sick child in palliative care hospital bed

How POEM may change the standard of care for pediatric achalasia

sick child in palliative care hospital bed

Today, Drs. Petrosyan and Kane have performed over 35 POEM procedures for children to resolve esophageal achalasia symptoms.

In 2016, pediatric surgeons Mikael Petrosyan, M.D., and Timothy Kane, M.D., published an article in the Journal of Pediatric Surgery reviewing their experience with the surgical treatment of achalasia and how peroral endoscopic myotomy (POEM) was a new technique being used at Children’s National Hospital to treat esophageal achalasia in children.

The procedure, first used in adults to treat esophageal achalasia, uses a different approach than the current minimally invasive standard of care for children, the Heller myotomy. At the time of the initial study, the team had performed only a few POEM procedures for children but was already starting to see the promise this procedure could offer if done correctly.

While esophageal achalasia affects only about one in every 1 million kids (versus one in 100,000 for adults), the condition, which occurs when the esophagus muscles fail to function properly and the lower sphincter of the esophagus doesn’t relax enough to allow food into the stomach, can have serious impacts on daily life. The tight sphincter may cause food backup, heartburn, chest pain, and many other painful symptoms. Unfortunately, medical interventions including balloon endoscopy or Botox injections, are only temporary fixes that don’t last longer than a month or so before further treatment is needed. For kids who have long lives ahead of them, a surgical solution is the best hope for permanent symptom relief.

At the time of the 2016 study, Dr. Kane said that, “Heller myotomy works very well for most kids — that’s why it’s the standard of care. Our study found that patients who underwent the POEM procedure experienced the same successful outcomes as Heller patients, and we already knew from adult data that POEM patients reported less pain following surgery — a win-win for children.”

Today, Drs. Petrosyan, the associate chief, and Kane, the chief, of General and Thoracic Surgery at Children’s National, have performed over 35 POEM procedures for children to resolve esophageal achalasia symptoms. Increasingly, they find themselves recommending the POEM for many reasons, including, of course, the faster recovery. Kids who have a POEM procedure also often go home in one to two days following surgery and report less pain — typically a sore throat from the endoscopy and the anesthesia, but very little pain at the surgical site.

The surgeons say that the while it takes a steep learning curve to perfect the technique of using POEM in children due to the size of the available instruments to perform the procedure coupled with the challenge of a child’s tiny esophagus, the benefits for patients are well worth it.

“There’s only a single incision in the esophagus, and no incision in the abdomen,” says Dr. Petrosyan. “Kids tolerate the surgery really well, report very little pain, and recover very quickly with minimal complications.”

Even better, he continues, unlike the Heller myotomy, POEM can be performed at any point in treatment, even if other therapies or surgical interventions (including a Heller myotomy) have been previously performed. It can also be repeated if needed — though so far, they haven’t needed to do any further revisions in the population at Children’s National.

Drs. Petrosyan and Kane have performed successful POEM procedures for children with esophageal achalasia between the ages of four and 12. Younger children, (under a year of age) with smaller anatomy, continue to be treated using the Heller procedure due to the limitations in size of the surgical instruments.

Children’s National Hospital is one of the only children’s hospitals in the country to offer the option of POEM for treatment of these conditions — and Drs. Kane and Petrosyan combined perform more of these procedures than any other pediatric surgeon in the United States.

A forthcoming peer-reviewed study will highlight the use of POEM for this population and weigh its success against the current standards of care for treating children with esophageal achalasia.

In the meantime, the surgeons at Children’s National continue to offer POEM as a primary intervention for children with esophageal achalasia and are also applying the same approach for pediatric gastroparesis as well.

Shikib Mostamand

Functional GI Disorders Clinic helps patients with complex GI conditions

Shikib Mostamand

Shikib Mostamand, M.D., pediatric gastroenterologist at Children’s National Hospital, shares what makes the FGID clinic model unique.

Children’s National Hospital has started a multi-disciplinary Functional GI Disorders (FGID) Clinic to treat patients with complex gastroenterology disorders and illnesses that are unique to children. Shikib Mostamand, M.D., pediatric gastroenterologist at Children’s National shares what makes this clinic model unique.

What is the purpose of this clinic?

The purpose of this clinic is to establish a multi-disciplinary clinic to diagnose and treat functional GI Disorders (FGIDs) using a comprehensive, multi-modal approach to chronic abdominal pain and sensory predominant FGIDs (functional abdominal pain/visceral hyperalgesia, irritable bowel syndrome, chronic nausea, etc.). These are complex patients with various biopsychosocial and pathophysiologic mechanisms underlying their abdominal pain.

The clinic endeavors to serve as a unified home for their care. It strives to be the ideal venue to utilize diverse primary care, subspecialty and therapeutic offerings for managing chronic abdominal pain and related FGIDs.

How will this work benefit patients?

We have adopted a multi-disciplinary approach where the pediatric gastroenterologist, GI psychologist, psychiatrist and a pain medicine specialist work together to comprehensively take care of patients and improve their quality of life. This clinic model will allow us to capture valuable data and generate research questions and data to help us better understand pediatric FGIDs and improve care. Additionally, this will minimize the number of visits patients will have to make, as they will see multiple specialties in the same visit at the same time.

How is Children’s National leading in this space? How unique is this work? 

There are only a few other institutions that provide a collaborative, multi-disciplinary approach like this. These programs focus only on functional abdominal pain and not other functional GI disorders.

This model and approach to FGID is unique to Children’s National and not offered at many leading pediatric institutions. Thus, we are working towards innovating the care and creating a future standard for taking care of children with FGIDs.

common food allergens

Psychotherapeutic treatment for psychosocial concerns related to food allergy

common food allergens

Pediatric food allergy is a growing public health concern, with 8 percent of children in the United States affected. Although new treatments for food allergies are being developed, the vast majority of cases are currently managed by daily evaluation of food safety and vigilance for accidental allergen exposure and allergic reactions. This often impacts patients’ and caregivers’ quality of life and overall psychosocial functioning.

