Tiny Miracles : For a Growing Number of Infants and Their Parents, One Small Clinic Has Become the Gateway to a Normal Life

Four months ago, Sammy Napoleone was born with a blunt remnant for a right arm.

Last week, he was given a new one.

“Ten toes and 10 fingers . . . what every parent wants to see,” said his mother, Diane Napoleone of Santa Barbara. Earlier that morning, she had cried at the sight of her son waving two arms and two hands for the first time in his life. Now her mood was released, soaring. “He is complete. It is like a rebirth . . . and I’m feeling what I wanted to feel when he was born.”

Sammy was feeling more practical things. A therapist was teasing his attention with rattle rings. He could have swatted them with his sound arm. But he chose a roundhouse right with his new, pink, polyvinyl hand.

And with that tiny victory, Diane and husband, Paul Napoleone, accepted that one day--thanks to a small clinic here, thanks to its team staunchly defying medical reluctance to fit space-age prostheses to infants--their Sammy will grow as a two-handed lad able to skim a Frisbee, open a tube of Life Savers with the string, and pin a corsage with his artificial grip.

Almost as important, his false hand, as an adolescent and an adult, will be crafted indistinguishable from true. If freckles grow on the natural hand, matching spots will be air-brushed on Sammy’s substitute hand. It will have fingernails, veins, hair, cuticles and, should he choose, a dragon tattoo.

An Intermediate Step

For the time being, however, Sammy will be training on a “passive” arm. It’s an inanimate limb fitted to his below-elbow stump by suction. He will wear it for three months to accept the weight, balance, purpose and purchase of a second upper limb.

But even a passive comes with a pudgy palm and tiny fingers with a suggestion of nails. It is flesh-colored, lifelike. It was certainly enough to fascinate the Napoleones who played on a clinic floor with their son, prodded his new hand, wiggled its fingers and spoke of family completeness.

Four months of blackness and uncertainty, noted Diane, 31, had ended. Paul Napoleone, 37, an oil platform worker for Unocal, said that he will no longer imagine his son as a one-armed fisherman. Or a one-armed golfer. Or a one-armed anything.

“There’s nothing going to stop him now,” he said. “The world is his and he can go out and grab it.”

With both hands.

The root of Sammy’s promised dexterity--and a relief for any parent or amputee who ever cringed from the medievalism of hooks and claws--is myoelectrics, the electrical movement of mechanical fingers and joints by muscles that survived amputation of the limb. Myoelectric prostheses became commercially available in Vienna more than two decades ago.

Radically new, however, is this attachment of myoelectric arms to babies--and months before they can walk, talk, express a preference, crawl or even need fingers.

“But whether it’s a child born with a limb loss, or an adult who has undergone an amputation, it only takes 30 days to adjust to one-handed functioning,” Tom Haslam said. He’s the 41-year-old owner-president of Medical Center Prosthetics here. Haslam also founded the Myoelectric Institute of America in the same building and is the nation’s noisiest lobbyist and overlord of myoelectric limbs for tots. “Under 6 months . . . even 8 weeks is not too soon. The ideal is to have infants two-handed when they are progressing through the development stages, sitting, crawling, reaching for things.”

A Growing Specialty

It’s an ideal whose time, apparently, has come.

“Three years ago the average age of my (prostheses) patients was 67 years,” Haslam explained. “Now this place is a pediatric center.”

In the past 18 months, Haslam and his team of two dozen technicians and rehabilitation specialists have fitted myoelectric arms on 94 patients. Ninety were children.

Yet those are only numbers. The institute prefers to measure progress by its physical and emotional mending of children and parents.

“When I look at Alexis’ new arm I am reminded again that she is different,” said Patty Engleman of Peekskill, N.Y. Her daughter has worn a myoelectric prosthesis for most of her 5 1/2 months. “But you also know that this time she is starting to be a normal little girl and people aren’t going to look at her and see a freak.

“The (myoelectric) arm takes away the difference.”

Map pins and patient names on a chart of the United States show the breadth of this family. Most states are tagged and respond to Houston control, because the Myoelectric Institute is the only facility in the country offering such prostheses to infants.

A support group, Limbs of Love, has formed among parents.

John Combs, a Houston advertising and marketing executive, chairs the organization. Jodie, his wife, assists. They are disciples because their son, Drew, was born without an arm, has been fitted with a myoelectric prosthesis and now lives the full life of all 3-year-old hellions.

