Program: Imaging Diagnosis and Management of Osteoarticular Infections Orthopaedic Surgery and Sports Medicine
10/23/2023 9:00 AM Christina Feng, M.D. Masses for the Masses: Abdominal Masses in Children Surgeon
10/23/2023 9:00 AM Narendra Shet, M.D. Section on Radiology Program: Imaging Diagnosis and Management of Osteoarticular Infections Radiology
10/23/2023 9:00 AM Shireen Atabaki, M.D., M.P.H. Section on Advances in Therapeutics and Technology Program Telemedicine
10/23/2023 1:00 PM Brian Reilly, M.D. Pediatric Otolaryngology: Back to Basics Otolaryngology
10/23/2023 1:00 PM Sonali Basu, M.D. Point-of-Care Ultrasound Critical Competency Course CCM
10/23/2023 1:00 PM Vanessa Madrigal, M.D. Joint Program: Section on Bioethics, Section on LGBT Health and Wellness and Section on Minority Health, Equity, and Inclusion Critical Care
10/23/2023 2:00 PM Rebecca Persky, M.D. Menstrual Disorders: Primary or Secondary Amenorrhea Endocrinology
10/23/2023 5:00 PM Christina Feng, M.D. Masses for the Masses: Abdominal Masses in Children Surgeon
10/24/2023 9:00 AM Vanessa Madrigal, M.D. Section Showcase: Applying Ethics Principles and Tools To Advocate for Vulnerable Populations Critical Care

 

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.

doctors doing heart surgery

Novel dye may improve outcomes for liver surgery

Researchers at Children’s National Hospital and the National Cancer Institute (NCI) have developed a novel, near‐infrared dye that can help surgeons identify structures and detect leakage during liver surgery, offering a promising tool that may someday improve outcomes for patients undergoing gastroenterology procedures.

The problem has vexed the medical community for some time: Despite advances in bile leak detection, only a third of bile duct injuries are found at the time of surgery, extending hospital stays and increasing the risk of liver failure, sepsis and even death.

Why we’re excited

The new dye – known as Bile Label Dye 760 (BL-760) – provided several promising advantages over existing surgical tools during non-clinical testing. When administered into the liver, BL‐760 was excreted and visible in bile ducts within minutes, without significant or prolonged impact on organ tissue. Its fluorescence against the surgical field also provided a superior view of leaks, offering an opportunity to treat the patient while still in the operating room. Details were published recently in Lasers in Surgery and Medicine.

“BL-760 is a promising option for monitoring the health of the liver during surgery, and we are excited to continue our testing and hopefully see first-in-human trials in the future,” said Richard Cha, Ph.D., principal investigator at the Sheikh Zayed Institute of Pediatric Surgical Innovation, part of the NIH-funded team that developed the dye.

doctors doing heart surgery

The new dye – known as Bile Label Dye 760 (BL-760) – provided several promising advantages over existing surgical tools during non-clinical testing.

The big picture

The dye could significantly advance hepatobiliary and pancreatic (HPB) procedures in years to come. More than 40,000 new cases of liver cancer are diagnosed each year, causing more than 30,000 deaths in the U.S. alone. Gallbladder disease is also one of the most common conditions in the U.S., with more than 20 million people affected annually. In pediatrics, gall bladder removal, or cholecystectomy, is on the rise.

Procedures to treat these diseases have many challenges. During minimally invasive surgery, including laparoscopic cholecystectomy or robot-assisted hepatectomy, surgeons can struggle to precisely identify the bile ducts because of a narrow field of view or because they are embedded in fat or other tissues. Existing FDA-approved contrast agents that can enhance the biliary anatomy such as indocyanine green (ICG) aren’t well tailored for HPB surgeries because of the timing of their administration and their inferior ability to highlight biliary structures. In addition, while pre-operative imaging has improved outcomes, it cannot be used to predict leaks from the surgery itself.