In a recent article published in the Journal of Allergy and Clinical Immunology: In Practice, Linda Herbert, Ph.D., and Audrey DunnGalvin, Ph.D., provide a review of mental health concerns related to food allergy. The authors present two cases in which patients received psychological services for food allergy-related anxiety. For both cases, treatment resulted in decreased anxiety and improved food allergy management/oral immunotherapy treatment engagement.

The authors also discuss unmet food allergy-related psychosocial needs, including the lack of food allergy-specific anxiety measures, psychosocial domains that warrant investigation, development of supportive interventions for patients engaging in allergen immunotherapy and the lack of adequate mental health providers with food allergy expertise.

Read the full article in the Journal of Allergy and Clinical Immunology: In Practice.

foods that cause allergies

Patients’ perspectives and needs on novel food allergy treatments

foods that cause allergies

Food allergy is a major public health concern in many countries around the world. In the United States, studies suggest that it affects up to 8% of children and 10% of adults and is responsible for an emergency room admission every three minutes. Historically, the only treatment for food allergy has been complete allergen avoidance combined with rescue medications when accidental exposures occur. Fortunately, advances in food allergy research over the past decade have yielded new treatments, but with these new treatments come new stressors.

In a recent study published in the journal Current Treatment Options in Allergy, Linda Herbert, Ph.D., and colleagues provide an overview of the current state of the literature regarding patients’ and caregivers’ food allergy experiences and needs within the United States. The authors also put forth a set of recommendations regarding how best to proceed with patient-centered development and evaluation of new food allergy treatments.

Read the full study in Current Treatment Options in Allergy.

NASPGHAN meeting logo

Children’s National Gastroenterology team presents virtually at NASPGHAN conference

NASPGHAN meeting logo

The North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) conference provides experts with an advanced understanding of the normal pediatric development and physiology of diseases of the gastrointestinal tract and liver.

The Children’s National Hospital gastroenterology team was due to present in-person at the conference but were unable to as a result of the COVID-19 pandemic. Instead they presented educational sessions virtually to gastroenterology experts across the country. The presentations spanned a variety of topics and are listed below:

  • Trisomy 21: Not all duodenal abnormalities are Celiac Disease
  • Celiac Kids Research Consortium (CeliacKIDS)
  • Postoperative complications in pediatric IBD patients on biologic therapy undergoing intra-abdominal surgery
  • 6 week infliximab trough levels as predictor of therapeutic maintenance infliximab trough levels and patient outcomes
  • Inflammatory bowel disease characteristics in pediatric patients of South Asian origin in the United States
  • Investigating treatment response rates in pediatric inflammatory bowel disease patients after switching biologics
  • Severely elevated fecal calprotectin in a pediatric patient with persistent giardiasis
  • Persistent hypoglycemia after treatment of gestational alloimmune liver disease (GALD)

The 2021 annual conference will be held on November 4-6 in Nashville, Tennessee.

Lee Beers

Lee Beers, M.D., F.A.A.P, begins term as AAP president

Lee Beers

“The past year has been a stark reminder about the importance of partnership and working together toward common goals,” says Dr. Beers. “I am humbled and honored to be taking on this role at such a pivotal moment for the future health and safety of not only children, but the community at large.”

Lee Savio Beers, M.D., F.A.A.P., medical director of Community Health and Advocacy at the Child Health Advocacy Institute (CHAI) at Children’s National Hospital, has begun her term as president of the American Academy of Pediatrics (AAP). The AAP is an organization of 67,000 pediatricians committed to the optimal physical, mental and social health and well-being for all children – from infancy to adulthood.

“The past year has been a stark reminder about the importance of partnership and working together toward common goals,” says Dr. Beers. “I am humbled and honored to be taking on this role at such a pivotal moment for the future health and safety of not only children, but the community at large.”

Dr. Beers has pledged to continue AAP’s advocacy and public policy efforts and to further enhance membership diversity and inclusion. Among her signature issues:

  • Partnering with patients, families, communities, mental health providers and pediatricians to co-design systems to bolster children’s resiliency and to alleviate growing pediatric mental health concerns.
  • Continuing to support pediatricians during the COVID-19 pandemic with a focus on education, pediatric practice support, vaccine delivery systems and physician wellness.
  • Implementation of the AAP’s Equity Agenda and Year 1 Equity Workplan.

Dr. Beers is looking forward to continuing her work bringing together the diverse voices of pediatricians, children and families as well as other organizations to support improving the health of all children.

“Dr. Beers has devoted her career to helping children,” says Kurt Newman, M.D., president and chief executive officer of Children’s National. “She has developed a national advocacy platform for children and will be of tremendous service to children within AAP national leadership.”

Read more about Dr. Beer’s career and appointment as president of the AAP.

feeding tubes

NIH grant funds development of pediatric feeding tube placement device

feeding tubes

A new grant will help to finalize development of the Pediatric PUMA-G System, the world’s first and only ultrasound-based procedure for placing feeding tubes into the stomach.

Researchers at Children’s National Hospital have received grant funding from the National Institute of Diabetes and Digestive and Kidney Diseases, within the National Institutes of Health (NIH), to finalize development of the Pediatric PUMA-G System, the world’s first and only ultrasound-based procedure for placing feeding tubes into the stomach. The funding will also support the first clinical trial of this technology in pediatric patients.

“Children’s National was chosen because we have a strong record of innovating pediatric devices and surgical procedures through the Sheikh Zayed Institute and we have a busy clinical interventional radiology service,” says Karun Sharma, M.D., Ph.D., director of Interventional Radiology and associate director of clinical translation at the Sheikh Zayed Institute for Pediatric Surgical Innovation (SZI) at Children’s National. “We are proud to be a part of this collaboration that will potentially help improve care of pediatric patients who cannot tolerate feeding by mouth.”

The feeding tubes are vital for children who cannot eat or swallow and require liquid nutrition (known as enteral feeding). Common feeding tube placement procedures for children may expose them to risks from invasive surgical tools or from ionizing radiation, which may lead to cancer in young patients at elevated rates. The PUMA-G System is less invasive and uses ultrasound to help physicians image the body during the procedure.

