Love, closeness, and a “can-do” spirit are the qualities that stand out most when talking with families who have a child with spina bifida. Life with spina bifida isn’t a Sunday walk in the park—challenges they may confront include mobility difficulties, bowel and bladder complications, hydrocephalus, learning difficulties, psychosocial issues, and multiple surgeries.
The parents interviewed here and in the feature story in the May 2009 issue of The O&P EDGE are involved with the Family Village Project of the Waisman Center of the University of Wisconsin-Madison, coordinated by Linda Rowley, Family Village project coordinator and senior research specialist. However, they are from across the United States and receive and give support and practical advice via an online forum (Editor’s note: For more information, visit www.familyvillage.wisc.edu and www.waisman.wisc.edu/~rowley/sb-kids/). Although the parents participating in the following interviews happen to be mothers, fathers and stepfathers also play a vital role in the lives of many of these children.
Susan Collins’ daughter Julia Grace is a 13-year-old eighth-grader. (To read an interview with Julia Grace, see pg. 22 of the May 2009 issue of The O&P EDGE or go to www.oandp.com/articles/2009-05_01.asp). Julia Grace has an older sister, Jessica, 18, who is a senior in high school; and an older brother, Christopher, 16, who is a high-school junior.
Julia Grace has enjoyed a variety of recreational activities. Every summer, she attends a camp for kids with spina bifida (SB), called Camp Carefree, and has attended the Victory Junction Gang camp as well (www.victoryjunction.org). She went to a preschool for kids with physical disabilities, where she started therapeutic horseback riding. She continued horseback riding until about age eight; then hip problems made it impossible for her to sit astride a horse, and she didn’t like side-saddle. She started riding a handcycle around age six. She joined the Charlotte Rollin’ Bobcats wheelchair basketball team in 2006 and practices every Monday from August through March. Through the Bobcats’ coach, Dave Kiley, and Turning Point (www.turningpointnation.org), she has tried downhill skiing. While she likes skiing itself, she dislikes the ski lift. She has also attended a local group called Winston-Salem Adaptive Arts and Sports Program (WAASP), but has not attended this year due to traveling, illness, or other plans.
Medical Care, Follow-up
Julia Grace was born via C-section and transferred immediately after birth to a children’s hospital. “We knew about the SB prior to birth, so she had a neurosurgeon before birth, who closed her back and implanted her shunt the day after she was born,” Collins says. “She was born with severe hydrocephalus, which was monitored during my pregnancy.”
Julia Grace, like most children with SB, receives quite a bit of follow-up care. She sees a neurosurgeon at least once a year, “unless we have something we have a question about and she is seen as needed,” Collins adds. Julia Grace has had the same shunt since she was six weeks old and has had no revisions since then. “She sees a urologist annually for tests—VCUG, urodynamics, and renal ultrasounds,” her mother says. “She sees a family physician more than most people, thanks to lots of urinary tract infections, yeast infections, and other issues. She currently is seeing an orthopedic surgeon about every three-four months for scoliosis as well as some muscle tightness and imbalances.” She receives home physical therapy as needed, which has been averaging about four times a year. During these sessions, Julia Grace learns stretches and exercises, which she does about four times a week.
Helping SB Kids Attain Goals
Collins has a number of recommendations for parents of children with spina bifida to help their children achieve happy, fulfilling lives and reach their personal goals.
“Don’t limit the child by their diagnosis. If there is an activity that your family likes, find a way for your child to participate. If your child can’t ride a bike, he or she can still go on bike rides on a booster bike seat or on a tandem bike. Older kids may like to try a handcycle. Give your child chores and try hard not to pamper him or her. Let them fail and try harder to achieve. Things don’t always come easy to anyone, so failure is a part of success. Prepare for the worst, but expect the best. Know what problems your child may have, learn how to deal with them, but don’t go looking for problems if there aren’t any. Expect the same from the child with SB as you do their siblings. Talk to them as if they will achieve their goals—such as “when you go to college” instead of “if you go to college.”
Support Group Benefits
Collins says the online support group “has been great. We hear about new treatments and such before many of our doctors have. We can find out what has worked for another child if what we are doing isn’t working. We can talk about what doctors in other parts of the country, or world, do that may be different from what we do locally. We always know we are not alone in any struggle we may face.”