Original article by Douglas G. Smith, MD
Translated into plain language by Helen Osborne of Health Literacy Consulting

Douglas Smith, MDChildren with limb loss and their parents often have many questions about prostheses. They may also have a lot of opinions and not always agree about what to do. For instance:

  • Who decides if a child wears a prosthesis? This is a problem when a child does not want to use the prostheses but his or her parents are sure it will help.
  • What, if any, types of prostheses are needed for children with upper-limb (arms or hands) versus lower-limb (feet and legs) loss? Arms and legs are very different so the criteria for decision-making about when to use a prosthesis and what type to use are very different for the two types of limbs.
  • When should children wear prostheses? Should the prosthesis be used all the time, just sometimes, or not at all?

How do young children and parents decide about prostheses? How do teenagers and parents decide about prostheses?

This article looks at issues like these. It includes answers to questions that children and their parents often ask.

Should children or parents decide when to wear prostheses?

Boy wearing prosthesis holding tennis raquet and ball; girl sitting wearing prosthesisSome parents insist that their children wear prostheses all the time. Other parents let children decide for themselves. In my work treating children with limb loss, I find that there can be a happy balance between these points of view.

This balance can change as children grow. For instance, parents make most decisions for small children. But as children grow and become teenagers, parents may give them more leeway to decide. It is important to keep in mind that children adapt differently to prosthetic changes than adults do. Children generally have an easier time with things that are new or different.

How often do children need new prostheses?

Bilateral below-knee amputee on rock climbing wallAs children grow, they outgrow their prostheses just like they do shirts, pants and shoes. But prostheses are not as easy to replace as clothes. Most doctors agree that children need time to adjust to prostheses. Dr. Claude Lambert ( University of Illinois) studied how often children new lower-limb prostheses. His research suggests that:

  • Children (1 to 5 years old) need new prostheses once a year
  • Children (5 to 12 years old) need new prostheses once every 1 to 2 years
  • Children (12 to 21 years old) need new prostheses once every 3 to 4 years

Sometimes children need new prostheses more often. This can happen when children gain or lose a lot of weight, get skin ulcers, or have bone problems (such as “bone overgrowth”) which require surgery.

How can prostheses be adjusted to fit as children grow?

Since prostheses cost a lot of money and take a long time to fit, they should be designed to last as long as possible. Here are some ways:

  • Have modular features. This means that some prosthetic features come apart and each can be adjusted or replaced as children grow. For instance, modular features allow doctors to adjust limb length to match the child’s other arm or leg.
  • Include foam padding. Many doctors suggest that children get prostheses slightly too big. This allows extra space for foam padding that is taken out as children grow.

What about technology?

Many children, like adults, see some new piece of technology and think, “That’s cool. I want it!” While I am a big fan of using technology in prostheses, I also know that problems can happen.

This can be when parts have to be plugged in, batteries wear out, or even a little water in the wrong place causes a lot of damage.

Sometimes simpler prostheses work better, last longer, and need less repair. I have heard prosthetic wearers of all ages say, “Although technology looks great, I am happy with a simpler prosthesis that needs less care.”

There’s no right or wrong answer when it comes to prosthetics and technology. Think about your child’s needs and your family’s lifestyle. Be practical and match the technology to your child’s goals, needs, and limitations.

Who decides if and when children wear prostheses?

Are parents always the ones to decide about their children’s prostheses? And if so, are parents making the right choice? These questions are hard to answer because there are so many changes as children grow.

It can be quite easy to decide about prostheses for children with lower-limb loss. This is because children need prostheses to help them walk and balance. But making a choice about upper-limb prostheses can be more complex. This is because children can get very good at doing activities with one hand and not want to use a prosthesis.

Some parents want children to start wearing prostheses as soon as they can. Parents may say this is the best way for children to be independent. But the children may complain and say to their parents, “You are being too hard on me!” In my practice, I see many young adults who now are glad that their parents made them use prostheses.

I also know many parents who want their children to decide. “Why make children wear prostheses if they do not want to?” These parents believe that children find ways to avoid doing things they don’t want to do.

Children may be willing to wear prostheses sometimes, but not always. They may complain that the prosthesis is hot, hurts, or no longer fits. If so, find out if there are ways to adjust the prosthesis or if it is time to get a new one.

Some children refuse to wear prostheses because they want to feel the air on their skin. This allows children to touch and feel which provides feedback about their environment.

There are also times when children refuse to wear prostheses because they are cranky or want to be contrary. Just because a parent says “Yes,” the child may say “No!” Here are some ways parents can encourage children to wear prostheses:

  • Make a game out of wearing the prosthesis.
  • Let your child put prostheses on teddy bears, dolls, or other favorite toys.
  • Use a sticker chart or other type of game to help your child see wearing the prosthesis as a part of his or her life and routine, similar to brushing teeth and making the bed.
  • Be willing to sometimes let your child decide. When children say, “Don’t treat me like a baby. It’s my body!” take time to listen to your child’s point of view.

Other than parents and doctors, who can help children with limb loss?

Teen girl smiling.Many people can help inspire children and serve as role models. They include:

  • Family. Brothers, sisters, aunts, uncles, and other family members can help children with limb loss. It helps when everyone in the family talks about prostheses in the same way. It does not help children when they see family members act one way in public and another way at home.
  • Adults with limb loss. Children learn a lot when they meet successful adults with limb loss. Meeting a world-class swimmer, for instance, shows children that they can do great things in this world. Even if they won’t ever be the world’s fastest swimmers, children can learn that there is greatness inside each of them.
  • Other children with limb loss. It is good for children with limb deficiencies to sometimes be with others going through the same thing. This lets them compare experiences and talk about their feelings. I know of a girl who never met another person with limb loss until she went to summer camp for kids with limb deficiencies. For the first time in her life, this girl realized she was just a “regular kid” like everyone else.

There are many questions and often no clear answers when it comes to children and prostheses. What is important is how children and their parents deal with these issues. Says the famous football coach Lou Holtz, “Adversity is another way to measure the greatness of individuals. I never had a crisis that didn’t make me stronger.”

 

Translated from Notes From the Medical Director
Congenital Limb Deficiencies and Acquired Amputations in Childhood, Part 3
Prosthetic Issues for Children
http://www.amputee-coalition.org/inmotion/may_jun_06/congenital_part3.html

Last updated: 02/05/2009
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