The grant, totaling $1.6M, will clinically evaluate the Pediatric PUMA-G System in collaboration with CoapTech, a biotechnology medical device company and two other premier pediatric medical centers — New York-Presbyterian Morgan Stanley Children’s Hospital and Children’s Hospital of Philadelphia.

Research & Innovation Campus

Boeing gives $5 million to support Research & Innovation Campus

Research & Innovation Campus

Children’s National Hospital announced a $5 million gift from The Boeing Company that will help drive lifesaving pediatric discoveries at the new Children’s National Research & Innovation Campus.

Children’s National Hospital announced a $5 million gift from The Boeing Company that will help drive lifesaving pediatric discoveries at the new Children’s National Research & Innovation Campus. The campus, now under construction, is being developed on nearly 12 acres of the former Walter Reed Army Medical Center. Children’s National will name the main auditorium in recognition of Boeing’s generosity.

“We are deeply grateful to Boeing for their support and commitment to improving the health and well-being of children in our community and around the globe,” said Kurt Newman, M.D., president and CEO of Children’s National “The Boeing Auditorium will help the Children’s National Research & Innovation campus become the destination for discussion about how to best address the next big healthcare challenges facing children and families.”

The one-of-a-kind pediatric hub will bring together public and private partners for unprecedented collaborations. It will accelerate the translation of breakthroughs into new treatments and technologies to benefit kids everywhere.

“Children’s National Hospital’s enduring mission of positively impacting the lives of our youngest community members is especially important today,” said Boeing President and CEO David Calhoun. “We’re honored to join other national and community partners to advance this work through the establishment of their Research & Innovation Campus.”

Children’s National Research & Innovation Campus partners currently include Johnson & Johnson Innovation – JLABS, Virginia Tech, the National Institutes of Health (NIH), Food & Drug Administration (FDA), U.S. Biomedical Advanced Research and Development Authority (BARDA), Cerner, Amazon Web Services, Microsoft, National Organization of Rare Diseases (NORD) and local government.

The 3,200 square-foot Boeing Auditorium will be the focal point of the state-of-the-art conference center on campus. Nationally renowned experts will convene with scientists, medical leaders and diplomats from around the world to foster collaborations that spur progress and disseminate findings.

Boeing’s $5 million commitment deepens its longstanding partnership with Children’s National. The company has donated nearly $2 million to support pediatric care and research at Children’s National through Chance for Life and the hospital’s annual Children’s Ball. During the coronavirus pandemic, Boeing fabricated and donated 2,000 face shields to help keep patients and frontline care providers at Children’s National safe.

Marc Levitt plays with a patient

Reoperation of anorectal malformation repair restores continence, improves quality of life

Marc Levitt plays with a patient

Dr. Levitt has performed over 10,000 surgeries to address the wide spectrum of problems involving the colon and rectum — more than any other full time practicing pediatric surgeon in the world.

Patients with a previously repaired anorectal malformation (ARM) can suffer from complications which lead to incontinence. Reoperation can improve the anatomic result, but its impact on functional outcomes has previously been unclear.

Marc Levitt, M.D., chief of Colorectal and Pelvic Reconstructive Surgery at Children’s National, and Richard Wood, M.D., chief of Colorectal and Pelvic Reconstruction at Nationwide Children’s Hospital, co-led the study when they worked together in Columbus. They performed a retrospective cohort study, from 2014 to 2019, of patients with a previously repaired ARM who underwent another posterior sagittal anorectoplasty (PSARP) procedure, essentially redoing their first procedure. When results from the initial assessment were compared to 12 months after the redo surgery, they found that patients with fecal incontinence after an ARM repair can, with a reoperation, have their anatomy corrected, restoring continence for many and also improving their quality of life.

The study, published in the Journal of Pediatric Surgery, found that at one-year post-redo operation, 50 percent of the patients were on laxatives only, and 75 percent of those patients were completely continent. Overall, 77 percent of the patients were clean (1 or fewer accident per week) after their redo surgery and complication rates were low. Strictures were the most common complication seen after reoperations, as no dilations were performed, but were easily managed with a minor procedure. Surprisingly, 20 percent of patients with expected poor continence potential became fully continent on a laxative-based regimen after redo surgery. Traditionally, many of these children would not even be offered a redo surgery, given their perceived poor potential for bowel control.

The Division of Colorectal & Pelvic Reconstructive Surgery at Children’s National is the first in the mid-Atlantic region to fully integrate surgery, urology, gynecology and gastroenterology into one cohesive program for children. Dr. Levitt is a world-renowned surgeon who has performed over 10,000 surgeries to address the wide spectrum of problems involving the colon and rectum — more than any other full time practicing pediatric surgeon in the world.

This study shows that redo surgeries are a safe and effective option for patients with fecal incontinence after an anorectal malformation repair. The authors hope that the findings will lead to the ability to help more patients who suffer from complications and/or incontinence after a prior repaired ARM and who can benefit from an improvement in their colorectal anatomy.  After a reoperation, patients can expect to have improved quality of life because the outcome gives them more freedom and less worry about soiling accidents.

To access the full article published in the Journal of Pediatric Surgery click here.

US News Badges

Children’s National ranked a top 10 children’s hospital and No. 1 in newborn care nationally by U.S. News

US News Badges

Children’s National Hospital in Washington, D.C., was ranked No. 7 nationally in the U.S. News & World Report 2020-21 Best Children’s Hospitals annual rankings. This marks the fourth straight year Children’s National has made the list, which ranks the top 10 children’s hospitals nationwide.

In addition, its neonatology program, which provides newborn intensive care, ranked No.1 among all children’s hospitals for the fourth year in a row.

For the tenth straight year, Children’s National also ranked in all 10 specialty services, with seven specialties ranked in the top 10.

“Our number one goal is to provide the best care possible to children. Being recognized by U.S. News as one of the best hospitals reflects the strength that comes from putting children and their families first, and we are truly honored,” says Kurt Newman, M.D., president and CEO of Children’s National Hospital.

“This year, the news is especially meaningful, because our teams — like those at hospitals across the country — faced enormous challenges and worked heroically through a global pandemic to deliver excellent care.”

