By: Alan F. Leingang
On a Friday the 13th in 1988, our youngest son, Kurt, was born, and we first learned the meaning of limb-deficient. Ironically, as an electrical engineer, I had just completed a project working on a robotic hand. Despite this experience, my son's missing right hand and forearm hurled my family into a new world.
My son's condition, seldom discussed or even seen by pediatricians, obstetricians or other parents, overwhelmed us. Months passed before we met anyone, who could relate to how we felt or give us any good advice on how to approach our new challenge. One day, purely by chance, we read a magazine article about a small boy using a wonderful life-like hand. This article provided our first ray of hope for a functional and appealing prosthesis. Four months later Kurt was fitted with a myoelectric hand, and it was with great joy we watched him hold on to his swing with two hands.
The Right Match
My wife and I were determined from the outset to find the "best" specialist to work with us as Kurt's needs changed. This "expert" had to be willing to work with us as parents and accept our input. He also had to be willing to present all of the options available for our son, even those options he might not be equipped to provide. We discovered that choosing a prosthetist is just as important as - but more difficult than selecting a pediatrician.
Since Kurt has needed three new sockets, since the original myo was fitted two years ago, a good working relationship with the prosthetist has been essential. When problems arise, and they will, you must be able to work them out together. For example, each time Kurt gets a new socket; it might take the prosthetist several tries to obtain the proper fit.
Working with a nonverbal infant or a wiggly toddler requires a special commitment and expertise on the part of the prosthetist. At this time, fitting orthotic and prosthetic devices is an imperfect process, constantly evolving and improving for the sake of our difficult but precious little ones.
An Early Fitting
Despite the lack of supporting research, and without the availability of a local prosthetist, we decided to have Kurt fitted with a myoelectric hand at the age of 13 months. That turned out to be the best decision we've ever made. He is growing up with a functional hand, and it has truly become part of his body image. To our surprise and delight, he could operate his new hand immediately and spontaneously began a series of experiments to discover what the hand could do for him.
The three weeks of daily therapy Kurt received, when he got his first myo, proved to be an invaluable experience for all of us. We learned with our son and continued to prod him gently for months to "open"; or "use both hands" and not give up. We insisted he wear his prosthesis every day, and we fit it into our daily family routine. Soon he was clanging the cymbals with both hands during music time. He continues to learn through experience and practice, the usefulness of his great tool. Now Kurt asks for his myo so he can swing his bat with both hands like big brother, hold a pail and shovel, or open a Band-Aid. He seeks us out in the early morning hours and requests that we insert the new battery, so he can put his arm on and hold both sword and shield! The early struggles of putting the arm on our infant son seem minimal now, as we observe him eagerly putting his myo on himself; we help only by providing a dab of lotion.
The huge expense of Kurt's prosthesis was an obstacle we were determined to overcome from the beginning. Our motivation was the gut-level feeling that Kurt needed to be comfortable wearing a prosthesis today, so he'd be better prepared to use tomorrow's new technology. We hoped for insurance coverage, but knew that even if we had to make monthly payments, it would be worth the sacrifice.
Fortunately for many children, more and more insurance companies are picking up the cost of prostheses, including myoelectrics. Our current insurance company, however, provides only one prosthesis in a person's lifetime. This is totally unrealistic and does not take into consideration the fact that children grow. In the meantime, we are working hard at creative fund-raising and using available community resources to help pay our son's prosthetic expenses.
Supporting Each Other
We now realize our initial pain and bewilderment at seeing Kurt's empty sleeve has been felt by thousands of other families. Valuable support groups around the country assist families and their limb-deficient children. These groups supply badly needed strength, comfort and information. We have found these support groups to be an important resource in Kurt's growth as well as our own. It is our goal to reduce the amount of fear, confusion and frustration future families will experience.
As the medical community becomes more educated, a national network of support groups become more effective and the functionality of children's prosthetics improves, our children's futures will become brighter. Every child has the right to the medical technology that Kurt has been privileged to enjoy. We need to make this dream come true for all children and their parents. We all want our children to have access to the best education and to prosthetic tools that will give them every chance to excel in life.
Today's myoelectric hands certainly have room for improvement. But by fitting children, valuable experience is being obtained that is leading to workable solutions such as more flexible sockets, on-board batteries and soft skin-like coverings.
However, there is still a great need for more reliable, cost-effective prostheses for children. An adaptable socket used during the rapid growth stages would reduce the number of socket changes and resulting costs and frustrations. Effective sealing of electronic and mechanical parts would keep out moisture and dirt, thus preventing unnecessary limitations and downtime. More durable and flexible gloves are needed also. The addition of myoelectric hands with flexible outer shells would increase the child's gripping capability as well as reduce wear and tear on the gloves.
We are counting on the university community to invest time and talent into the future of prosthetics. The children of today will be the more advanced prosthesis wearers of tomorrow. Major universities could change the face of prosthetics, if they choose to become the leaders in research and generate the data and developments that are so badly needed.
These past three years have been filled with valuable discoveries in addition to wasted energies. Armed with these experiences, as parents we will continue to push for the latest technology. As an engineer, I am committed to bringing tangible developments to prosthetics to benefit all users.
We remain confident that our son will continue to incorporate his prosthesis into his active world. His progress in mastering his myoelectric hand has been astonishing. Today, Kurt continues to eagerly reach out, grabbing life with both hands.
Alan F. Leingang
Senior Staff Engineer
27061 Springwood Circle
Lake Forest, CA 92630
This article was originally published in the JOURNAL OF PROSTHETICS AND ORTHOTICS, the official publication of the American Academy of Orthotists and Prosthetists and the American Orthotic and Prosthetic Association. Used with permission.