How we’re redefining the standard for children with spina bifida

The esteemed urology program at Riley Children’s Health underscores numerous novel standards to support patients with spina bifida. Led by division chief and pediatric urologist at Riley Children’s Rosalia Misseri, MD, the program—recognized as a clinical care partner by the Spina Bifida Association—is pioneering several techniques around reconstruction surgery and quality of life to help children with spina bifida live more fully.

Notably, our expert urology surgeons, known internationally for treating children with spina bifida, have developed a novel standard for complex surgical reconstruction for urinary incontinence (UI). The surgical approach includes spiral Monti channels and continent cutaneous vesicostomy to support channel creation when an appendicovesicostomy or traditional Monti-Yang tube procedure is not possible.

“We’ve seen remarkable advances in the care of patients with spina bifida,” Richard Rink, MD said, pediatric urologist at Riley Children’s. “Kidney failure used to be the leading cause of death in spina bifida patients, which almost never happens today. We have been a leader in this dramatic change because of our medical and innovative surgical solutions.”

One person who has particularly honed their expertise in urological surgery is Mark Cain, MD, surgeon-in-chief and pediatric urologist at Riley Children’s. He has been at the forefront in not only delivering exceptional surgical skills, but also enhancing the strategy to improve this surgical experience for children with spina bifida and other conditions.

“It’s about the whole space–how people move through registration; turning rooms over in a safe, clean environment; keeping the day moving for patients. It’s not just about the surgery, it’s about getting the system to work efficiently,” Dr. Cain said.

Beyond delivering lower urinary reconstruction surgery for children with spina bifida, the urology program has also expanded its approach to improve the overall quality of a child’s life. Developing QUALAS, an international, spina bifida-specific questionnaire, the initiative allows the urology team to understand the changing effects of fecal and urinary continence on health-related quality of life among different age groups. The questionnaire, administered to patients pre- and post-surgery or before or after starting a medication, also provides valuable insights on how to proceed with medical decision making, offering details on the treatments and surgical procedures that impact a patient’s quality of life.

“A patient’s expectations, their goals and what they want for their future are important considerations in recommending treatment that is truly patient centered,” Dr. Misseri added. “Whether it’s independence, finding a partner or some other personal measure of quality of life, knowing a patient’s wishes enables us to meaningfully care for the whole person and not merely treat a condition.”

Presently, the QUALAS survey is used by the National Spina Bifida registry sites, and there are ongoing efforts to translate the questionnaire in multiple languages to benefit patients with spina bifida worldwide.

As a result of these methods, the life expectancy for children with spina bifida has nearly doubled over the past 20 years, now averaging a 40-year lifespan. Furthermore, this success has catalyzed advancements for transitional urology, with the Transitional Adolescent and Young Adult Urology Program at Riley Children’s offering lifelong care for children into adulthood, further promising an enhanced quality of life for the entirety of the child’s condition.

As a whole, the collaborative efforts of Dr. Misseri, Dr. Rink, Dr. Cain and the entire pediatric urology team have positively impacted the field of pediatric urology, developing new approaches for reconstructive surgery and quality of life care for children.

“We have the premier reconstruction program and quality of life protocols in the world, without question,” Dr. Rink said.

More about pediatric urology at Riley Children’s

Specialists within the pediatric urology department at Riley Children’s are renowned in treating children with complex urologic conditions. Key program distinctions include:

• One of 10 bladder exstrophy centers of excellence in the nation (designated by the Association for the Bladder Exstrophy Community)
• One of the few Midwest facilities to offer pediatric robotic surgery
• Founding member of the Pediatric Urology Midwest Alliance, a group of leading pediatric urology programs advancing surgical outcomes and care for bladder exstrophy patients

Learn more about pediatric urology at Riley Children’s.