“Even in the midst of a pandemic, children have healthcare needs ranging from routine vaccinations to life-saving surgery and chemotherapy,” said Ben Harder, managing editor and chief of Health Analysis at U.S. News. “The Best Children’s Hospitals rankings are designed to help parents find quality medical care for a sick child and inform families’ conversations with pediatricians.”

The annual rankings are the most comprehensive source of quality-related information on U.S. pediatric hospitals. The rankings recognize the nation’s top 50 pediatric hospitals based on a scoring system developed by U.S. News. The top 10 scorers are awarded a distinction called the Honor Roll.

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.

Below are links to the seven Children’s National specialty services that U.S. News ranked in the top 10 nationally:

The other three specialties ranked among the top 50 were cardiology and heart surgery, gastroenterology and gastro-intestinal surgery, and urology.

ARM index webinar

Colorectal team presents virtual conference sessions

The 6th Annual Alex Pediatric Surgery Congress and 1st Nile of Hope Hospital Congress conference, in cooperation with Colorectal Team Overseas (CTO), provides updates in colorectal, urogenital disorders and pelvic reconstructions in pediatrics. The Children’s National Hospital colorectal team was due to present at the conference in Alexandria, Egypt, in April 2020, but due to the global COVID-19 pandemic the event was indefinitely postponed. Despite this, Marc Levitt, M.D., Colorectal and Pelvic Reconstructive Surgeon at Children’s National, and Founder and Head of the CTO, presented educational sessions virtually to Egyptian surgeons throughout the month of April.

Anorectal malformation case presentation

Surgeons assemble in a virtual Zoom session for a case presentation on anorectal malformations by Marc Levitt, M.D., and the Children’s National colorectal team.

The video conferences allowed surgeons and experts to come together and foster the global collaboration that benefits colorectal teams and patients worldwide. The first session included 70 pediatric surgeons from Egypt and grew to over 128 attendees in the last session. The presentations spanned a variety of topics and can be accessed at the links below:

Joining Dr. Levitt in the discussion were members of the Children’s National colorectal nursing team, including Julie Choueiki, Program Manager, Justine Garofalo, CPNP, Meghan Mesa, Tara Garbarino, CPNP, and Katherine Worst, CPNP-AC. The integrated Children’s National colorectal team elevates the significance of the nursing role in caring for complex patients. For example, cases in the Bowel Management Program require hours of ongoing nursing care. The team demonstrated the partnership that benefits children when surgeons include and value nursing presence in the care of colorectal patients.

Moving forward, the team will bring continued virtual, telehealth collaboration and education. Doing so will expand the potential for more colorectal patients to receive the care they need.

Vittorio Gallo and Mark Batshaw

Children’s National Research Institute releases annual report

Vittorio Gallo and Marc Batshaw

Children’s National Research Institute directors Vittorio Gallo, Ph.D., and Mark Batshaw, M.D.

The Children’s National Research Institute recently released its 2019-2020 academic annual report, titled 150 Years Stronger Through Discovery and Care to mark the hospital’s 150th birthday. Not only does the annual report give an overview of the institute’s research and education efforts, but it also gives a peek in to how the institute has mobilized to address the coronavirus pandemic.

“Our inaugural research program in 1947 began with a budget of less than $10,000 for the study of polio — a pressing health problem for Washington’s children at the time and a pandemic that many of us remember from our own childhoods,” says Vittorio Gallo, Ph.D., chief research officer at Children’s National Hospital and scientific director at Children’s National Research Institute. “Today, our research portfolio has grown to more than $75 million, and our 314 research faculty and their staff are dedicated to finding answers to many of the health challenges in childhood.”

Highlights from the Children’s National Research Institute annual report

  • In 2018, Children’s National began construction of its new Research & Innovation Campus (CNRIC) on 12 acres of land transferred by the U.S. Army as part of the decommissioning of the former Walter Reed Army Medical Center campus. In 2020, construction on the CNRIC will be complete, and in 2012, the Children’s National Research Institute will begin to transition to the campus.
  • In late 2019, a team of scientists led by Eric Vilain, M.D., Ph.D., director of the Center for Genetic Medicine Research, traveled to the Democratic Republic of Congo to collect samples from 60 individuals that will form the basis of a new reference genome data set. The researchers hope their project will generate better reference genome data for diverse populations, starting with those of Central African descent.
  • A gift of $5.7 million received by the Center for Translational Research’s director, Lisa Guay-Woodford, M.D., will reinforce close collaboration between research and clinical care to improve the care and treatment of children with polycystic kidney disease and other inherited renal disorders.
  • The Center for Neuroscience Research’s integration into the infrastructure of Children’s National Hospital has created a unique set of opportunities for scientists and clinicians to work together on pressing problems in children’s health.
  • Children’s National and the National Institute of Allergy and Infectious Diseases are tackling pediatric research across three main areas of mutual interest: primary immune deficiencies, food allergies and post-Lyme disease syndrome. Their shared goal is to conduct clinical and translational research that improves what we know about those conditions and how we care for children who have them.
  • An immunotherapy trial has allowed a little boy to be a kid again. In the two years since he received cellular immunotherapy, Matthew has shown no signs of a returning tumor — the longest span of time he’s been tumor-free since age 3.
  • In the past 6 years, the 104 device projects that came through the National Capital Consortium for Pediatric Device Innovation accelerator program raised $148,680,256 in follow-on funding.
  • Even though he’s watched more than 500 aspiring physicians pass through the Children’s National pediatric residency program, program director Dewesh Agrawal, M.D., still gets teary at every graduation.