What’s ahead

BL-760 was created at Children’s National and NCI by a team of experts in surgery and engineering, led by Anthony Sandler, M.D., senior vice president and surgeon-in-chief. They hope to continue their testing on the dye in the months ahead. The team was encouraged when Michele Saruwatari, M.D., a Joseph E. Robert Fellow in the Sheik Zayed Institute, recently won first place in the resident and fellow abstract presentation competition at the annual meeting of the Society of American Gastrointestinal and Endoscopic Surgeons.

“Having this tool in the operating room will change outcomes for our pediatric patients,” Sandler said.  “This dye has the potential to become an essential step in liver cancer surgery, cholecystectomy and treating other pediatric diseases like biliary atresia. I look forward to the day when we can get it in the hands of surgical teams.”

clinician measuring obese child's waist

Surgeon says treatment silos in childhood obesity need to end

clinician measuring obese child's waist

An editorial in one of the top-ranked pediatric journals — Lancet Child & Adolescent Health — asserts that researchers studying obesity in children and adolescents should stop comparing medication versus bariatric surgery to see which is more effective.

An editorial in one of the top-ranked pediatric journals — Lancet Child & Adolescent Health — asserts that researchers studying obesity in children and adolescents should stop comparing medication versus bariatric surgery to see which is more effective.

Evan Nadler, M.D., director of the Child and Adolescent Weight-loss Surgery Program at Children’s National Hospital, writes that patients don’t want or need the answer to that question. Instead, the two treatment approaches should work together. He cites the field of oncology, where medicine and surgery work hand-in-hand as a comprehensive treatment plan that is individualized for each person’s unique condition.

Why it matters

“The obesity field has long been evaluating isolated interventions. There is a battle between those who favor medical therapy and those who favor surgical therapy,” Nadler writes. “Would it not make more sense for patients if we consider all available options until the desired weight loss is achieved rather than be a staunch advocate of the therapy that we personally like the best?”

According to Nadler, the American Academy of Pediatrics’ 15-year-process to release their first guidelines for treatment of childhood obesity is a consequence of these same silos.

“If medical and surgical oncologists figured out how to work together decades ago, why is it taking so long for practitioners who treat obesity to join forces and use combination therapy for their patients?”

Read the editorial in the Lancet Child & Adolescent Health.

USA line art map with a wheat plant icon

State of Celiac Disease in the United States

USA line art map with a wheat plant iconVahe Badalyan, M.D., director of the Children’s National Celiac Disease Program, discusses the current state of celiac disease in the United States, including diagnosis and care among pediatric populations.

Q: In your opinion, how would you classify the state of Celiac Disease among children in the United States as it compares to 10 years ago?

A: Celiac disease in the United States is increasingly recognized as a common disorder of childhood. While this can partly be attributed to improved recognition and more testing by primary care providers, “true incidence” of this immune-mediated disease is also said to be rising, independent of the screening practices.

While there is a larger variety of gluten-free food options available today, these options are often more costly than their gluten-counterparts. Additionally, gluten-free food options are not covered by insurance companies. With inflation and rising food prices, there is a real concern for increased economic burden and food insecurity for the families of children with celiac.

Q: Are there any misnomers about Celiac Disease that you think are important to address?

A: Classic symptoms of celiac disease, including diarrhea and malnutrition, now occur in a minority of celiac patients. There is a rising proportion of milder or asymptomatic presentation at the time of diagnosis. Paired with the fact that most celiac patients identified through mass-screening did not have a family history of celiac disease (~90%) or gastrointestinal symptoms (70%), one may need to have a high index of suspicion for children with atypical presentation, such as neurologic symptoms, iron and vitamin D deficiency.

Q: What excites you about the future of treatment for Celiac Disease?

A: I am encouraged that researchers across the globe are testing new, pharmacologic therapies for celiac disease. Some of the tested compounds, such as latiglutenase or TAK-062 , involve breaking down gluten-using enzymes, while others, such as TAK-101 aim to induce immune tolerance. These compounds are still at the early stages of the long and arduous process of drug development and approval. Current randomized trials typically include adults, although some recently opened enrollment to adolescents. While there are no guarantees, I am cautiously optimistic that in the future we will have pharmacologic, non-dietary treatment options for celiac disease.

