Wearing a Prosthesis – a Parent’s Perspective

By Melanie Folkerts

One of the most difficult decisions for the parents of a child born missing a limb is whether or not to fit that child for a prosthesis, and if so, when. For those with lower limbs, it seems that the decision is much easier to make. It comes down to a question of mobility. Upper limb decisions are much more difficult to make. Each decision is so very personal; every child is so very different, even each level of amputation is different – what works for one set of parents and their child may not work for another. The best way to make that decision seems to be to get all of the information one can find, talk to prosthetists and parents, and then make the decision that is best for you and your child.

My husband Tim and I have faced that very decision. We chose to fit our daughter with a prosthesis. All during the time we have watched our daughter grow, we have tried to gauge if we made the right decision for her – and for us. Although we might do a few things differently if we had the entire process to do over again, we both agree that, for us, fitting our daughter was the correct decision to make. I would like to share our experience, so others might have just one more bit of information to use as they come to their own decisions.

Our daughter Beth was born in May 1991 with a congenital absence of her left arm above elbow (AE – about halfway between her elbow and her shoulder). She was our first child – not only were Tim and I faced with the rigors of parenthood, but also were we faced with the completely surprising element of our child missing a limb. It was at this point that we discovered the almost complete lack of books dealing with child amputations or even of books dealing with the broad subject of amputations at all unless the books were twenty years old or more. We combed through magazines, we called every support network we could find in our area, we spoke with doctors and specialists, we wept, and we prayed. Then we found the two most helpful things in our decision-making process – a book from my mother and an actual person with a congenital amputation.

The book was called “Playing from the Heart: A Portrait in Courage” by Roger W. Crawford and Michael Bowker. It was written by a young man with congenital anomalies on all four of his limbs. It shared with us the story of Roger Crawford’s life and how he had become a professional tennis coach as well as a professional motivational speaker. I think it gave us the ability to look at our daughter’s future as a tomorrow filled with potential rather than a tomorrow lined with fears and failures.

The person was a young lady who walked into the credit union where I worked. She had a partial thumb and four nubbins on her right hand. I gathered up the courage to break through the social custom of ignoring such differences and explained that I was a new mother to a child without an arm. I asked her for any advice or help she could share with us. She told us about the prosthesis she had which she occasionally used. It was a myoelectric hand. She had gotten it through the Shriners when she was 13 years old. She admitted that while there were some positive things about its use for her, she did not use it much because she had gotten it so late in her growing years that she did not want to take the time to see what it could do for her beyond some very simple things – she had already figured out how to do most things without a prosthesis. This woman provided us with a real example of the possibilities for our daughter.

We decided to have our daughter fit for a prosthesis. We believed (and still do) that by learning and growing with a prosthesis, our daughter would have the opportunity to learn what the device could do for her and also what she did not need it to do, and then down the road Beth would have the needed information to make an informed choice as to what worked best for her in any given situation. We did not want to hear in our daughter the regret that we heard in the young lady’s voice when she wished her parents had fit her earlier, so she might have had an easier time with the prosthesis. We wanted the best for our daughter, and, for us, that meant giving her every opportunity that we could – even if later Beth decided not to use a prosthesis at all, she would have made that choice out of experience, not the inability to use one effectively.

Beth received her first prosthesis at the age of eight months. By this time she could sit up well and was nigh on to walking. The prosthetists advised us to have her wear her “arm” all of the time. We followed this only somewhat. At first, we were more concerned with length of wear, and then we realized that the last thing we wanted was frustration aimed at a device that was supposed to be a help. At this point, Beth would take her prosthesis on and off whenever she wanted to. It became a toy.

Here is the main difference we would make if we could. We would not fit our child as early as we did. From early on, pediatricians, friends, and even strangers on the street came up to tell us about the “miracles of modern medicine” or some show on TV where a guy got “new hands.” At almost every visit to an orthopedist or a prosthetist as a follow up on every possible choice we had for our daughter, we were advised to get a prosthesis as soon as possible – to provide “balance” or “more functionality.” Not having heard anyone say, “It’s o.k. to wait a year or two,” we followed the professionals’ advice. Since Beth could choose to wear it or not, we believe that we did no harm with such an early fitting, but it was a bit ridiculous to have such an expensive “toy.” Looking back, we would have waited until Beth was about two, when her vocal skills and motor skills were up to the challenge of learning about a new “tool,” not “toy.”

Since that time Beth has had many different prostheses – each new one a little different from the last. We have learned more and more to enlist Beth’s comments in deciding if each change was an improvement or not. We have found that sometimes the doctors get a little carried away with “We can do it” instead of “Should we do it yet?” As Beth has grown, we have worked with her both with and without her prosthesis, so that she might develop a strong sense of whether she needs it or not for each task.

Beth has discovered that her prosthesis is a good “tool.” As such she uses it when she feels she needs it and leaves it off when she does not. Some of those “uses” may sound superficial, but not for her. Beth uses it in some of her arts and crafts activities. She finds it easier to cut more precisely. It allows her some distance from her work (Her limb is AE and gets her face too close sometimes.). She has developed an interest in crochet ever since her grandma’s last visit. Her prosthesis allows her a better place to wrap the yarn. She is taking up tap dancing, and without her prosthesis she cannot get far enough away from the barre to do the stretches on the left side. In some sports Beth finds the prosthesis comes in handy… like basketball where she can balance the ball against the prosthesis away from her body and shoot. And sometimes her prosthesis gives her a feeling of fitting in. This can be important to a 6-year-old who has just moved to a new town and a new school and, as of yet, knows no one her age.

Now at other times, Beth prefers to go without her prosthesis, a choice that is perhaps easier for an upper limb amputee than for a lower limb amputee. She has a sense of feeling in her limb – her prosthesis obviously does not. She has no use for it in some of her sports and play and does not need to be encumbered by it at that time. During the summer, she usually goes without, as the prosthesis is hot and, therefore, uncomfortable.

In other words, it all depends on the time, place, and need. Beth, as she gets older, may find more or fewer uses for her prosthesis, but the point is it has a purpose in Beth’s life. It meets her needs at times and is the appropriate tool for some jobs.

My husband and I know that this is a highly personal decision for each family and each child. The length of the limb, above or below elbow, the ease of accessing a prosthesis … all of these play an important role in deciding whether to use a prosthesis or not. We decided that it was a good decision for Beth. We have not forced her to wear it – we have encouraged her to find the “best” way for her – to try both ways and to see what works. Sometimes it is with, and sometimes without. In all cases, we feel we are providing our daughter with the information and the expertise to make informed decisions about what is best for her in her life. This tool is just one choice she has.

And from our perspective, that’s the best we can do – provide our children with the information and guidance to make informed choices for themselves and their lives.