Saratoga News

Photograph by George Sakkestad

Seven-year-old Morgan Juran was recently fitted for a myoelectric arm at the Myoelectric Limb Bank.

Hand-Me-Downs

Thanks to Rotary Club's Inner Circle, youngsters can trade in outgrown prosthetic limbs

By Sandy Sims

Seven-year-old Morgan Juran plays Shubert and other classical composers on the piano better than most 12-year-olds. "She's gifted," Marina Minelli, her piano teacher, says. "She could be the next Beethoven." And she does it all with just one hand.

Morgan was adopted by Debbie Juran seven years ago as a beautiful new baby who had been born without her left forearm.

At one month old, Morgan was fitted with a passive prosthesis, a lower arm and hand that looked like it belonged to a doll. This was not so much for cosmetic purposes as to get her used to wearing a prosthesis. She could use it for balance and for crawling. The usual practice with a baby prosthesis is to add weight to it over time. Then when it's time for a working prosthesis, the child is used to the weight.

At 9 months, when Morgan needed a bigger arm, they had difficulty fitting her. "So we bagged it," Debbie says. Her instincts told her that Morgan needed to become physically strong on her own steam, do kid things like swing on the monkey bars and climb trees. Debbie was concerned that using a prosthesis at such a young age would interfere with Morgan's freedom of movement as a child.

But there comes a time when the prosthesis makes a big difference. At age 5, with kindergarten looming, Debbie thought it was time.

Nowadays, Debbie says to her daughter, "Go get your arm, put the battery in, put the arm on and go play." She says it as casually as if she's telling her daughter to put on a jacket.

This casual tone belies the skill, training, and instinct it takes for a child to use a prosthesis. Morgan's experience is a good illustration of what it takes.

She's just received a new arm from the Myoelectric Limb Bank. However, children like Morgan who use prostheses have a problem. Their bodies keep growing, and they need a new limb every 18 months or so.

When a member of the Inner Wheel (an international organization for spouses of Rotarians) saw a friend's child outgrow her prosthesis, she came up with the idea for a limb bank--a kind of hand-me-down prostheses closet. Youngsters could turn in their outgrown limb and exchange it for a bigger one.

The idea came to fruition in 1994 at the Lucile Salter Packard Children's Health Services Rehabilitation Technology, Therapy and Treatment Center (RTTC) as the Myoelectric Limb Bank. Though the cost for a replacement limb has been almost halved, it's still about $5,000 to rebuild the socket for the child's new arm. That's where the Inner Wheel comes in. The organization pays completely or partially for the makeover, depending on the resources of the child.

On Sept. 14, the Saratoga Chapter is sponsoring an all-day golf tournament at Pasatiempo Golf Club in Santa Cruz to benefit the Myoelectric Limb Bank.

Saratoga Inner Wheel member Fran Miller is so enthusiastic about the limb bank that she recently drove to the Santa Clara Police Department to tell them about the bank after she'd read about a 3-year-old boy who lost his left leg when his mother threw herself and him under a train. Eventually, the boy may well utilize the bank. For now, he needs to heal.

Morgan began her journey with a working prosthesis when she was 5 with a body-controlled prosthesis called a Capp. It had shoulder straps that Morgan manipulated by moving her shoulder. The straps then pulled a lever that opened and closed the small terminal device that was to be her second hand. "Morgan caught on immediately," occupational therapist Britt Bell says. "She grabbed for her mother's nose."

The Capp works well but it's "butt-ugly," Debbie says. "It looks like the head of a Tyrannosaurus Rex. So we immediately named it Rex." Rex became more than a prosthesis to Morgan. He became a companion. It took time and persistence for Morgan to learn to use Rex. "I religiously took her to OT twice a week, and I worked with her," Debbie says. To encourage her daughter, Debbie said things like, "Rex is strong and has a big big heart. Why don't you let him help you brush your teeth?"

The next hurdle for Morgan was dealing with the children at kindergarten. Debbie encouraged Morgan to make Rex her subject for show-and-tell, something that is recommended by RTTC. Dennis Swigert, certified prosthetist and orthodicist (CPO) at RTTC, says children need to have their curiosity satisfied. Show-and-tell helps demystify the prosthesis. Turns out it made Morgan special. The children at her Salinas school were so taken with Rex that they all wanted one of their own.

"That device never was about Morgan," Debbie says. Rex was a very special, separate being. Morgan and Rex were partners. Papers came home from school with the names Mojo (Morgan's nickname) and Rex. Teachers sent notes home to the parents of Mojo and Rex. Morgan even put Rex to bed at night in a doll's cradle.