Q: How is Children’s National a leader in the field of pediatric Celiac Disease?

A: Concerns about gluten exposure can be quite stressful for our patients and families, which can lead to hypervigilance, anxiety and even depression. We are fortunate to have a full-time psychologist, Shayna Coburn, Ph.D., as part of our Multidisciplinary Celiac Disease Program team. This allows us to treat not only physiological symptoms and concerns associated with celiac disease, but to also evaluate the psychological problems that may arise as a result of the condition.

The role of the gut microbiome in pediatric obesity and bariatric surgery

Gut microbiome changes after bariatric surgery in children and adolescents are largely unknown.

In a review led by Cynthia Omoge Akagbosu, M.D., a gastroenterology fellow at Children’s National Hospital, a team examined the magnitude of childhood obesity, the importance of the developing microbiome in establishing metabolic pathways and the future direction for the potential development of microbiome-based therapeutics to treat obesity.

Childhood obesity is an epidemic in the United States that impacts nearly 20% of children. Severe childhood obesity is associated with complications including hypertension, fatty liver disease and type 2 diabetes mellitus. Pediatric bariatric surgery is an effective treatment for childhood obesity, however, there is limited research into the role of the gut microbiome after weight-loss surgery in children.

Read the full review in the International Journal of Molecular Sciences.

This review was co-authored by Evan Nadler, M.D., director of the Child and Adolescent Weight-loss Surgery Program at Children’s National and Suchitra Hourigan, M.D., chief of the Clinical Microbiome Unit, Laboratory of Host Immunity and Microbiome at the NIH/NIAID.

asthma inhaler

New study links T cells and airway muscle in obese children with asthma

asthma inhaler

The study found that T cells from obese children with asthma adhere more to the airway muscle than T cells from lean children with asthma.

Obesity-related asthma is a distinct type of asthma that is increasing among children due to an increase in obesity. It is associated with high disease burden that is not responsive to currently available asthma therapies. Researchers from Children’s National are leading the way with the first study of its kind to show a link between T cells and airway muscle. This unique work represents an important step forward in understanding pediatric obesity-related asthma and has the potential to inform the development of new treatments.

What’s been the hold-up in the field?

Researchers do not understand the mechanisms that underlie obesity-related asthma. This lack of knowledge directly affects the ability to find medications that are effective against this disease.

How does this work move the field forward?

The study found that T cells from obese children with asthma adhere more to the airway muscle than T cells from lean children with asthma. This adhesion of T cells to airway muscle causes the muscle to be more contractile. This is the first study to link immune cells in obese children with asthma with airway-specific changes.

How will this work benefit patients?

The study has identified a mechanism where immune cells react with airway muscle. As part of this, few proteins will be studied further to see if they can be targets for medications specifically for obesity-related asthma.

How is Children’s National leading in this space?

Children’s National is leading in this space by initiating a first of its kind study to show the link between the T cells and airway muscle.

Authors on the study from Children’s National Hospital include: Deepa Rastogi, M.D., M.S., Changsuek Yon, Ph.D., and David A. Thompson.

You can read the full study, Crosstalk Between CD4+ T Cells and Airway Smooth Muscle in Pediatric Obesity-related Asthma, in the American Journal of Respiratory and Critical Care Medicine.

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)

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.”

Pediatric Colorectal Surgery Tips and Tricks

New textbook offers pediatric colorectal surgery tips and tricks

Pediatric Colorectal Surgery Tips and Tricks

The cover of the new Pediatric Colorectal Surgery Tips and Tricks textbook, written and edited by Marc A. Levitt, M.D.

The first edition of Pediatric Colorectal Surgery Tips and Tricks, a textbook written and edited by Marc A. Levitt, M.D., is now available.

The book, Dr. Levitt’s fourth textbook, focuses on sharing the knowledge he’s earned as the most experienced active pediatric colorectal surgeon in the world. The book provides inside expert information about the surgical and medical care of children with colorectal conditions.

