Health

What are some common feelings or concerns parents have regarding a child with a limb deficiency or amputation?

Having a newborn with a limb abnormality or a child who has a limb amputated can be difficult for many parents to accept. Feelings of guilt, anxiety and possibly sadness may be overwhelming and are often coupled with several questions regarding the child’s life and capabilities. Several of these questions pertain to the child’s physical and emotional well-being. Will the child be able to feed himself if he has an upper-limb deficiency or amputation?  Will he be able to walk if he has a lower-limb amputation?  Will my child develop normally?  Hopefully, the information provided here, along with the appropriate rehabilitation and prosthesis when necessary, will help parents to realize that the answer to most of these questions is yes. With understanding, parents will realize that their child with a limb deficiency or amputation will be able to lead a happy, healthy fun-filled life.

As with any child, appropriate care for those with limb deficiencies or amputations involves ensuring that their life be filled with joy, happiness and love. To assist with this, parents must understand the normal developmental milestones that occur during infancy and childhood. Additionally, they should be aware that feelings of guilt or anxiety they might develop as it relates to the child’s limb abnormality may be detected by the child, potentially affecting normal psychosocial development. Often the parents initially feel as if they did something wrong or were negligent and feel they should have done something differently. These feelings should be resisted and if necessary, counseling for the parents and possibly for any older child should be considered early in the rehabilitation process.

A peer support group where parents share concerns, exchange information or observe other children using prostheses may be helpful in coping with some of the difficult issues. Where appropriate it may be necessary to obtain professional counseling, which can be helpful in dealing with the many emotions that occur during the initial period after the infant’s birth or child’s amputation. However, common questions that parents often have include whether the child will be able to crawl, walk, play, feed himself, go to school, develop friendships and participate in various activities. The information presented here will be helpful in addressing many of the psychosocial issues as well as physical concerns pertaining to a child with a limb deficiency or amputation. In addition, many of the questions pertaining to various prostheses and their components will be answered.

Parents may need to understand that there are differences emotionally between children with congenital limb deficiencies and those who require a limb amputation. Since they are born with their limb problem, many children with congenital limb deficiencies usually do not experience a distortion of self image because they grew up with their limb-deficiency. Although they may realize that they are “different” by the time they are 1 or 2 years of age, they may not experience the same distortion of body awareness or self-consciousness as that of a child who experiences a limb amputation later in life and hence, many of these children do not need counseling. In contrast, like anyone coping with a significant altering event in life or distortion of body image, children who require an amputation may need more counseling and guidance as it pertains to their limb abnormality.

What are some common questions regarding toddlers who have limb deficiencies and the type of prosthesis they can use?

At around 1-2 years of age a child begins to verbalize needs, surf along furniture and walk. It is also at this time that infants start to understand the relationship of cause and effect. The ability to understand cause and effect is needed so that the child can be educated about how certain body movements operate a terminal device used in an upper-limb prosthesis. The initial terminal device may be shaped like a hand or small hook. Another popular terminal device around this age is the Child Amputee Prosthetic Project (CAPP).

Although the child may be 2½ years old before he fully masters operating the terminal device, he can start to appreciate that certain body motions (body-powered terminal devices) such as shoulder flexion can cause the device to open (voluntary opening). The voluntary opening terminal device powered by the child’s body movement enables the child to voluntarily open his terminal device, thereby grabbing various objects. This occurs via a cable that runs from the shoulder harness to the terminal device and tightens when the child moves his shoulder or shoulder blades. When tension is released off of the cable, the terminal device closes shut due to small rubber bands placed around the terminal device or hook. Each of these rubber bands contributes to the closing force. With more rubber bands there is greater closing force and grip strength. Alternatively, a voluntary closing terminal device may be tried. This terminal device is normally in the open position, but by pulling on the cable with graded tension, it can be voluntarily closed. In addition, if the child has a more severe or higher limb deficiency, a functional elbow joint may be incorporated into the prosthesis at this time. It works via a similar cable mechanism as the terminal device.

Fully functionaly elbow joint

Most times the child needs to understand how the terminal device works before fully understanding how to operate the elbow joint. The elbow joint enables him to bring objects closer toward his body as well as place objects in many more locations in his environment. In this way the toddler can use the prosthesis not only in play but also in learning how to feed himself.

What are some activities that parents can do to help their toddler use the upper-limb prosthesis?    

Initially, when a body-powered prosthesis is first used, the toddler may elect to use the normal limb to grab objects. However, a tip that may help the toddler start using the prosthesis more quickly is by giving him larger objects to hold. In this way, the child will be required to use both limbs in order to play with the object. Giving the toddler two objects to hold often will also cause him to put one object in the terminal device of their prosthetic limb, encouraging use. Other tricks include giving the toddler foam toys, which may more easily be picked up with an activated terminal device compared to harder objects made of wood or hard plastic.

A child may begin to realize how much force or tension is needed to pick up various objects. For instance, with a voluntary opening device, the child may start to learn that tension needs to be maintained through the cable via the shoulder harness and shoulder motions so that a fragile object will not be crushed. A wrist unit that can rotate into various positions can also be used by the toddler so that the terminal device can be in the best position to hold these objects. An occupational therapist and prosthetist are vital members of the rehabilitation team who can instruct the family and child in other skills and techniques that help incorporate the prosthesis into activities such as feeding, simple dressing, personal hygiene and drawing.

Common Goals for Toddlers with Limb Deficiencies

• Learn how to control the elbow and terminal device
• Begin using the prosthesis with their normal limb or by itself to hold objects
• Parents should provide objects that help the child use the prosthesis
• Continue to inspect the skin and prosthesis and report any problems

It is around the toddler age that a myoelectric prosthesis can be tried. A myoelectric prosthesis is a type of prosthesis often used in upper-limb deficiencies and amputees whereby the toddler’s normal nerve impulses or electrical impulses from outside of the body, are taken and converted into a signal that moves the prosthetic limb.

Although technology for myoelectric prosthesis is improving and some toddlers can learn to use them before the age of two, some available systems are still too bulky, heavy, expensive and prone to breakdown to be used in this young age group. As technology improves, hybrid prostheses are being developed that not only are lighter but combine electric with body-powered control. In this way, young children, particularly if he has bilateral involvement or short residual limbs, may be more adept at using them at younger ages.