When Morgan learned to play the piano, Rex only helped with a note once in a while. She learned to play everything with the long fingers of her right hand. Her new first-stage myoelectric arm will have about the same capability as a Capp, but there are some nice differences: it's self-contained; there's no harness because it fits over the elbow in such a way as to stay on but allow her elbow to bend easily; it's easier to use; it's less restrictive; and it looks like a regular arm and hand. Whereas Morgan always wore a T-shirt to cover up Rex' shoulder straps, she now wears her pretty sun dresses. There's nothing to hide.

When Morgan gave up Rex, she grieved. She doesn't have the same feeling for "Mister" as she did for Rex. Mister is more like an arm and hand.

Not only is the child's adjustment to the prosthesis a long process, but so is the creation of the limb. A myoelectric hand operates differently than a body-powered hand. Instead of moving her shoulder to make the hand work, Morgan flexes specific muscles in her arm, a movement undetected by others. Little sensors are built into the socket of the prosthesis so they lie strategically over certain muscles--nothing piercing her skin, nothing invasive.

Contracting these muscles gives off microvolts that activate the sensor's minute circuitry. That switches on the system in the prosthesis that opens and closes the hand. Positioning the sensors on just the right spot over the muscles takes some very careful fitting. Placing of the sensors correctly in the socket is about a 10- to 15-phase process and takes five weeks or so.

Learning to use the myoelectric device is a little different for amputees than for children who are born without a limb. That's because amputees can use their memory of flexing their hand up or down to contract specific muscles in their arm and open or close the device. The limb-deficient child learns to use those same muscles by doing a side-by-side, Swigert explains. They move their "sound" hand so they can see how to flex the muscles on the deficient side.

RTTC also uses toys and games to refine this skill. Therapists have used the video game Pong; instead of the joystick, the child flexes muscles to make the game work. Some children need a combination body-operated and myoelectric device.

When Morgan is about 13 years old, she will receive a young woman's hand, which has a more sensitive pressure gauge. She will be able to flex her muscle harder or softer to regulate the amount of pressure she uses. Eventually, she will be able to rotate the wrist.

"Sometimes I get a job to do and come back here [to the workbench] and wonder how I'm going to do that one," says Scott Wimberley, orthotic and prosthetic technician. Each limb must be intimately fitted to the child both in the way the socket fits the stump and according to the activity of each child. For example, one little-leaguer has had his terminal unit adapted so it can hold a baseball mitt. Sometimes the child has suffered burns and has exposed nerves that must be shielded.

"It's a freaky kind of art," Wimberley says.

The lab at RTTC is a strange gallery with racks of legs, arms and hands of all sizes, including lifelike baby hands. There's even a barrel of different models and sizes of feet. The object is to duplicate the human body as much as possible. For example, they now use silicon padding inside the sockets of leg prostheses to protect the stump, a kind of re-creation of the natural padding on feet.

Most new inventions come from people who have these amputations or limb deficiencies themselves. One man was working with a high- tech metal that he accidentally dropped on the floor. When he saw it bounce, he decided it would work well for his prosthetic foot. This is the same flex-foot used by a man who climbed Mount Everest. An engineer father build a high-tech knee for his son. A San Jose man who lost his arm via a bandsaw invented the traditional wrist terminal in 1920. He created it Silicon Valley-style--in his garage. Wimberley, who has made this work his profession, wears a prosthesis for his left leg.

High-tech limbs have become cool these days, and athletes like to show them off. They leave off the cosmetic covering and let the hard metal system show. Sometimes they become sponsors of the technology.

Myoelectric technology so far has been used for hands, wrists and elbows because their needs--grasping and releasing--are more intricate. Leg movement isn't as refined, so the new technology for legs
has more to do with weight bearing, hydraulics, gait, and speed. However, the technology for prostheses is continually affected by our high-tech world.

British inventors have now added the shoulder to myoelectrics, and Stanford recently unveiled robotic technologies that include the building of artificial muscles, something they believe will transfer to prosthetics.

Morgan may someday have a prosthesis that will give her a hand with the piano, and that may not be so far away.

In the meantime, the Inner Wheel opened another limb bank in Connecticut last December and is working on another one in the Southeastern part of the U.S.

Fran Miller explains that they are trying to make these limb banks accessible to different regions because the cost of travel is another problem for families. Limb banks need to be located in universities that have the expertise to work with the high- tech devices.

A Day At Pasatiempo

Proceeds from this year's golf tournament at Pasatiempo will be distributed to the limb banks. There are still openings for the Pasatiempo tourney. In addition to the $250 package that includes green fees, box lunch, dinner at the Hollins House and golf lesson, other options include $50 for dinner only; $75 for a golf clinic and dinner; $125 for golf clinic/box lunch/putting green & driving range/dinner. For information call Fran Miller at 867-1241 or Jim Miller, a golf instructor at Stanford, at 650/725-3483.

[ Back to Contents Page | Saratoga News Home Page | Archives ]