POST-NATAL CARE
Babies with Spina Bifida should be delivered at a medical center that specializes in SB so they may receive the care that will help ensure the best possible outcome. Babies requiring surgery will be monitored in a neonatal intensive care unit. The average length of stay is 2 weeks, but this varies based on need. When the baby is discharged from the hospital, he or she will have periodic follow-up appointments with a pediatric neurosurgeon, orthopedist, urologist, and possibly other specialists. Appointments will be frequent in the first year, and usually less often as time passes.
HOW IS SPINA BIFIDA MANAGED?
As type and level of severity differ among people with Spina Bifida, each person with the condition faces different challenges and may require different treatments. The best way to manage Spina Bifida is with a team approach. Members of the team may include family members, neurosurgeons, urologists, nurses, orthopedists, physical and occupational therapists, orthoptists, psychologists, and medical social workers.
SPINA BIFIDA AND ADOLESCENCE
Many physical, mental, emotional, and social changes are associated with the adolescent and teen years. Teens and adolescents develop their own personalities and interests and want to become more independent.
This transition period can be challenging, especially for people affected by Spina Bifida. It is important for the parents and caregivers of adolescents and teens with Spina Bifida to take active steps toward making them independent starting in childhood, so that by the time they are older they can develop the necessary skills to help them reach their full potential.
Physical Health: As people with Spina Bifida mature, they will perform more and more activities themselves. Most teens will dress and bathe themselves, manage their bathroom plans, and move about independently in their homes and communities. They might begin to make their own doctor appointments and continue to participate in updating their own Individualized Education Plan (IEP) or 504 Plan, if they have one. They also should participate in a seating or wheelchair evaluation at least once each year if they use a wheelchair. This evaluation will make sure the wheelchair fits correctly and makes moving as easy as possible.
Mobility and Physical Activity: People with Spina Bifida higher on the spine (near the head) might have paralyzed legs and use wheelchairs. Those with Spina Bifida lower on the spine (near the
hips) might have more use of their legs and use crutches, braces, or walkers, or they might be able to walk without these devices.
EARLY DAYS: No two babies with spina bifida are exactly alike. Health issues will be different for each baby. Some babies have issues that are more severe than other babies. With the right care, babies born with spina bifida will grow up to reach their full potential.
A physical therapist can work with adolescents and teens to teach them how to exercise their legs to increase strength, flexibility, and movement.
Regular physical activity is important for all teens and adolescents, but especially for those with conditions that affect movement, such as Spina Bifida. CDC recommends 60 minutes of physical activity a day. There are many ways for teens and adolescents with Spina Bifida to be active. For example, they can:
- Engage in physical activities with friends.
- Roll or walk in the neighborhood.
- Lift weights.
- Participate in sports activities (for example, swimming) and on teams for people with and those without disabilities.
- Attend summer camps and recreational facilities that are accessible for those with disabilities.
See the resources below to learn more about Spina Bifida and its treatment.
EP Magazine thanks the Spina Bifida Association and the CDC for providing the above information.
NO BACKING DOWN : MORE ABOUT SPINA BIFIDA
SPINA BIFIDA ASSOCIATION
www.spinabifidaassociation.org
CDC: SPINA BIFIDA