Duke Children’s now offers a specialized clinic treating children with congenital genitourinary (GU) and anorectal malformations (ARMs). The clinic combines multiple specialists to deliver world-class medical and surgical care to children and their families. This builds on Duke Children’s nationally-ranked care in nine pediatric specialties, including gastroenterology, GI surgery, and urology. 

“These conditions can be complex. Many children with anorectal and GU malformations also have other conditions, such as cardiac, bladder, and spine abnormalities — it takes a multidisciplinary team looking at each patient individually with a comprehensive view to deliver the best care,” says Alexandra Borden, PA-C, physician assistant in the Division of Pediatric Urology who spearheaded the clinic.

The program’s key component is its multidisciplinary structure. “We have pediatric specialists representing surgery, urology, gastroenterology, and gynecology collaborating,” says Tara Streich-Tilles, MD, MPH, pediatric and adolescent gynecologist. “Each specialty involved is paramount to the overall success of the program and the care of the patient population.”

The team has unique expertise in treating:

• Anorectal abnormalities found in both males and females, such as imperforate anus, anal atresia and stenosis, and rectoperineal fistulas
• Anorectal abnormalities specific to females, such as rectovestibular fistula and cloaca
• Anorectal abnormalities specific to males, such as rectobulbar urethral fistula, rectoprostatic urethral fistula, and rectobladder neck fistula
• Bowel abnormalities
• Bladder, kidney, and ureter abnormalities

Congenital differences of reproductive structures in both males and females
“Many kids with these malformations have multiple conditions to consider and address,” says Borden. Thirty percent of females with anorectal malformations have a Mullerian [uterine or vaginal] anomaly, too. “Each child is unique — we look at each case and build a team to meet their current needs with strong considerations for what will deliver the best outcomes now and later in life to reduce morbidity and mortality.”

One of the major benefits of receiving care at Duke is the extension of subspecialty care. “If a child has a comorbid cardiac, gastrointestinal, neurological, or spinal abnormality, for example, we have nearly every pediatric expert at our fingertips to bring into the care team,” says Borden.

GU anomalies and ARMs can be diagnosed prenatal but many are diagnosed at birth. In some cases, GU malformations are not identified until a child enters puberty. “Early diagnosis and intervention are crucial — it’s important to know what to look for and get kids appropriate screenings so they have optimal care from the start,” says Borden. “Another benefit of an early diagnosis is educating patients and families about their bodies and what to expect as they grow,” Streich-Tilles explains. 

Surgery is often part of the treatment plan to correct malformations, but this typically makes up only 10% to 15% of the required care. While some children need multiple surgeries over the years, Streich-Tilles says the team aims to minimize the number of surgeries and maximize the most effective and appropriate treatment options. “This approach requires consistent and regular follow-up care from several specialties, and we review and treat complex cases together as a unified team.”

This cohesive approach is helpful for families who can see multiple specialists in one clinic location. The clinic aims to schedule imaging and all appointments in one day to minimize travel, life disruption, and strain on families. “We emphasize communication with patients and families and align our care with their lives and goals. Children are dynamic; we’re considering how treatment may affect their school, activities, and development to inform the timing of procedures,” says Streich-Tilles.

The team currently sees children from birth to 18 years. However, there’s a focus on being a lifespan institution. “We can initiate care when patients are young and continue that support as they transition to adulthood,” says Streich-Tilles. Borden adds, “As kids get older, it’s important for their pediatric care team to collaborate with their new adult care team because we deeply understand their condition, previous treatments and surgeries, and how these anomalies may impact their lifelong health.” 

“There’s immense gratification in helping a child or teen through treatment and seeing the benefits to their physical health and quality of life,” says Borden. “Our interventions live on with kids for years into adulthood to help them live a productive, happy, and healthy life.”

Streich-Tilles adds, “Our vision for the future is growing access to a broader range of patients and from a wider geographic area.”