Orthopedic Needs and Care

If you know of resources, please email sbaa@sbaa.org.

Parents

  • Many babies with Spina Bifida have orthopedic problems, such as clubfoot, dislocated hip(s), spinal curvatures, and contractures (tightness) of the knee, hip, and/or ankle. Along with the physical therapist, your orthopedist will decide what kinds of surgery, equipment, or braces your child may require as he or she grows. Each case must be individually evaluated and treated by an orthopedic surgeon.
  • Avoiding contractures (tightness) at the hip, knee, and ankle is important for brace fitting later on and for success in daily living activities. Stretching programs and developmental exercises can assist in maintaining flexibility.
  • Some orthopedic problems develop over time as a child grows. Spinal curvatures, progressive foot deformities, and contractures are among the most common. Any rapid changes call for a referral to the neurosurgeon to make sure there is no underlying neurological cause.
  • An overall goal of orthopedic treatment for the child with Spina Bifida is to provide support for normal development and function. It is important for children to maintain as much mobility as possible, as reduced mobility may lead to obesity.
  • An orthopedist or physical therapist may recommend a wheelchair as early as 18 months, or when a child can propel their chair safely in their environment. Children need an independent mode of mobility before they start school. If your child needs a wheelchair, obtain it and allow the child to get used to it before school begins.

Recommended Reading for Parents

Guidelines for Spina Bifida and Health Care Services Throughout Life, Edited by Karen Rauen
Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board


Teens

  • Continue with annual visits to an orthopedic surgeon, who will periodically order x-rays.
  • Focus on flexibility, with position changes, stretching, and exercise. Regular aerobic exercise, upper body weight training, and recreational sports can help maximize your abilities.
  • Learn to maintain your orthotics and wheelchairs by keeping them in good repair, and checking daily to be sure that pressure-relieving cushions are working properly. Daily foot and skin checks are extremely important.
  • The most important thing you can do for the health of your bones and muscles is to have good nutrition and regular exercise. This will also help you maintain a healthy weight.

Recommended Reading for Teens

Teens on the Move
SBA produced this exercise video in collaboration with the National Center on Physical Activity and Disability (NCPAD). Copies are available through NCPAD.
www.ncpad.org
800-900-8086


Adults

  • Maintain a healthy weight. It helps you feel good about yourself and may make it easier for you to keep up with other adults in social situations and at work.
  • The best and safest way to lose weight and improve your health is to eat a balanced diet, reduce the number of calories you eat daily, and participate in some form of physical activity and exercise each day.
  • Physical activity and exercise are an important part of a healthy lifestyle. Before you begin an exercise program, you should talk with your health care provider and discuss the effects of your medical condition.
  • Your state representative’s office has a health staff person who can help you get access to exercise and recreational activities that should be open to you under the Americans with Disabilities Act.

Recommended Reading for Adults

Guidelines for Spina Bifida and Health Care Services Throughout Life, Edited by Karen Rauen
Health Guide for Parents of Children Living with Spina Bifida, Edited by the SBA Editorial Review Board


Resources

Organizations that Can Help Parents & Teens

The following are companies that manufacture helpful devices that may be used to increase mobility and function. We also recommend that you research options that may be available in your region of the country for your insurance options. A vendor listing does not imply endorsement of products. This listing is for informational purposes only.

Adaptive Mall.com
Bergeron Health Care
15 South Second Street
Dolgeville, NY 13329
800-371-2778
www.adaptivemall.com

Prime Engineering
4202 Sierra Madre
Fresno CA 93722
559-276-0991 / 800-827-8263
www.primeengineering.com

Cascade Dafo, Inc.
1360 Sunset Avenue
Ferndale, WA 98248
800-848-7332
www.dafo.com

Rifton Equipment
PO Box 260
Rifton NY 12471-0260
www.rifton.com

Invacare
One Invacare Way
Cleveland, OH
800-333-6900
www.invacare.com

SouthwestMedical.com, LLC
505 W. Thomas Road
Phoenix, AZ 85013
800-236-4215
www.quickie-wheelchairs.com


Organizations that Can Help Adults

Physical Activity/Nutrition Links

American Canoe Association: www.acanet.org
Centers for Disease Control and Prevention, National Center for Chronic Disease Prevention and Health Promotion, Division of Nutrition and Physical Activity: www.cdc.gov/nccdphp/dnpa
Disabled Sports USA: www.dsusa.org
Menu Planner - National Heart, Lung, and Blood Institute of the National Institutes of Health: hin.nhlbi.nih.gov/menuplanner/menu.cgi
MyPyramid Plan: www.mypyramid.gov
National Center on Physical Activity and Disability: www.ncpad.org
Water Skiers with Disabilities Association: www.usawaterski.org
Wheelchair Sports, USA: www.wsusa.org
YMCA: www.ymca.net

Please Note: These resources and information are reviewed periodically. They do not represent all of the resources currently available on a topic. If any updates are needed or if you would like to recommend a resource, please email the Resource Center at sbaa@sbaa.org.