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Touching technology; Children's lives changed by unique electronic arm program

Five-year-old Annabelle Murphy of Sterling Heights, Mich., who was born without a left hand and forearm, doesn't consider her electronic arm anything out of the ordinary.

Sensors tucked inside her arm charge three fingers on her hand that let her pick up jelly beans and uncap magic markers.

She's learning to tie her shoelaces, no easy task for many kids her age. She can bat a ball and helps other kids open their fruit snacks if they have trouble tearing open the bag.

A unique program at Children's Hospital of Michigan provides the prosthetic arms and hands and therapy to children who are uninsured or whose insurance doesn't fully pay for the devices. It also maintains a limb bank used for replacement parts.

The Variety Myoelectric Center, based at the hospital's Novi outpatient rehabilitation center, is thought to be the only facility of its kind in North America. It has fitted more than 500 kids like Annabelle with electric-powered or myoelectric limbs, as they are called, since it opened in 1981.

The program has been funded since its inception by Variety, the Children's Charity of Detroit, which holds an annual fundraiser to raise money for the program.

"Without the help from Variety, we couldn't do this," said Dr. Edward Dabrowski, a pediatric rehabilitation medicine physician and medical director of the center.

The center was the idea of Milton London, a Variety Club supporter, and Dr. Lawrence Morawa, a Wayne State University orthopedic surgeon, who got the program running more than 30 years ago with the help of a three-generation Livonia family business called the Michigan Institute for Electronic Limb Development.

At the time, the institute was just beginning to develop the first myoelectric limbs for adults and kids. Prior to that, many children went without prosthesis or used a mechanical-type arm with a hook on the end or other cumbersome device controlled by a harness worn around the shoulders. Those devices were difficult for young children to master because many are still learning the physical and cognitive abilities required to make them work, said Carl Brenner, the artificial limb developer who has created all three of the arms at his Livonia business that Annabelle has used thus far.

Annabelle gets a new device about every year as her limbs grow, "just like a pair of shoes," said Michelle Murphy, her mother.

Even as recently as five years ago, Michelle and her husband, David Murphy, assistant principal at Grissom Middle School in the Warren Consolidated School District, were told by many doctors that technology for kids with upper limb defects like Annabelle's had not advanced enough to be worthwhile, she said. "They told us kids do compensate and adapt" with upper limb defects.

The Murphys refused to stop there and found a website describing the Variety Myoelectric Center. It rang a bell for Michelle because she had worked as a teen for a woman who had been president of the local group.

Michelle called her former boss, who made a call and the family got an appointment for Annabelle to be evaluated at the center.

"When she was 7 months old, she was fitted with a starter limb, which has no electronics. The idea is to see if a child uses the equipment and finds it helpful with daily tasks. The program typically fits children with an electric limb around 1 year of age," Dabrowski said.

"The earlier you fit them, the better," Dabrowski said.

The Murphys tried not to get their hopes up that Annabelle would like the device or that it would help her.

"There was a period where my husband and I had our fingers crossed," said Michelle, a former schoolteacher.

Jeff Kraus, the Myoelectric Center's physical therapist who has worked with Annabelle since she received her first device, prepared her for a myoelectric arm by helping her develop shoulder and arm strength. Michelle Murphy recalled how Kraus would sit on a mat with her daughter and blow bubbles that he encouraged Annabelle to pop as they floated over her head.

By 17 months, Annabelle was ready for her first myoelectric arm.

She put it on and "her face lit up," her mother said. "She was old enough to understand" that just by twitching muscles in the top of her arm she could get the electronic sensors to move the thumb and two opposing fingers, Murphy said. "It took her about three months to master it."

"She's a wonderful user of it," Kraus said during a recent therapy session with Annabelle. "It's amazing what she can do with it."

He spent the hour of therapy tossing balls with Annabelle, playing games like tug of war and using a cardboard rabbit with a shoelace to help teach her how to tie shoelaces.

When she relied on her right hand, Kraus asked gently: "What is your left hand doing? It can do more than that."

"I can't," Annabelle told him. Then, without a whimper, she focused her thoughts on getting her left arm to move. Just willing it to do so makes the muscles twitch, which triggers the batteries inside her artificial arm to move her thumb and fingers to pick up the shoelace to make a bunny loop.

She tied one bow, then another.

"Good job, Annabelle," Kraus said.

Annabelle beamed a big smile back.

The development of prosthetic devices for children with upper limb deformities has been slow, for several reasons. "Of 4 million live births in the United States, the best estimates we have from the Centers for Disease Control [and Prevention] is that no more than 300 children are born who are candidates for this technology," Brenner said of myoelectric devices.

Lower limb deformities also are more common, particularly in adults who incur them in accidents, so there has been less of a push for technology for children with upper arm defects, Dabrowski said.

Many doctors may never see a single child with an upper arm deformity, he said, so they may not know what technology is available.

Insurance reimbursement for the devices, which cost at least $24,000, also has deterred use of myoelectric devices, he said. Brenner and the Variety program have developed new protocols to assess whether a child will benefit from the technology. Kids get a test model and are followed to see if they find it helpful or a hindrance, Brenner said.

Brenner, Kraus and Dabrowski can envision the day when children will have a multimotored, multigrip hand capable of moving all five fingers. The technology now is limited to adults and can cost as much as $125,000, Brenner said. Children, like adults, also may want both conventional and new devices, depending on the task to be done, just the way a person may want an electric saw for one job and a manual one for something else, Brenner said.

Stacy Poole, 28, is a purchasing analyst for MGM Grand Detroit casino, who was born without a left hand. She got new limbs nearly every year throughout her childhood from the Variety Myoelectric Center. She grew up thinking she was no different than the other kids.

"I could participate in sports, dance classes and all the other things kids do," she said. She played coronet in her high school band, worked at McDonald's and played soccer.

Poole met Annabelle at the Variety club's annual picnic when the child had her myoelectric arm only for about four months. She "was a real inspiration to us," Michelle Murphy said. "Her confidence really struck me." Poole and the Murphys keep in touch by email.

Married six years with a 1-year-old son, Poole thanks the program for "making a huge difference in my life. There are a lot more things I couldn't have done without this. I am very blessed."