uc davis health - shriners hospital partner to provide expertise to spina bifida patients

EEvery six months, Remington MacCullough travels from Esparto, Calif. to the Spina Bifida Clinic at Shriners Hospitals — Northern California in Sacramento and gets his ultrasound. He knows the drill. He knows the faces. They're the same faces that have followed and cared for him since he was an infant. “We have been going here since he was six months old. He gets an ultrasound. They look at the health of his kidneys and his bladder and then he goes to meet with his doctors and talk about the results,” said Chloe MacCullough, mother of Remington. It is the routine for many spina bifida patients in inland Northern California. For more than 25 years, UC Davis Children’s Hospital has partnered with Shriners Hospitals for Children — Northern California to serve children with spina bifida. The Spina Bifida Clinic, located across the street from UC Davis Children’s Hospital, is a unique collaboration in its region, blending the expertise of UC Davis with Shriners, including physicians, registered dietitians, physical and occupational therapists, and ultrasound technicians in a child-friendly facility. It’s a place of support and healing for children with spina bifida, and since 2016 when the UC Davis Fetal Care and Treatment Center opened, it has been a place for children who have been treated with spina bifida in the womb. “I think our partnership offers children with the best of both worlds,” said Maya Evans, medical director of the Spina Bifida Clinic. She splits her time working with children in physical medicine and rehabilitation (PM&R) at both facilities. “Our physicians come from PM&R, pediatric orthopaedics, pediatric neurology and pediatric urology. This arc that we offer provides a nice continuity of care for children who started with fetal surgery at UC Davis and takes them through adulthood.” Chloe MacCullough notes that the intimate setting at Shriners has been comforting and that the staff have been incredibly kind and patient. As for Remington’s doctors? “We meet Dr. Maya Evans each time and talk

about Remi’s general wellbeing, his mobility, have we noticed anything new. She is very kind and we have a great rapport with her,” MacCullough said. As for the services that MacCullough has used, in addition to the Spina Bifida Clinic, they visit the Pediatric Orthotic and Prosthetic Services (POPS) Clinic to get customized orthotics for free. The orthotics clinic provides state-of-the-art orthotics and prosthetic devices using computeraided design (CAD) technology and fabrication machines. They add child-friendly designs in bright colors and prints. Kids can pick out their print, as well as the color of the straps. Remington’s first set of orthotics had a dinosaur print. His latest set are camouflage. He loves them, said MacCullough. And while Remington is still a few years away from starting school, Shriners also has a coordinator dedicated to help ensure that children receive needed accommodations when they start or return to school. Spina bifida patients are protected under Section 504 of the Rehabilitation Act of 1973. “The 504 accommodations take into account their academic needs and physical needs,” said Margaret Kugler, coordinator of educational and vocational services at Shriners Hospitals for Children - Northern California. “I often educate the school staff so they understand the patient’s challenges and can think as a team about how they are going to help this child meet the state standards. It’s just one example of how we help children bridge the transition back to school.” Once children reach the age of 18, UC Davis Medical Center is the next step in their care and can provide comprehensive services for adults with spina bifida. It is what caregivers call lifespan care. “The partnership between UC Davis and Shriners has given our family peace of mind when it comes to creating a plan for our son’s overall health. Knowing Remi has doctors who are working together to ensure he has the best care has made all the difference as we navigate his medical journey. The Spina Bifida Clinic at Shriners is a huge part of this, where we gain knowledge and equip Remi to live a full and successful life,” Chloe MacCullough said.

while Remington is still a few years away from starting school, Shriners also has a coordinator dedicated to help ensure that children receive needed accommodations when they start or return to school. Spina bifida patients are protected under Section 504 of the Rehabilitation Act of 1973. Remington's orthotics; a happy Remington at 2 years old "

"care at uc davis connexions 43 Together, the Northern California Shriners Hospital and the UC Davis Children’s Hospital has ranked as one of the nation’s top providers of pediatric orthopaedic and pediatric urology care by U.S. News and World Report.