Getting the Word Out

Combs says that Limbs of Love is pitching to educate a nation:

--That myoelectric prostheses for infants are a working, proven option to body-powered hooks and CAPP (Child Amputee Prosthetic Project) devices that look like lobster claws.

--That traditional prostheses represent a horse and buggy technology, also a stigma hindering a child’s social acceptance and psyche.

Or as Jamie Perrone, 23, a technician at the institute, said of benefits of his myoelectric arm. “I’ve stopped getting those double glances. I don’t feel like the elephant man anymore.”

Added Haslam, 41, a certified prosthetist for two decades and son of an orthopedic surgeon: “Quite simply, we live in a two-handed society, not a hook-hand society.”

Then why an apparent blind spot among physicians?

“Small numbers is part of it,” suggested Rosa Jacobs, a co-founder of the institute and now its director of rehabilitation. “The estimate is that in the United States, 2,500 infants are born every year without an arm or part of an arm. That’s one per state per day, not a lot to excite people.”

A More Bitter View

Haslam speaks another reason why experts in physical medicine have been slow to accept myoelectrics for infants.

“Stupidity,” he storms. “And that’s worse than being uneducated.” His mood and his words, he knows, will anger most physicians. But he shoves on. In the past, he said, the medical attitude has been that “it was simple to fit a kid with a hook. If the kid used it, fine. If he threw it away, too bad.”

That philosophy, he said, also stated that the child who accepted a hook could later be given a myoelectric hand. But the child who had rejected the hook, would not be considered a suitable candidate for an expensive electric arm.

The visual menace of the hook, Haslam continued, isn’t the only reason for its rejection by young wearers. Most are attached to uncomfortable shoulder harnesses. Claws are opened by twisting backs and shoulders and such contortions can embarrass a child.

Perrone hid his hook in a closet for 15 years. Rather than see her child with a hook, one mother removed an arm from a doll and stitched it inside her daughter’s empty sleeve.

“Usually, the first thing they (children) encounter is that parents don’t even like hooks,” Haslam added. “For them it’s a reminder, a sign of their incomplete kid.”

All his arguments, the pain he tries to prevent, comes together when Haslam first faces a family and their limb-deficient child--as he faced the Napoleones and Sammy last week.

“First of all, I know what you all want but I can’t give it to you,” Haslam said. He is wearing a polo shirt and the consultation room could have been in a motel somewhere; that’s the unclinical feel Haslam likes to cultivate. “You want a right hand for Sammy that will work like his left hand.

“We’re not at that stage yet.

“But we can do the next best thing. . . .”

The next best thing starts in a row of steel parts drawers. They contain tiny arms and hands. Lefts and rights. Infant arms and toddler hands in fleshtone. It is like a doll factory.

These are stored passives. They are catalogued by length and size of grip. It is like selecting a tennis racquet.

To craft the initial prosthetic, Haslam builds a plaster mold of a child’s stump. An acrylic cup is formed around the mold. The passive is attached to the cup, the cup is fitted over the stump--and a child is one step closer to sucking two thumbs.

The magic of myoelectrics starts in other drawers.

They hold small hands that, when activated electrically, squeeze into baby fists. Only the first two fingers and thumb open and close. The pinkie and fourth finger are soft, rubbery but left unmechanized.

Thumb and finger movement is created by a battery-powered relay switch mounted inside a hollow, plastic forearm. Arm and hand are attached to the fitted socket. Inside that socket, flush against the remaining muscles of the remnant arm, is an electrode.

Here, through his electronics, man has approximated the stimulus and sequence of physiological movement.

The Electrical Workings

An action, by child or adult, is decided. A brain signal orders a remnant bicep or tricep to function. The muscle tenses and emits microvolts of electricity.

At this point, prosthetic technology takes over.

The electrode in the socket cup reads the muscle’s electricity. It amplifies the impulse through a standard 6-volt battery that in turn triggers the relay switch. And its signal opens or closes the myoelectric fingers.

It is not a miracle of miniaturization or sophisticated functions. A myoelectric arm is not shower, pool or ocean proof. If it breaks, it cannot be fixed or replaced at your corner appliance repair store.

Although covered by most health insurance policies, the average cost of a below-elbow myoelectric arm, plus a passive arm, fitting of both, four weeks of physical therapy and family expenses while in Houston, is $20,000.

