Vanderbilt’s first adult spina bifida clinic is opening in October 2025, offering comprehensive, cutting-edge urologic care to patients with congenital urologic conditions.
The clinic will offer urodynamics to evaluate patients with neurogenic bladders — a condition in which the nerves controlling urination are damaged — and will have the ability to do small procedures like cystoscopy and Botox, which is injected into the bladder wall to reduce muscle spasms and improve urinary control.
Spina bifida is a congenital defect in which the spinal cord is exposed, typically open on the patient’s back. Patients with spina bifida typically have poor cerebral spinal fluid drainage and often require a shunt to redirect the fluid. Patients also often have issues with bladder, bowel and lower extremity function, even after their spinal defect is repaired.
“Our clinic is going to be primarily young adults who are transitioning from the pediatric hospital to the adult hospital, but we will also see adults who don’t have an established adult specialist/urologist,” said Brendan Frainey, MD, director of Transitional Urology at Vanderbilt University Medical Center.
“There is definitely increasing interest in these types of clinics, but there are only a handful of well-established transitional urology clinics in the country,” he said.
There are an estimated 166,000 patients with spina bifida in the U.S., and over 50% of them are becoming adults. Spina bifida occurs among 1 in every 2,875 births in the U.S. each year, according to the Centers for Disease Control and Prevention.
There are only 25 clinics in the nation solely dedicated to the care of adult patients with spina bifida. The nearest to Nashville is at The University of Alabama at Birmingham.
“Previously a lot of these children didn’t survive into adulthood, but because of medical advances such as creation of the VP shunt and clean intermittent catheterization, the majority of patients with spina bifida are living into adulthood,” Frainey said. “We have this group of patients who previously didn’t need this care who now do and, unfortunately, there aren’t many general practice urologists who feel comfortable taking care of these complex patients.
“As they get older, most of their neurosurgical needs are more stable, but most patients still have ongoing urologic needs. That is why our specialty is often the one leading the way through this transition work. Young adults with spina bifida often have recurrent urinary tract infections or can have issues with urinary/fecal incontinence. These can lead them to the ER and potentially to have prolonged hospital stays for things that are preventable if we can see them routinely in the outpatient setting and continue care into adulthood.”
The new Vanderbilt Spina Bifida Clinic for adults, located on the third floor of The Vanderbilt Clinic, will be staffed with a nurse to help run the urodynamics, reconstructive specific nurses who are familiar with this patient population, a medical assistant and Frainey.
Most patients will be referrals from primary care physicians or referrals from the pediatric hospital if they are transitioning from the pediatric side to the adult side. The Urology call center at 615-322-2880 can refer patients who have a diagnosis of spina bifida, bladder exstrophy or posterior urethral valves, which are congenital conditions that need lifelong care.
“Given our long history of being a center of excellence in spina bifida care at Monroe Carell Jr. Children’s Hospital at Vanderbilt, it makes perfect sense that we now open a similar center of excellence for adults to provide the highest quality urologic care as these individuals come of age,” said David Penson, MD, MPH, MMHC, the Paul V. Hamilton M.D. and Virginia E. Howd Professor of Urologic Oncology and chair of the Department of Urology.
“Dr. Frainey is a rising star in pediatric urology with experience in adult urology as well and is the perfect person to lead this effort at VUMC,” he said.
