Orthotic management is just one part of the big picture of caring for children with spina bifida (SB) and helping them to have high-quality, successful lives.
Managing bowel and bladder function is a major issue for children and parents alike. Most children, due to the lack of lower-level nerve development, have neurogenic bladders and bowels. Since they generally cannot feel the need to empty their bladder and bowels, they need to be catheterized ("cathed") several times daily and have to be on a regular bowel program. The goal is to teach the children, when they are able, to cath independently and to manage their bowels, greatly increasing their social confidence as well as helping to prevent urinary-tract infection and bowel disorders.
The majority of children with SB also have hydrocephalus, an abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, which, if untreated, can cause brain damage. The fluid is drained via a shunt, most commonly a ventriculo-peritoneal (VP) shunt, which empties into the abdominal cavity. Shunts generally must be used for life and can become clogged, break down, and have to be replaced.
Children with SB often learn and process information differently, plus they sometimes do not recognize subtle social cues, such as the signals that someone is joking, notes Kevin Felton, CO, LO, FAAOP, education coordinator for the Orthotics Department at Texas Scottish Rite Hospital for Children (TSRHC), Dallas, Texas. TSRHC provides some Saturday outings and activities in which children with SB can enjoy recreation, companionship, and also do some role-playing to improve their social skills.
Sports and recreation can go a long way toward brightening lives and developing abilities. Each summer, Felton and other TSRHC medical staff assist at an SB camp called Camp TLC, held at Camp John Marc in Meridian, Texas. Camp John Marc is a specialty camp for children with SB and other disabilities. "About 100 kids from ages 8 to 15 participate in archery, horseback riding, and other activities," Felton says.
Jacob Neufeld, MD, MSPH, chief of the Division of Pediatric Rehabilitation at Children's Hospital & Research Center, Oakland, California, also encourages sports and recreational activities, mentioning the Bay Area Outreach & Recreation Program (BORP), the leading provider and promoter of accessible sports and recreation opportunities for children and adults with physical disabilities in the greater San Francisco Bay Area.
Although caring for children with SB is no easy task for either parents or healthcare providers, it can be very rewarding. As one mother said, "It has been harder than I ever thought it would be, but when [her child with SB] comes in, she lights up the room!"
—Miki Fairley
