How Children Adapt to Their Disability

How do children with bilateral upper-limb deficiencies or amputations adapt to their disability? Should these children be forced to use a prosthesis?

Infants and children with congenital bilateral upper-limb deficiencies generally develop a remarkable ability to adapt to their situation. For instance, children with missing hands or forearms develop amazing tactile discrimination of the remaining limbs. They are able to use the residual limbs as functional hands, allowing them to hold objects and perform many of the necessary tasks involved in daily living. In fact, children with shoulder disarticulations or complete absence of one or both upper limbs may elect not to use a prosthesis at all. Many prefer to rely on their lower limbs in place of an upper limb(s) to perform typical activities of daily living such as bathing, dressing and feeding.

Interestingly, since they are born with the limb deficiencies they do not have a distorted sense of body form that may occur if the limb or limbs were amputated later in life. Therefore, many may not feel the need for any type of prosthesis even for cosmetic reasons; any attempts to force the child to use one should theoretically be resisted.

Although not one type of prosthesis is ideal for all bilateral upper-limb amputees, some generalities can be made. For example, bilateral upper-limb amputees and even some unilateral high level amputees prefer a hybrid prosthesis, which combines a myoelectric prosthesis on one side with a body-powered prosthesis on the opposite side. Often, one side may be fitted with a more powerful terminal device to carry heavier objects whereas the other terminal device performs more delicate functions such as doing arts and crafts, fastening buttons or touching more fragile items. These terminal devices may be voluntary opening or closing depending on the age and appropriateness for the child. In general, whether or not a child will be a long-term user of an upper-limb prosthesis seems to be an individualized choice.

What are some of the common things a school-aged child should be able to do with a prosthesis? What are some issues concerning the upper-limb prosthesis at this age?

School-aged children continue to engage in various forms of play but also should be able to toilet and dress themselves independently. The child with an upper-limb deficiency or amputee should be able to accomplish these skills just like any other child of similar age. Most of the concerns at this time deal with maintaining proper socket fit. One tip that helps prolong the life of a socket is to initially use a larger socket with several socks as liners that take up space inside of the socket. Then as the child grows, a sock may be removed as needed to maintain the proper fit. The child may also want to use different terminal devices that enable him to play various sports or play musical instruments.

Additionally, a terminal device shaped like a hook rather than a hand may be more acceptable for achieving functional daily activities.

A myoelectric prosthesis with voluntary opening and closing capabilities could also be revisited if one was not successfully used before. Because of the abuse that some children may give to these units, as well as their expense and tendency to break, a body-powered prosthesis with shoulder harness may continue to be the best option. Goals that a school-aged child should achieve are listed in Table 3.

Goals for School-Aged Children

• Hold fragile objects with the prosthetic limb without breaking or dropping them
• Operate the terminal device reliably
• Don and doff the prosthesis without anyone’s assistance
• Be able to dress without anyone’s assistance
• Begin to recognize when the prosthesis doesn’t fit well
• Parents should encourage use of the prosthesis by the child in all activities

Can children with congenital limb deficiencies or amputations participate in activities and play sports?

Most children function quite normally with a congenital upper- or lower-limb deficiency; however, they may need assistance in figuring out ways to do certain activities like riding a bike, playing in a playground or participating in sports. Adaptive equipment and various sports prostheses are available that can accommodate most limb deficiencies. Some children, however, may chose to play sports without a prosthesis and will function quite well. In fact, there have been professional and Olympic athletes with limb deficiencies in football and baseball. As with all children, parents should encourage these children at least to try as many activities as they wish, hopefully finding one that they can enjoy for the rest of their lives.

For the child who does use a lower-limb prosthesis, parents are encouraged to cover it with some type of rigid outer shell known as an exoskeleton. This helps give the prosthesis a more lifelike lower-leg appearance and also it helps protect other children from the rigid and potentially harmful interior or endoskeleton of the prosthesis.