Assistive Equipment: Infants and Children
Infants and children with spinal muscular atrophy (SMA) can have difficulty with daily tasks because of low mobility. However, assistive equipment can increase mobility and independence. This refers to devices that help people carry out daily tasks, like walking, using a computer, and eating.
Advances in technology make it possible for children with SMA to perform more activities on their own. For example, new wheelchairs and braces improve mobility and active participation at home and in school. Wireless technology and tablets also allow children with SMA more control over their environment.
Children with SMA who cannot walk greatly benefit from a wheelchair, once they are old enough. Wheelchairs can increase freedom and independence. Independent mobility can also relieve stress on caregivers and families. Talk to your insurance provider about the types of wheelchairs covered by insurance.1
Many types of wheelchairs are available for children with SMA. Manual wheelchairs can be controlled from the chair or pushed by a caregiver. Power chairs are controlled electronically with a joystick. The joystick is usually placed on the side of the dominant hand. However, they can be customized to fit each person’s needs. Children as young as 18 months old can learn how to use power chairs. Talk to your care team for suggestions on what wheelchair is right for your child.1-3
Adaptive strollers are lighter and more portable than wheelchairs. They can be customized to ensure good posture and comfortable positioning. Accessories can also carry medical or other equipment. These are often used before a child is big enough for a wheelchair. Ask your care team and insurance provider about what types of adaptive strollers are available.1,3
Wheelchair lifts can make life easier for children with SMA. Lifts can help children in a wheelchair move between floors. Other home modifications include ramps, wide doorways, and adjusted bed heights. An occupational therapist can suggest ways to increase accessibility at home and school.4
A car bed allows children with SMA to comfortably lie down in the car. Car beds are car seats that lie flat. These are especially important for infants with type 1 SMA. Traditional upright car seats can cause problems with blood oxygen levels, especially during sleep. Ask your care team if your child needs a car bed. They can suggest car beds suitable for your child based on their age and size.3
Children with SMA commonly use braces (orthoses) to support posture and range of motion. Many types of braces are available. For example, back braces can support positioning and prevent scoliosis (curvature of the spine). Talk to your doctor about back braces that do not restrict breathing function.2
Arm and leg braces can help with range of motion and walking. For example, ankle-foot or knee-ankle-foot braces support leg muscles for walking. Clothing with built-in bracing is also available. Talk to your care team about bracing options.2
Children with SMA who cannot stand independently can benefit from a stander. Standers help with balance and weight-bearing. This can improve bone and muscle strength.1,3
Some standers are stationary, while others can be moved. Standers can be configured to meet each person’s specific needs. For example, children who primarily lie face upward benefit from a stander that holds their head slightly behind their feet. Sit-to-stand standers let children transition between sitting and standing positions.1,3
Even with wheelchairs, simple tasks at home can be more difficult for children with SMA. For example, turning lights and televisions on and off may be tougher.
Wireless technology can allow children with SMA more control of their environment. They can control televisions, lights, heating and air conditioning, speakers, and much more from a tablet or smart device. Talk to an occupational therapist on your care team about how wireless devices can increase your child’s independence.
Tablets are smaller and more accessible than laptops or desktop computers. They also can be customized to fit personal needs. For example, they can include digital assistants, voice recognition, and other accessible features. Tablets also make socializing and education more accessible. Accessories can mount the tablet directly to the wheelchair.
Other assistive equipment
Many other devices and accessories to make life easier for children with SMA are available. An occupational therapist can suggest equipment based on your child’s specific needs.
Some assistive equipment is used to support breathing and feeding. Your doctors will suggest when these devices are necessary, depending on the severity of the disease. This includes:3,5-7
- Cough assist machines
- Breathing support machines, such as bi-level positive airway pressure (BiPAP)
- Vests and other devices that help loosen mucus in the lungs
- Pulse oximeters, which measure blood oxygen levels
- Feeding tubes to help with nutrient intake