Tag Archive for: anorectal malformation

Rectoperineal fistula in a female

Patient-reported outcomes for children with anorectal malformation

Rectoperineal fistula in a female

Before this study, little has been documented about how anorectal malformation type, sacral ratio, age and bowel regimen affect continence and quality of life.

A large, multi-institutional study including patient-reported outcomes for children who have anorectal malformations found that the type of malformation and whether a child is clean/continent and not soiling can have a significant impact on the assessment of a patient’s quality-of-life. The study also highlights that patients and their families seem to benefit from access to a specialized center offering multi-disciplinary care in a single location.

What it means

The study is one of the first to collect input from patients and their families at two multi-disciplinary centers for colorectal care. The authors, including Marc Levitt, MD, chief of Colorectal and Pelvic Reconstruction at Children’s National Hospital, who collaborated with colleagues at Nationwide Children’s Hospital in Columbus and Royal Children’s Hospital in Melbourne Australia, sought to understand the impact of the anorectal malformation type and the development of the sacrum bone on continence outcomes in children. Additionally, the team aimed to compare continence outcomes by age group and determine the quality of life with different bowel regimens, including medications like laxatives or the use of enemas.

The researchers found that continence in patients taking laxatives to manage their bowels varied depending on the type of malformation, but that sacral ratio or a measure of the growth of a key pelvic bone correlating with pelvic floor development, did not seem to play a role in continence.

Additionally, patients (and patient families) had similar perceptions of their overall quality of life, as long as the child was clean/continent. Quality-of-life scores were lower, however,  if a child was managed using enemas but continued to experience soiling/incontinence. This vital component was a measure of patient reported outcomes, or how the patient perceives their care is going.

Why it matters

Before this study, little has been documented about how anorectal malformation type, sacral ratio, age and bowel regimen affect continence and quality of life. For the first time, these reports are coming from the patient and family point of view. In their conclusion, the authors note that the study’s findings provide important discussion points for counseling patients on long term management strategies for children with anorectal malformations. The findings also identify new areas for research driven by what patients and their families report are most important.

Read the full study, Patient-reported outcomes of Children with an Anorectal Malformation in the Annals of Surgery.

pediatric colorectal surgeons at Children’s National Hospital

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

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

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

What it means

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

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

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

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

Why it matters

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

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

Children’s National leads the way

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

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

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

Read the studies in the Journal of Pediatric Surgery:

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.

Briony Varda

Q&A with urologist Briony Varda

Briony Varda

Briony Varda, M.D., M.P.H., is fellowship trained in pediatric genitourinary reconstructive surgery and her subspecialty interests include the care of patients with spina bifida and the neurogenic bladder, cloacal anomalies, hydronephrosis, vesicoureteral reflux and posterior urethral valves, among others.

Children’s National Hospital recognizes many urologic disorders and illnesses that are unique to children. As such, we pride ourselves in working with top urology experts, including Briony Varda, M.D., M.P.H., pediatric urologist, who recently joined the Urology Division at Children’s National.

Dr. Varda is fellowship trained in pediatric genitourinary reconstructive surgery and her subspecialty interests include the care of patients with spina bifida and the neurogenic bladder, cloacal anomalies, hydronephrosis, vesicoureteral reflux and posterior urethral valves, among others.

Here, Dr. Varda tells us more about her work and what it means for the future of pediatric urology patients at Children’s National.

Q: Why did you decide to work in this field?

I have always thoroughly enjoyed working with children. They keep you on your toes, tell it straight, make you laugh and demonstrate unique resilience. At the same time, surgery allows me to work with my hands, while being creative and helping others. Finally, I had great mentors within pediatric urology who strongly influenced me in a positive way.

In sum, the kids, the surgery and the people led me here.

Q: What is the importance of urology care?

We have three goals in pediatric urology: protect the kidneys and bladder, prevent infection and help our patients stay dry.

Although it’s usually clear when kids have urinary tract infections or trouble with urinary accidents, it’s not always visible when there is a problem with the kidney or bladder. Urologic care is therefore important because it prevents long-term damage that might otherwise go unnoticed until it is too late. This is particularly true for patients with abnormal functioning of the bladder related to a neurologic cause, such as spina bifida or a tethered spinal cord.

Q: How has the program expanded and what are some of the most valuable changes you hope to see in the next couple of years?

Our Spina Bifida Program currently includes physicians from physical medicine and rehabilitation (PMNR), orthopedics, neurosurgery and urology. Our newest additions include a full-time nurse practitioner who facilitates care coordination and has a clinical expertise in bowel management, two new urologists (myself and Christina Ho, M.D.), and Mi Ran Shin, M.D., who is our new PMNR physician.

We are also collaborating closely with the new Pediatric Colorectal & Pelvic Reconstruction Division for patients who need advanced bowel management. These additions will go a long way to helping improve the day-to-day living of our patients and help improve their long-term medical outcomes.

In the coming year, we are anticipating welcoming another full-time nurse to our program, offering more patient-facing resources including a webpage focused on urodynamics and an array of new patient education materials. We are also hoping to establish a regional transitional care network for our adolescent and young-adult patients.

Q: The Colorectal Program at Children’s National includes three urologists. How does this collaboration allow for the care of more complex cases at this hospital?

We are fortunate to be part of the Colorectal Program here at Children’s National Hospital. We provide subspecialty expertise for patients born with anorectal malformations, including cloacal anomalies and cloacal exstrophy. Although historically considered a general surgery problem, patients with anorectal malformations have a high rate of concomitant conditions affecting their genitourinary anatomy and function. By coordinating clinical care and surgery within a multidisciplinary team, we provide comprehensive care for even the most complex patients – nothing goes unnoticed and each subspecialist provides a unique perspective on management as it relates to their field.  Along with ourselves and the colorectal surgeons, we regularly collaborate with gynecology, gastroenterology, interventional radiology and anesthesia.

Q:  What is some of the research you’re working on now that you’re looking forward to the most?

We are currently designing a set of research projects aimed at investigating low-value healthcare utilization (for example, emergency room use and inappropriate testing) among patients with spina bifida. I plan to investigate institutional patterns and then expand out to the Washington, D.C., Maryland, Virginia area and the national setting. By identifying patterns in low-value healthcare utilization and their associated factors, we can ideally improve care delivery for this special healthcare needs population.

We are also working on institutional protocols to enact recently published guidelines by the Spina Bifida Association and the CDC so that we can eventually contribute our own data to national registries. This will pave the way for increasingly rigorous spina bifida research in the future.

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.

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.

child writing question marks on chalkboard

Test your knowledge of pediatric colorectal and pelvic reconstructive surgery!


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.”