Spina Bifida is a birth defect that involves the incomplete development of the spinal cord and its protective covering, which happens typically in the first trimester. In the most severe form, babies can have weakness or paralysis of the lower extremities. The condition affects 1,500 to 2,000 infants born each year in the United States, according to the National Institutes of Health. First and foremost, kids with Spina Bifida should do activities that work on their postural muscles to help develop stability and balance. The postural muscles include those in the spine, hips, and calves that are most needed to maintain upright posture. In babies, it's as simple as tummy time, which is crucial because it helps develop strength in the trunk and upper body, explains Julie Gaby, occupational therapist at Arnold Palmer Hospital for Children in Orlando.
Older children can work on their core by playing in a swing or over a therapy ball. "It helps build up trunk strength," Gaby says. If they have use of their lower extremities, they can try to kick a ball or pump while they swing.
Crawling and walking are also key for little ones. Each day, babies crawl, on average, a distance that's equal to two football fields. New walkers step about 29 football fields a day. It is often difficult for children with Spina Bifida to meet those distances, but it's important for families and therapists to know these numbers to promote activity, activity, activity. If your child's skin is sensitive, you can put knee pads on her to protect her while she crawls.
Other muscle groups to focus on include upper arms, shoulders, wrists, and fingers -- all of which children will use to propel themselves and get in and out of wheelchairs.
Some kids with Spina Bifida may benefit from swimming and aquatic therapy, says Gregory G. Heuer, M.D., attending neurosurgeon at The Children's Hospital of Philadelphia. It's low-impact on the joints, and the buoyancy of water helps children who aren't able to walk. Gaby suggests having them wear aqua socks in the water if they don't have sensation in their legs and feet. This way, their feet will be protected if they scrape them on the pool floor.
Older children may enjoy adaptive sports, also known as wheelchair sports, which have modified rules for people with impairments. Power wheeling (while in a manual chair) or working out at a handicapped-accessible gym are other options. The bottom line, Gaby says: "Encourage your child to be as playful and active as possible."
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