Hand-Me-Down Limbs

Arms wear out. Children grow. Despite recent opening of the institute’s limb bank for hand-me-down arms, a lifetime of myoelectric arms could cost in excess of $300,000.

This shortfall has not been lost on more cautious physicians--among them, Dr. Yoshio Setoguchi, director of the Child Amputee Prosthetics Project (builders of the CAPP arm) at UCLA.

Setoguchi says he always informs parents that myoelectric prostheses are available for their infants. But, he explained, his recommendation is for a passive prosthesis at “6 to 8 months,” a body-powered hook or CAPP “at 2 years . . . and a myoelectric arm between 3 and 6 years.”

Setoguchi says he does not oppose Haslam. But before embracing myoelectrics, he urges, there should be deeper clinical research into the presumed psychological benefits to children.

“At the moment, all the research we’re hearing is anecdotal,” he said. “This is a new approach to fitting children. It may have value. It may have validity. But like other things in medicine, you don’t jump onto the bandwagon until you know all the effects and how beneficial it is.”

Haslam does not shy from such critiques.

“Yes, a myoelectric arm is expensive,” he said. “They’re the price of a small car. Some prostheses, up to a shoulder disarticulation, or replacing and shoulder and an elbow, will cost between $35,000 and $45,000.

“But what is your arm worth? What would you give someone not to cut your arm off?”

The mechanical reliability of his arms, however, seems to be much better than that of any small car.

“The average down time for an arm is approximately one to two days a year,” he said. “Most arms sent to our office for repair, sit here for four hours and are mailed right back.”

Formal surveys and research, Haslam acknowledged, simply are not his suit. He prefers to monitor progress by maintaining contact with each myoelectric family. And from these contacts (“they send us pictures and if we don’t hear from a family, we’ll call”) he says his infant myoelectric success rate is 100%.

If there is an ideal, he continued, it is Adam Piner, 9, of Salt Lake City. Haslam replaced Adam’s hook with a myoelectric arm in 1983. He reports the achievement by showing two Polaroid snapshots and a newspaper clipping.

“Here he is in his hook,” Haslam said. Then the second Polaroid. “Here he is with the myoelectric hand, getting dressed in a three-piece suit he always wanted but would never wear with the hook. Here he is today.”

The clipping showed an action photograph of Adam.

He is crouching, competing--and winning a U.S. Karate Federation national championship for his age group.

Those moments of seeing their children born incomplete, this knowing the collapse of their dreams, will never go away.

“I was screaming bloody murder,” remembers Diane Napoleone of that October afternoon in the delivery room at Cottage Hospital in Santa Barbara. “I saw Sam born, I saw he only had one arm and screamed: ‘What is wrong with him?’

“I was devastated. I didn’t want to hold him, but I never want him to know that. I felt an overwhelming sense of guilt that I had done something. . . .”

Kathryn and Bill Ynclan knew their son would be an outdoorsmen. He might even be a cowboy. So they’d name him Shane. Or Cody. On Dec. 22 at Sutter Memorial Hospital in Sacramento, Shane was born without a right arm.

“I had a Caesarean section because he (Shane) was breach,” recalled Kathryn Ynclan, 31, now a part-time physical education teacher at Cal State Long Beach. “When they were taking him out, I heard the doctor say: ‘We have an arm problem here.’

“He said it again. He said: ‘He’s missing part of his arm.’ Then the tears came. . . .”

It is no less an agony for the fathers.

“I was in the delivery room and I saw it before my wife knew,” said Wendall Horne, an attorney from Macon, Ga. His son, Oliver, was born minus his left arm below the elbow. “The first thing that went through my mind was: ‘Is there something else wrong?’ Like a mental problem? Then I started thinking. Will he be able to fish and bait a hook? I started thinking about sports he could play with one arm. . . . “

From amniocentesis tests, the Napoleones knew their child would be a son. So Paul Napoleone set an agenda he had never enjoyed with his own dad. This father and son, he promised, would play baseball together, golf, maybe spar around and certainly raise a mighty relationship.

“Then he was born and I saw just the one arm,” Napoleone said. “I tried to look around him to see if it was behind his back. It wasn’t there. I’d quit smoking five months earlier. I went outside, bought a pack of cigarettes and smoked my brains out.

“Then I sat down, cried, and prayed to God to get us through this thing.”

