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

Children with congenital limb deficiencies (born without one or more limbs) feel different from their peers. They may feel sad about limbs they never had and wonder “Why did this happen to me?” or “Why is it so hard for me to do this?” They are also likely to grieve not having four “normal” limbs. girl and woman dancing while wearing prosthetic legsChildren with acquired amputations (one or more limbs amputated during childhood) may also have feelings like these and wish to turn back the clock to a time before amputation.

Children must make a lot of physical (body) and emotional (feelings) adjustments to major body changes like these. Physical adjustments often depend on where and how high the amputation is. Emotional adjustments can vary from child to child and are not always in keeping with the extent of amputation. I have seen children lose entire legs adjust more quickly those who lose part of their feet.

Children often blame their parents

As parents, you will be involved in many choices about your child’s surgery, rehabilitation, prosthetic use, hobbies, athletic activities, physical education, and even summer camps. You can count on one thing – your child will almost always find fault and blame you.

Children with limb loss often have battles with their parents about prosthetic use and activities. There will be times when they say you are too hard on them. In fact, many children say their parents are harder on them than they are on brothers or sisters without limb loss. Looking back as adults, many of these children now are glad their parents challenged them. They have more regrets about what their parents did NOT make them do, such as “Why didn’t my parents make me take physical education classes?” or “Why didn’t my parents let me play soccer?”

Parents try to protect their children from failure, teasing, and other struggles. But protecting them too much can cause children to be less able as adults. A wise parent will say, “I love you and you need to try this.” Yes, it can be very hard for parents to keep this sense of balance. I think of what St. Francis de Sales said, “Do not lose your inward peace for anything whatsoever, even if your whole world seems upset.”

Ages when children start using prostheses

Parents want to know when children should start using prostheses. There is no one right answer but here are some guidelines that often apply:

  • Prostheses are not often given to infants. Prostheses should match functional goals such as sitting up, reaching, grasping, crawling, standing and walking. Infants are too young for these goals. Using prostheses too early prevents very young children from touching and feeling skin sensations with residual limbs.
  • Children are often ready for lower-limb prostheses when they go from crawling to standing. This happens between the ages of 9 and 16 months. Experts do not agree whether children should use lower-limb prostheses when crawling and starting to learn about the world around them.
  • Children are often ready for upper-limb prostheses when they start to sit and use both hands. This happens between the ages of 3 and 7 months. A child’s first prosthesis can help with crawling, pushing, and pulling to sit or stand.
  • Children are ready for upper-limb functional prostheses, one that has moving parts, when they are between 1 and 2 years old. This is a time when children start doing more complex activities such as grasping and handling a small object like a crayon and passing objects from one hand to the other. At this time, children can learn how to use their muscles to open and close the terminal device (at the end of the prosthesis). I am always impressed how young children learn these skills so well.

About younger children

Parents, do not be surprised if your young child does not want to wear prostheses. Children often make this choice because prostheses may hurt or not feel comfortable. Many children also want to feel skin sensations and do not like how prostheses keep them from doing so. I have seen many children without arms choose to use their feet, not prostheses, to move objects.

Girl wearing prosthetic leg in running stanceAbout teenagers

Teenagers with limb loss have the same “growing-up” problems as their peers -- and then some. Limb loss can make this time harder because teenagers do not want to be different from their friends. They may try to hide their limb loss. For instance, teenagers with lower-limb loss may not want to swim or do other activities that expose their legs. It is harder for teenagers to hide upper-limb loss because hands are so easy to see. Teenagers are less apt to hide limb loss once they feel liked by friends.

Almost all teenagers fight with their parents. When teenagers have limb loss, they may fight about using prostheses. Sometimes this goes to extremes when teenagers refuse to wear prostheses. I know parents who insist children wear prostheses all the time, even in their room at night. To me, this is not helpful and only gives teenagers more reasons to rebel.

Many teenagers today are less awkward about limb loss. In part, this is because it can be “cool” to have high-tech prostheses. It also can be because actors with limb loss are now seen on TV and in the movies.

Boys wearing prosthetic legs are ready to go canoeingAbout young adults

Teenagers become young adults between the ages of 18 and 21. As young adults, they “graduate” from the children’s healthcare system and now must do more things for themselves. This can cause problems as they start to realize, “Hey, I really am on my own now.”

Young adults may also find that there are fewer health professionals who know how to manage their special needs. Young adults may sometimes feel frustrated and want to give up. Of course, this is not helpful. Many young adults agree that it is worth the extra effort finding health professionals to help them graduate into the adult healthcare system.

Children of all ages are amazing

Children with limb loss are some of the most amazing people I have ever met. I am always impressed by their level of confidence and success. Making the needed physical and emotional adjustments seems to bring out the best in children of all ages. As Albert Camus wrote, “In the depth of winter, I finally learned that there was in me an invincible summer.”

 

Acknowledgments

Portions of this column are from:

  • “Prostheses for Children with Limb Deficiencies: Issues and Expectations,” by Douglas G. Smith, MD and Kellye Campbell, RN, ARNP published in the magazine, Expectations: Parenting Children and Teens With Limb Differences
  • Atlas of Amputations and Limb Deficiencies, edited by Douglas G. Smith, MD, John W. Michael, MEd, CPO, and John H. Bowker, MD (“Chapter 61” by John R. Fisk, MD, and Douglas G. Smith, MD and “Chapter 63” by Joan E. Edelstein, MA, PT, and Chapter 64 by Donald R. Cummings, CP, LP).

Translated from Congenital Limb Deficiencies and Acquired Amputations in Childhood, Part 2: Emotional Response and Early Management.
http://www.amputee-coalition.org/inmotion/mar_apr_06/congenital_part2.html

Last updated: 02/05/2009
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