As Katy and William Vincent pored over information on spina bifida to understand what to expect and how to care for an 18-month-old girl they were fostering and preparing to adopt, the information was overwhelming.
In spina bifida, the layers of tissue and bone that normally cover and protect the spinal cord fail to close during development, leaving delicate nerves exposed. It’s often called a “snowflake condition” because cases and severity differ from person to person with symptoms like incontinence, fluid on the brain, developmental delays, bone abnormalities and more. About one in every 2,500 babies are born with spina bifida in the United States each year.
“We didn’t know anything about spina bifida. As we were preparing to adopt her, I went online and looked up everything I could,” said Katy. “It was a lot of information at first, and very scary.”
Living in East Tennessee, four hours away from Nashville, there was one thing that the Vincents were sure of for their now-daughter, Elizabeth “Elly” Vincent: they wanted to continue where Elly’s care began as an infant — at Monroe Carell Jr. Children’s Hospital at Vanderbilt, which is home to one of the top spina bifida clinics/programs in the country.
“The care is superior to other places that we have been. I feel like I am listened to and cared for. The doctors are knowledgeable, and they have an investment in my daughter,” said Katy, whose daughter is now 7. Elly has a comprehensive Spina Bifida Clinic team visit once a year, with many more specialist visits in between.
The Spina Bifida Clinic was recently recognized for the excellence in care it provides to patients like Elly and has been named a Clinic Care Partner by the Spina Bifida Association. To achieve the SBA’s designation, the clinic went through an intense application process and had to meet all 10 standards as set by the organization’s professional advisory committee.
“Vanderbilt has a long, rich history of providing expert care for patients with spina bifida,” said Douglass Clayton, MD, medical director of the Spina Bifida Clinic and a pediatric urologic surgeon at Monroe Carell. “Thanks to the pioneering work by Drs. Noel Tulipan and Joe Bruner, we have long been a center of excellence closing myelomeningocele (a form of spina bifida) prenatally — it started here, and we’ve been involved since the inception.”
“We are thrilled to be recognized as a Clinic Care Partner by the Spina Bifida Association. We approach care for these children and young adults as a team, working to optimize their health and well-being by working together and continue to advance that care through research.”
The Spina Bifida Clinic team brings together and coordinates care for children among multiple surgical and medical specialties, including neurosurgery, urology, maternal-fetal care, physical rehabilitation, gastroenterology, orthopaedics, psychology, physical therapy, occupational therapy, social work and nutrition, as well as other wraparound services to care for the whole family.
“The Spina Bifida Program at Monroe Carell strives to evolve and improve the medical care delivered to our patients. The designation of Clinical Care Partner by the Spina Bifida Association only highlights the amazing work and innovation our team, both past and present, has invested in the program,” said Rose Tinch Calvert, patient care coordinator for the clinic. “Patients with Spina Bifida require lifelong medical care, and our team is grateful to the families that choose Monroe Carell’s Spina Bifida Program to be part of that medical care until they transition into adulthood. Our goal is to develop relationships that will foster trust and partnership with patients and families. As patient care coordinator, it is an honor to be a part of developing that relationship.”
Monroe Carell provides the highest level of care for patients with spina bifida. In 1997, surgeons at Vanderbilt pioneered in utero surgery to repair myelomeningocele.
A landmark study published in 2010, of cases performed at three sites including Vanderbilt, showed that performing spina bifida repair surgery while the baby was still in the womb had significant benefits compared to surgical repair after birth. Additional research published in 2020 revealed that those benefits of fetal surgery continued through school-age children. Monroe Carell has continued to advance research that further enhances the care these children receive.
“It has been important that we, as an original in-utero trial center, continue to teach the procedure and help with the interpretation of the data from the original trial,” said Jay Wellons, MD, MSPH, holder of the Cal Turner professor of Pediatric Neurosurgery and chief of the division (and lead neurosurgeon for in-utero surgery). “We have also had the opportunity to evolve the procedure in ways that reduce the degree of preterm birth and also show that intrauterine surgery can be done even if there are more complex defects noted on ultrasound.”
The clinic participates in two different studies funded by the National Institutes of Health that specifically investigate aspects of spina bifida care. The National Spina Bifida Patient Registry and the UMPIRE study, respectively, help to provide improved understanding of long-term spina bifida outcomes that will benefit patients, caregivers and clinicians.
For the Vincents, having a hospital and well-rounded clinic with a caring team that understands their daughter’s needs is important. Elly, who uses a wheelchair, is seen at Monroe Carell for epilepsy, club foot, scoliosis, developmental delays, incontinence and hydrocephalus (fluid on the brain), among other issues. She has had at least six surgeries since birth.
Elly, a once reserved, quiet toddler, has a lot of spunk and can be super goofy, Katy said. She enjoys arts and crafts and loves music and dance classes.
“She’s been through a lot. She was so quiet, and now she has grown so much. Everyone knows when she is around,” Katy said.
“I feel very comforted by the Spina Bifida Clinic at Vanderbilt and the doctors I see. It’s worth the drive. Having kids with medical issues, it’s very taxing, very different, and to have that support and know your child will have the best care and that the doctors are so knowledgeable is so very helpful.”