Understanding and treating the novel coronavirus (COVID-19)

In a short period of time, Children’s National Research Institute has mobilized its scientists to address COVID-19, focusing on understanding the virus and advancing solutions to ameliorate the impact today and for future generations. Children’s National Research Institute Director Mark Batshaw, M.D., highlighted some of these efforts in the annual report:

  • Eric Vilain, M.D., Ph.D., director of the Center for Genetic Medicine Research, is looking at whether or not the microbiome of bacteria in the human nasal tract acts as a defensive shield against COVID-19.
  • Catherine Bollard, M.D., MBChB, director of the Center for Cancer and Immunology Research, and her team are seeing if they can “train” T cells to attack the invading coronavirus.
  • Sarah Mulkey, M.D., Ph.D., an investigator in the Center for Neuroscience Research and the Fetal Medicine Institute, is studying the effects of, and possible interventions for, coronavirus on the developing brain.

You can view the entire Children’s National Research Institute academic annual report online.

Colorectal Textbook cover

Pediatric Colorectal and Pelvic Reconstructive Surgery textbook now available

Colorectal Textbook cover

The cover of the new Pediatric Colorectal and Pelvic Reconstructive Surgery textbook, edited by Marc A. Levitt, M.D., and Alejandra Vilanova-Sánchez, M.D.

The first edition of the Pediatric Colorectal and Pelvic Reconstructive Surgery textbook, edited by Marc A. Levitt, M.D., and Alejandra Vilanova-Sánchez, M.D., is now available.

The textbook provides comprehensive coverage of the anatomical and physiological aspects of complex colorectal and pelvic malformations presented in a practical and clinically focused way. Some of the topics explored include surgical protocols, the benefits of high-level collaboration between surgical services when treating these anomalies, treatment algorithms and care of complications.

The book also includes content on:

  • Evaluation and management of the newborn
  • Surgical interventions of the newborn, and when a primary repair versus a staged approach is required
  • The value of laparoscopy and when to use it
  • The importance of a transition program to adulthood

The Pediatric Colorectal and Pelvic Reconstructive Surgery, 1st edition textbook can be purchased here, and will benefit colorectal teams worldwide.

About the Editors

Marc Levitt

Marc Levitt, M.D., leads the colorectal program at Children’s National Hospital and is editor of the new Pediatric Colorectal and Pelvic Reconstructive Surgery textbook.

Marc Levitt, M.D., currently leads the colorectal program at Children’s National Hospital, the first in the mid-Atlantic region to fully integrate surgery, urology, gynecology and gastroenterology into one cohesive program for children. He has been the 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 specializing 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. Dr. Levitt has written three textbooks, and has authored over 200 scientific articles on these subjects.

Dr. Levitt is the founder of the Colorectal Team Overseas (CTO), which is 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 creation of the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC), which is an organization of collaborating colorectal centers across the globe.

Alejandra Vilanova-Sánchez, M.D., is a pediatric surgeon in the urogenital and colorectal unit at the University Hospital La Paz, Madrid. After finishing her training, she completed a fellowship in Pelvic Reconstruction Surgery at the Center for Colorectal and Pelvic Reconstruction at Nationwide Children’s Hospital. Her focus was on complex colorectal and pelvic surgery involving the gynecological and urological systems. Dr. Vilanova-Sánchez is a member of the Spanish Association of Pediatric Surgeons, European Pediatric Surgical Association (EUPSA) and ARM-net. She is a frequent speaker in international meetings and she has organized several national and international meetings on the topic of pediatric colorectal care. She participates annually in surgical brigades collaborating with nonprofit organizations, Colorectal Team Overseas and Helping Hands for Anorectal Malformations International, where she helps patients with colorectal conditions around the world.

child writing question marks on chalkboard

Test your knowledge of pediatric colorectal and pelvic reconstructive surgery!


gluten free cupcakes

Celiac disease linked to psychosocial distress

gluten free cupcakes

A recent study found elevated rates of psychosocial distress among children with celiac disease compared to the general population.

Shayna Coburn, Ph.D., assistant professor and psychologist at Children’s National Hospital, is the lead author of a recent article on the first study to report mental health disorders (MHD) in North American children with celiac disease (CeD). The study found elevated rates of psychosocial distress among the children compared to the general population.

The study is based on electronic surveys of patients’ MHD history, psychological symptoms and experiences with the gluten-free diet (GFD) as well as follow-up visits to the Multidisciplinary Celiac Disease Clinic at Children’s National between spring 2017 and spring 2018. The survey participants included 73 parents of children ages 3 to 18 attending the clinic. The researchers calculated rates of MHD in the children and compared them to National Institute of Mental Health population-level data.

Thirty-four percent of the children had at least one MHD. Their rates of anxiety disorders (16%) and attention-deficit/hyperactivity disorder (ADHD, 16%,) were more common than general population rates. More than one-quarter of parents reported current psychosocial distress in their child (28-39%), and approximately half reported their own stress (51%) and worry about the financial burden (46%) associated with the GFD – the only treatment for the disease.

The findings are detailed in an article titled “Mental Health Disorders and Psychosocial Distress in Pediatric Celiac Disease,” which appears on the website of the Journal of Pediatric Gastroenterology and Nutrition. The article is scheduled to appear in the May 2020 print edition of the journal, which will be available April 24.

Coburn and her co-authors also compared the experiences of children diagnosed with CeD less than three months prior to the study with those diagnosed more than three months prior. They were surprised to find that patients’ rates of comorbid CeD and MHD didn’t differ depending on the time of diagnosis, says Coburn.

Parents of children with new CeD diagnoses were less confident in the GFD, but the timing of a CeD diagnosis did not affect the rates of MHD, stress and financial burden. Children with MHD had more anxiety, anger and overall distress as well as parents who were suffering with distress than those without MHD.

The researchers’ findings about the timing of diagnosis “seemed to indicate that perhaps there’s a chronic stress burden on families that doesn’t necessarily improve with time and might be exacerbated in children who have mental health disorders,” says Coburn, who directs psychosocial services for the hospital’s Celiac Disease Program.

Overall, the findings emphasize the importance of ongoing routine screening and treatment for psychosocial distress associated with CeD and the GFD.

The start of the study coincided with the establishment of the clinic, where Coburn and her colleagues were seeing patients with comorbid CeD and MHD. At the clinic, patients and their families are treated by a gastroenterologist as well as the clinic’s nutritionist, education team, psychologist, neurologist and neuropsychologist during an integrative multidisciplinary appointment.