Hooks Are Recommended

For these parents, there were quick and common denominators. Doctors told them there was no clear reason for the limb deficiencies beyond congenital malformation, possibly a restriction by uterine tissue. All were informed by prosthetic specialists that myoelectrics were a later option--but for an infant, hooks were the wisest choice.

“For the first three months, Oliver wore his hook for only two or three weeks,” Horne related. “It kept coming off. He kept taking it off and throwing it down.”

Kathryn Ynclan, 31, didn’t even consider a hook.

“No son of mine was going to get a hook,” she said. “It’s just too barbaric. I discussed it with Bill and said: ‘This is not acceptable.’ He accepted how I felt about it and so I took the bull by the horns.”

From a sister, an occupational therapist in Santa Cruz, Ynclan received some professional papers. Her mother-in-law in Arizona contributed a newspaper story about a child fitted with a myoelectric arm. Finally, Ynclan called Houston.

“They said if I wanted to fly out the next day, they’d fit me in,” she said. “I felt such relief. Shane was finally going to get something . . . and down the road he would have five fingers on each hand, not five fingers and a hook.”

She did not know if the myoelectric arm would be covered by insurance. She did not care. “All that mattered was that Shane would be getting a prosthesis that was functional and pleasing to the eye.”

And so they all came to Houston. To a place where walls are covered by photographs of former patients and the promise of what will be for others: serving tea and jelly beans at a doll’s party, fingering a cello, cutting a wiener with a knife and fork. To a worn, single-story building on Almeda Road where some might smile at its commercial neighbor--an automotive body shop.

The Myoelectric Institute of America is a medical facility that looks and sounds more like a day nursery. Smoking is even allowed in back rooms. Says Haslam: “I feel that the people who come to see me have enough problems without putting them in a clinical atmosphere.”

Last week was a full house.

Sammy Napoleone had sat placidly through his fitting for a passive arm and preliminary tests to measure the electrical output of his stump muscles.

Krystina Kityrinos, 2, of Rochester, N.Y., born without a right shoulder or arm and with only a two-fingered flipper for a left arm, was flexing her myoelectrics. She grabbed an offered thumb with a grip like a pair of pliers. Krystina giggled.

Oliver Horne was benefitting from the senior wisdom and reasoning of every month of his three years and was going for a double header--a first-day fitting for both his passive and myoelectric arms.

Then there was training, a return to post-natal basics when a child instinctively learned that this muscular action produced that reaction with limb or appendage.

Tonka Therapy

Only in Oliver’s case, an electrode attached to his stump was joined to a circuit controlling a Tonka dune buggy.

Oliver tensed a tricep. The buggy growled forward. Oliver relaxed. The buggy stopped. Piece of cake.

“He doesn’t need to know why something works, only what happens when he does something with a particular muscle,” therapist Beth Gobencion said. Then to Oliver. “OK, let’s try something else.”

The truck was replaced by a myoelectric hand. Oliver held it in his good hand. Now, when he tensed his stump, the mechanical hand opened. When he relaxed, it closed.

“Bend your elbow. See, the hand is open. Now relax. It’s closed. Good. Open the hand with the muscle. Now let it go. Make a muscle. Let it go. Good. Good.”

Within minutes, Oliver was picking up wooden beads between myoelectric fingers, threading them on a cord, making a necklace. Absolutely nothing to it.

Preview of Sammy’s Future

The Napoleones watched. Soon, sometime before summer, their Sammy will be taking identical training.

“I think about him growing up and how they’ll treat him in school,” Diane Napoleone said. “Kids can be really cruel, you know, and I still worry about that. But with a myo arm he’ll fit in a lot more . . . maybe he’ll even be held in awe for awhile.”

The Napoleones have taken their credit to its limit, borrowed money from parents and accepted a frequent flyer airline ticket from a friend to get this far.

They are encouraged by what they have seen. They have been told of a robotic hand being developed for NASA. It has four-finger dexterity. It is voice activated, can catch a baseball and control the squeeze of its handshake. Eventually, the electromechanical hand should be able to sense the hot and cold of a coffee mug.

But for the time being, Paul and Diane Napoleone will settle for more prosaic wonders.

“I’ll enjoy just going into a grocery story and not having people stare at my child,” said Diane. “I want them to see a whole human being, not something they should shy away from.”

Said Paul: “I just want him to be able to grab me and give me a big hug.”