The book includes surgical techniques and tips for medical management of:

  • Anorectal and cloacal malformations
  • Hirschsprung disease
  • Function constipation & fecal incontinence
  • Post-PSARP and Post Hirschsprung disease pull-through problems
  • Bowel management
  • Nursing care and contributions

The Pediatric Colorectal Surgery Tips and Tricks, 1st edition textbook can be purchased here.

Dr. Levitt is chief of the Division of Pediatric Colorectal and Pelvic Reconstruction at Children’s National Hospital. He has cared for children from all 50 states and 76 countries and has performed more than 15,000 pediatric colorectal procedures, which is more surgeries covering the entire spectrum of problems involving the colon and rectum than any other surgeon in the world.

He is also a driving force around the world in enhancing the care of children with colorectal and pelvic reconstructive needs through the development of specialized, integrated and collaborative surgical centers. He is internationally recognized as an expert in conditions affecting the newborn, pediatric and adolescent population affected with anorectal malformations (imperforate anus), cloacal malformations, Hirschsprung disease, as well as a variety of conditions leading to fecal incontinence, such as spinal conditions and functional constipation.

He has written four textbooks and authored over 300 scientific articles on these subjects. His work extends beyond providing direct surgical care to educating medical students, medical doctors, surgeons and nurses, as well as developing collaborating centers throughout the world to ensure that all children have access to quality colorectal care. He has hosted hundreds of surgeons and nurses from hospitals across the globe, who have sought out education and training on advanced colorectal surgical techniques, management of patients and research outcomes. Dr. Levitt is the founder of the Colorectal Team Overseas (CTO), a group of international providers that travel to the developing world to provide care and teaching for patients with colorectal needs. He co-founded the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC), which is an organization of collaborating colorectal centers across the globe.

Girl looking at food without appetite

The psychosocial impact of food intolerances

Girl looking at food without appetite

Digestive illnesses involving food intolerances can bring unique challenges to pediatric patients and clinical management.

Digestive illnesses involving food intolerances bring unique challenges to clinical management. This is mainly due to their impacts on psychological and social functioning and reliance on elimination diets as primary treatment strategies.

In a review article published in the journal of Gastroenterology Clinics of North America, experts summarize psychosocial factors to consider in food intolerances as part of a larger special issue on topics pertaining to psychogastroenterology.

“Both pediatric and adult patients with celiac disease, non-celiac gluten sensitivity and eosinophilic esophagitis report increased anxiety-related symptoms,” says Shayna Coburn, Ph.D., psychologist at Children’s National Hospital and lead author of the article. “They also report hypervigilance-related eating, social ramifications including stigma and isolation and reduced quality of life directly related to food intolerances and dietary management.”

Experts at Northwestern University and Children’s Hospital Colorado also aided in this research.

The hold-up in the field

Integrated approaches using properly trained registered dietitians and clinical psychologists should be a mainstay for patients requiring long-term elimination diet treatment to mitigate some of these negative impacts, Coburn explains.

“Traditionally, gastrointestinal conditions are studied from a medical and biological perspective,” Coburn says. “Only recently has there been more emphasis on psychosocial factors in living with these conditions.”

The authors provide a narrative review to synthesize the clinical and research knowledge on the topic and inform practitioners from a range of disciplines.

How Children’s National Hospital leads the way

The Celiac Disease Program at Children’s National provides a specialized destination for families in need of evidence-based care and behavioral research opportunities for celiac disease and related conditions.

This work brings attention to the multitude of risks, stressors and challenges associated with food intolerances and aims to validate the struggles many face.

“We hope this article will serve as a reference for patient advocates to ensure appropriate emotional and behavioral support is provided when needed,” Coburn says.

This study brings together the similarities and differences in several conditions, and it is powerful how similar the challenges are across the diagnoses.

“It inspires us to consider more cross-cutting collaborative work to gain a bigger picture on the needs of patients with food intolerances and special diets,” Coburn says.