Coburn notes that generally the psychosocial impact on patients with CeD has been overlooked or viewed as a minor condition. “Our work is showing that there are a lot of psychosocial vulnerabilities in children and adults with celiac disease.”

As she continues her research, Coburn sees a need “to advocate for incorporating psychological screening into routine medical treatment of patients with celiac disease. We’d like this to be part of best practices and want to develop behavioral treatments for patients so they’re succeeding with the gluten-free diet.”

“With ADHD there are problems with impulse control, which can make it extra hard to maintain a gluten-free diet,” says Coburn. The co-principal investigators want to study in-depth some of the families who participated in the earlier study to gauge how effectively they’re able to manage ADHD symptoms in order to maintain a gluten-free diet.

Coburn and Maegan Sady, a neuropsychologist at Children’s National, have received a $25,000 grant from the Lambert Family Foundation to study comorbid ADHD and CeD and how they affect a patient’s ability to adhere to the GFD.

celiac testimony on Capitol Hill

Talking on Capitol Hill about the need for increased celiac research funding

celiac testimony on Capitol Hill

Celiac Disease Program leaders joined policymakers, experts and families to make the case for additional celiac disease research funding on Capitol Hill in January 2020.

Federal funding for celiac disease has been virtually nonexistent, despite the fact that celiac is one of the most common genetic autoimmune disorders. The lack of funding directly translates into a shortage of research into better understanding celiac disease, its mechanisms and potential treatment alternatives to the strict diet that is the current standard of care.

In January, the leaders of the Celiac Disease Program at Children’s National Hospital, Dr. Benny Kerzner and Vanessa Weisbrod, gave oral testimony as part of a congressional briefing hosted by Congressman Dwight Evans (PA) on the need for significant research funding in this area. Also presenting were Jon and Leslie Bari, founders of Celiac Journey and Gluten Free Finds PA, who are parents of a child with celiac, as well as Dr. Arjunot Singh, attending physician in gastroenterology at Children’s Hospital of Philadelphia.

The briefing focused on how federal funding for celiac research could bring multi-center, large scale research projects to the study of the condition for the first time, with the goal of accomplishing the following:

  • Better understanding the immunological basis of the disease
  • Identifying celiac disease’s triggers and how to prevent them
  • Exploring potential treatments and/or cures, including those that might inhibit onset of the disease or induce tolerance of the gluten protein

In their testimony, Kerzner and Weisbrod noted that the only current treatment for celiac disease is a strict, lifelong gluten-free diet, and that there is no medication or cure for the condition. Parents and children alike struggle with managing the diet and coping with the persistent fear of increased mortality from other conditions that commonly co-occur with celiac disease, including non-Hodgkins lymphoma, liver disease, small bowel cancers and other autoimmune conditions.

Weisbrod also spoke about an existing collaborative research and care infrastructure called the Celiac Kids Network – an informal consortium of 12 pediatric hospitals with celiac programs that research together, develop tools to measure gluten exposure risks, share best practices and collaborate on difficult cases. She made the case that should federal funding significantly increase, infrastructure is already in place to manage and oversee the types of research collaborations that could really make a difference for children.

“We dream of establishing a learning health system with a coordinated patient registry that is representative of all patients with celiac disease no matter where in the country they live,” Weisbrod concluded in her testimony. “A national biorepository of patient blood and tissue samples would enable researchers from every medical discipline to join us in understanding how celiac disease affects kids. We could evaluate the biological and psychological outcomes of patients to look for interventions to improve quality of life. The sky is the limit. But to do this, we need big funding to collect big data, to make big differences.”

Marc Levitt

Premier pediatric colorectal program opens doors at Children’s National

Marc Levitt

“With the broad range of expertise at Children’s National, including the nation’s best NICU, I’m confident that colorectal patients will get better, integrated care faster and more effectively here than anywhere else in the world,” says Marc Levitt, M.D.

World-renowned surgeon opens first program for care and treatment of colorectal conditions in the mid-Atlantic.

A new, highly-specialized surgical program at Children’s National Hospital is expected to draw patients from around the world. The colorectal surgery program is the first in the mid-Atlantic region to fully integrate surgery, urology, gynecology and gastroenterology into one cohesive program for children. The program is led by Marc Levitt, M.D., an internationally recognized expert in the surgical care and treatment of pediatric colorectal disorders who has performed over 10,000 surgeries to address a wide spectrum of problems involving the colon and rectum – more than any other full time practicing pediatric surgeon in the world.

“In the 25 years that I’ve been passionate about helping children with colorectal and pelvic conditions, I’ve learned that collaborative and integrated programs are the best way to care for them,” says Dr. Levitt. “With the broad range of expertise at Children’s National, including the nation’s best NICU, I’m confident that colorectal patients will get better, integrated care faster and more effectively here than anywhere else in the world.”

The program provides diagnosis and treatment for every type of colorectal disorder occurring in infants, children and adolescents, from the most common to the most complex. Every necessary specialty is integrated into the program in one convenient location to provide seamless care for all colon and rectum conditions, with particular expertise in:

  • Anorectal malformations
  • Cloacal malformations
  • Chronic constipation and fecal incontinence
  • Fecal and urinary incontinence related to spinal conditions such as spina bifida
  • Hirschsprung disease
  • Motility disorders

“Every child receives a customized treatment plan to address his or her unique needs,” Dr. Levitt says about the program. “Additionally, our surgeons often combine complex procedures across specialties to reduce the number of surgeries a child requires. It isn’t unusual for us to include urology, gynecology, and gastroenterology teams in the operating room alongside the colorectal surgeons so multiple issues can be addressed in a single procedure – we know that when possible, fewer surgeries is always better for the child.”

Dr. Levitt has cared for children from 50 states and 76 countries. He is the founder of Colorectal Team Overseas (CTO), a group of international providers who travel to the developing world to provide care for patients and teaching of their physicians and nurses. He co-founded the Pediatric Colorectal and Pelvic Learning Consortium (PCPLC), an organization of collaborating colorectal centers across the globe.

“We’re absolutely thrilled to welcome Marc Levitt and launch the comprehensive colorectal program under his expert leadership,” adds Anthony Sandler, M.D., surgeon-in-chief and vice president of the Joseph E. Robert, Jr., Center for Surgical Care at Children’s National. “There are few in the world who can provide the expertise and leadership in colorectal diagnoses and treatment that Marc brings with him to Children’s. Many children and families from the region and from around the world will benefit from his expertise and from the program in general.”

young child playing with play-doh

Play-Doh, dry pasta show little gluten transfer

young child playing with play-doh

A preliminary study found no significant gluten transfer on hands or surfaces after children used Play-Doh and dry, uncooked pasta for classroom and sensory play.

Parents who worry their child with celiac disease may be exposed to gluten at school might be able to strike two common school substances – Play-Doh and dry, uncooked pasta – from the exposure risk list, as long as children don’t consume them. A preliminary study from Children’s National Hospital published in the Journal of Pediatric Gastroenterology and Nutrition found no significant gluten transfer on hands or surfaces after children used these items for classroom and sensory play.

Other common school supplies and activities such as paper mâché and baking projects with flour-based dough were associated with gluten transfer. However, gluten residue was not detected when hands and play surfaces were cleaned through basic hygiene including hand-washing and routine surface cleaning.

“We’ve coached families for many years to avoid kids touching any gluten containing school supply, which can be challenging, especially for young children, including my own,” says Vanessa Weisbrod, executive director of the Celiac Disease Program at Children’s National Hospital, who conceived and led the study. “These findings make an easy distinction – school supplies that are dry and not sticky show very low gluten transfer, while those that were wet and pasty cling heavily to hands and table surfaces. In all cases, good hand hygiene and cleaning surfaces after using gluten-containing materials can prevent most gluten transfer.

The authors tested five scenarios commonly taking place in schools where it was thought gluten transfer could be high enough to pose a risk for someone with celiac disease. Gluten transfer was quantified by measuring the amount of gluten in an entire slice of gluten-free bread handled by the child or wiped on the play surfaces, both before and after cleaning. In general, products containing greater than 20 parts per million (ppm) or .002% gluten are considered unsafe for patients with celiac disease.*

The study found negligible gluten transfer in two scenarios:

  • Play-Doh: After five minutes of play, none of the samples rubbed on the hands of children had gluten transfers above the 20ppm threshold. Only two slices of bread tested above the 20 ppm threshold when rubbed on table surfaces. Both of these slices had visible pea-sized pieces of Play-Doh adhered to them.
  • Dry pasta in a sensory table: All samples (hands and surfaces) contained less than 20 ppm gluten, and 9 out of 10 samples were under 5 ppm after five minutes of play.

School scenarios where significant gluten transfer was detected included:

  • Home economics baking project: Both hands and workspaces used to roll out flour-containing cookie dough transferred potentially clinically significant  amounts of gluten to bread – well above the assay’s upper limit quantification of 84 ppm.
  • Paper mâché balloon art: Even after hands and surfaces dried, gluten transfer after this activity was high, mostly above 84 ppm.
  • Cooked, dyed pasta in a sensory table: After five minutes of play with cooked pasta gluten transfer resulted in concentrations of more than 20ppm gluten, with most samples exceeding 84 ppm.

“These methods provide a realistic estimate of the risk to children with celiac disease using gluten-containing school supplies,” notes Jocelyn Silvester, M.D., Ph.D., director of Research for the Celiac Disease Program at Boston Children’s Hospital and a co-author on the study. “Now we can give evidence-based recommendations to families and schools, so that they can focus on what is most important to keep children with celiac disease safe.”

“Educators are very aware of our additional responsibility to keep students safe during every learning experience at school,” says Amy Damast, Ph.D., Director of Early Childhood Education and Family Engagement at the Temple Sinai Early Childhood Education Program and study co-author. “These study findings should reassure us all that routine, careful handwashing and surface-cleaning methods will keep children with celiac disease safe and healthy, while allowing them to participate in more activities that may involve gluten-containing materials. This study is a win for the students and their schools.”

Clean hands and surfaces matter most

Following the Play-Doh and home economics baking project, the team also tested the effectiveness of three cleaning methods at removing gluten particles. All three – hand-washing with just water, hand-washing with soap and water or thorough wiping with an antibacterial hand wipe – demonstrated the ability to effectively remove gluten.

“Whether you’re protecting from bacteria or gluten, hand-washing and surface hygiene are key,” says Weisbrod. “As parents we want to do everything we can to keep our kids safe and healthy, and this study definitely shows that the number one thing we can do is teach our kids to wash their hands!”

“The presence of gluten in schools poses a potentially serious health concern for students with celiac disease, both in long-term health complications and in debilitating acute symptoms at the time of exposure, seriously inhibiting a student’s ability to succeed at school,” says Marilyn G. Geller, chief executive officer of the Celiac Disease Foundation, which funded the study. “The Celiac Disease Foundation is proud to partner with Children’s National Hospital and sponsor research that defines the risk of gluten contamination in everyday school supplies.”

*U.S. Food and Drug Administration regulations allow foods with less than 20 parts per million of gluten to be labeled “gluten-free.” It is not possible to detect zero ppm – the lowest detected level is 3 ppm (.0003%).

Dr. Kurt Newman in front of the capitol building

Making healthcare innovation for children a priority

Dr. Kurt Newman in front of the capitol building

Recently, Kurt Newman, M.D., president and CEO of Children’s National Hospital, authored an opinion piece for the popular political website, The Hill. In the article, he called upon stakeholders from across the landscape to address the significant innovation gap in children’s healthcare versus adults.

As Chair of the Board of Trustees of the Children’s Hospital Association,  Dr. Newman knows the importance of raising awareness among policy makers at the federal and state level about the healthcare needs of children. Dr. Newman believes that children’s health should be a national priority that is addressed comprehensively. With years of experience as a pediatric surgeon, he is concerned by the major inequities in the advancements of children’s medical devices and technologies versus those for adults. That’s why Children’s National is working to create collaborations, influence policies and facilitate changes that will accelerate the pace of pediatric healthcare innovation for the benefit of children everywhere. One way that the hospital is tackling this challenge is by developing the Children’s National Research & Innovation Campus, which will be the nation’s first innovation campus focused on pediatric research.

Research & Innovation Campus

Children’s National welcomes Virginia Tech to its new campus

Children’s National Hospital and Virginia Tech create formal partnership that includes the launch of a Virginia Tech biomedical research facility within the new Children’s National Research & Innovation Campus.

Children’s National Hospital and Virginia Tech recently announced a formal partnership that will include the launch of a 12,000-square-foot Virginia Tech biomedical research facility within the new Children’s National Research & Innovation Campus. The campus is an expansion of Children’s National that is located on a nearly 12-acre portion of the former Walter Reed Army Medical Center in Washington, D.C. and is set to open its first phase in December 2020. This new collaboration brings together Virginia Tech, a top tier academic research institution, with Children’s National, a U.S. News and World Report top 10 children’s hospital, on what will be the nation’s first innovation campus focused on pediatric research.

Research & Innovation Campus

“Virginia Tech is an ideal partner to help us deliver on what we promised for the Children’s National Research & Innovation Campus – an ecosystem that enables us to accelerate the translation of potential breakthrough discoveries into new treatments and technologies,” says Kurt Newman, M.D., president and CEO, Children’s National. “Our clinical expertise combined with Virginia Tech’s leadership in engineering and technology, and its growing emphasis on biomedical research, will be a significant advance in developing much needed treatment and cures to save children’s lives.”

Earlier this year, Children’s National announced a collaboration with Johnson & Johnson Innovation LLC to launch JLABS @ Washington, DC at the Research & Innovation Campus. The JLABS @ Washington, DC site will be open to pharmaceutical, medical device, consumer and health technology companies that are aiming to advance the development of new drugs, medical devices, precision diagnostics and health technologies, including applications in pediatrics.

“We are proud to welcome Virginia Tech to our historic Walter Reed campus – a campus that is shaping up to host some of the top minds, talent and innovation incubators in the world,” says Washington, D.C. Mayor Muriel Bowser. “The new Children’s National Research & Innovation Campus will exemplify why D.C. is the capital of inclusive innovation – because we are a city committed to building the public and private partnerships necessary to drive discoveries, create jobs, promote economic growth and keep D.C. at the forefront of innovation and change.”

Faculty from the Children’s National Research Institute and the Fralin Biomedical Research Institute at Virginia Tech Carilion (VTC) have worked together for more than a decade, already resulting in shared research grants, collaborative publications and shared intellectual property. Together, the two institutions will now expand their collaborations to develop new drugs, medical devices, software applications and other novel treatments for cancer, rare diseases and other disorders.

“Joining with Children’s National in the nation’s capital positions Virginia Tech to improve the health and well-being of infants and children around the world,” says Virginia Tech President Tim Sands, Ph.D. “This partnership resonates with our land-grant mission to solve big problems and create new opportunities in Virginia and D.C. through education, technology and research.”

The partnership with Children’s National adds to Virginia Tech’s growing footprint in the Washington D.C. region, which includes plans for a new graduate campus in Alexandria, Va. with a human-centered approach to technological innovation. Sands said the proximity of the two locations – just across the Potomac – will enable researchers to leverage resources, and will also create opportunities with the Virginia Tech campus in Blacksburg, Va. and the Virginia Tech Carilion Health Science and Technology campus in Roanoke, Va.

Carilion Clinic and Children’s National have an existing collaboration for provision of certain specialized pediatric clinical services. The more formalized partnership between Virginia Tech and Children’s National will drive the already strong Virginia Tech-Carilion Clinic partnership, particularly for children’s health initiatives and facilitate collaborations between all three institutions in the pediatric research and clinical service domains.

Children’s National and Virginia Tech will engage in joint faculty recruiting, joint intellectual property, joint training of students and fellows, and collaborative research projects and programs according to Michael Friedlander, Ph.D., Virginia Tech’s vice president for health sciences and technology, and executive director of the Fralin Biomedical Research Institute at VTC.

“The expansion and formalization of our partnership with Children’s National is extremely timely and vital for pediatric research innovation and for translating these innovations into practice to prevent, treat and ultimately cure nervous system cancer in children,” says Friedlander, who has collaborated with Children’s National leaders and researchers for more than 20 years. “Both Virginia Tech and Children’s National have similar values and cultures with a firm commitment to discovery and innovation in the service of society.”

“Brain and other nervous system cancers are among the most common cancers in children (alongside leukemia),” says Friedlander. “With our strength in neurobiology including adult brain cancer research in both humans and companion animals at Virginia Tech and the strength of Children’s National research in pediatric cancer, developmental neuroscience and intellectual disabilities, this is a perfect match.”

The design of the Children’s National Research & Innovation Campus not only makes it conducive for the hospital to strengthen its prestigious partnerships with Virginia Tech and Johnson & Johnson, it also fosters synergies with federal agencies like the Biomedical Advanced Research and Development Authority, which will collaborate with JLABS @ Washington, DC to establish a specialized innovation zone to develop responses to health security threats. As more partners sign on, this convergence of key public and private institutions will accelerate discoveries and bring them to market faster for the benefit of children and adults.

“The Children’s National Research & Innovation Campus pairs an inspirational mission to find new treatments for childhood illness and disease with the ideal environment for early stage companies. I am confident the campus will be a magnet for big ideas and will be an economic boost for Washington DC and the region,” says Jeff Zients, who was appointed chair of the Children’s National Board of Directors effective October 1, 2019. As a CEO and the former director of President Obama’s National Economic Council, Zients says that “When you bring together business, academia, health care and government in the right setting, you create a hotbed for innovation.”

Ranked 7th in National Institutes of Health research funding among pediatric hospitals, Children’s National continues to foster collaborations as it prepares to open its first 158,000-square-foot phase of its Research & Innovation Campus. These key partnerships will enable the hospital to fulfill its mission of keeping children top of mind for healthcare innovation and research while also contributing to Washington D.C.’s thriving innovation economy.