It is impossible to look at Shannon Smith and not be awed by her determination and courage.
She lost all four limbs - both arms and legs - from a devastating illness that almost killed her and did cause the death of her unborn child.
Now, she is learning to live again with the psychological aspects of her trauma and the array of sensors, motors and advanced materials in the prosthetics that allow her to move once more.
For her, each day is about achieving little victories over challenges that most of us take for granted. She is steadfast in her desire to once again accomplish the simplest tasks, from picking up a fork, to walking without assistance, to brushing her teeth.
Nothing is easy. Modern prosthetics can't replicate the look and complex function of real limbs - at least, not yet. But they are lighter, stronger and smarter than ever before.
"I want to be as independent as I can be, and it's cool every time I get to a new stage," Smith said during a recent visit to East Coast Orthotic and Prosthetic Corp. in Buffalo, which is making her new limbs. "It's not so much frustration I feel as it is impatience."
Smith, 29, went to Bennett High School and Erie Community College. In 2006, she moved with a friend to Las Vegas, where she graduated from Kaplan College vocational school and went to work as a pharmacy technician.
"We were going to Miami or Las Vegas, so we did eeny, meeny, miney, moe, and Las Vegas it was," Smith said.
She was six months pregnant with her second child - she has a 3-year-old son, Oliver - in December 2010 when she became ill and was hospitalized with pneumonia. Doctors performed an emergency C-section but the premature baby did not survive.
Smith, meanwhile, developed sepsis, a severe response to an infection, that worsened into septic shock, and she slipped into a coma.
Her condition declined further with a life-threatening complication known as disseminated intravascular coagulation, which results in loss of blood circulation, and kidney and liver failure. She awoke after three weeks on life support to find that surgeons had amputated major portions of her arms and legs.
Smith spent nine months recuperating in a Las Vegas hospital and then two months in Erie County Medical Center.
"I was a perfectly healthy person until this," she said.
An estimated 2 million Americans live with limb loss, 54 percent of the cases caused by complications of the blood system, often from diabetes, and 45 percent by traumatic accidents, according to the Amputee Coalition, an advocacy group. About 185,000 people in the United States lose limbs each year.
Amputees describe a grieving process that accompanies amputation. Patients can feel anger, depression and hopelessness. It's typical to worry about body image and loss of independence.
"Every day is a challenge on all fronts - emotional, psychological, physical. You need family and friends to help you," said Kevin Degnan, an amputee who founded Moving Forward, the amputee support group in Buffalo.
At East Coast, Smith greeted visitors with a huge smile and a positive attitude. If she experienced a grieving process, she said, it was brief. She is tenaciously trying to return to a normal life.
That's not to say Smith doesn't have tough moments. Who wouldn't, under the circumstances?
Trying to adjust
The beginning of her recovery, when she still lay in a hospital bed, proved particularly difficult.
"You need to have it just click in your mind that you won't be depressed," she said. "Prayer helps. So does my family support."
Smith now lives with her mother, Roxanne, who is retired and has the time to help care for her daughter. It took a while, but the family is adjusting.
"I can't do it myself. I attribute it to faith," Roxanne said. "Shannon also has a strong character."
Individuals confronted with limb loss make choices about prostheses based on cost, comfort, appearance and functionality. In this case, both Smith and her prosthetist also faced the extraordinary challenge of creating four new limbs, learning to use each one and then making them work together.
"These devices don't move by themselves. You tackle one limb at a time. You have to integrate them in the end. It's like an orchestra," said Christopher Berger, clinical director at East Coast.
Generally speaking, prosthetic devices consist of a custom-fitted socket that attaches to the remaining limb and an internal structure made of different materials and parts, depending on what a patient needs, wants and can afford.
Health insurance plans usually don't cover the full cost of prostheses, which can run into the tens of thousands of dollars for devices that contain high-tech materials, sensors, microprocessors, motors and batteries.
A new left leg
Berger began this spring by making Smith's left leg first, a simpler prosthetic for her below-the-knee amputation. It was composed of silicone and titanium sections attached to a carbon fiber foot. She learned to stand on it with the help of a platform walker, bear weight on the device and transfer herself from place to place, such as from a bed to a nearby chair.
"The socket is one of the most important things about a prosthesis," Berger said. "Everything else is meaningless if it doesn't fit and feel comfortable."
Smith said one of the hard parts of using a prosthetic is adapting to the weight of the device. They are far lighter than our natural limbs but feel heavy to the amputee. It's similar to the difference between gaining 20 pounds of weight, which can go unnoticed, and carrying 20 pounds, which requires exertion.
Berger and his staff then assembled the more-complex device for her above-the-knee amputation on the right leg. It contains a device known as a Rheo knee, a microprocessor-controlled prosthesis introduced in 2005 by Iceland-based Ossur.
The knee responds automatically to different walking styles and different terrain with sensors that monitor ground reaction forces and bending movements. Smith is learning to manipulate her gait and control those ground-reaction forces.
"It was hard at first, like walking on stilts," she said.
What's particularly helpful about the high-tech knee, said Smith, is that she has come to trust that it won't give out on her. She isn't as fearful of falling and can concentrate on walking.
As using the legs become more like second nature, Berger will add more functions, such as a reactive force that will allow Smith to sit in a controlled manner without falling back.
She has graduated to walking with the assistance of a platform crutch that cradles the forearm of the user. Her goal - and it will be a challenge - is to learn how to attach the new limbs herself and one day walk on the devices without assistance.
"A realistic goal is to be able to walk with a cane, but I would like to walk without it if I can," she said.
A major achievement
Berger is still awaiting parts so he can assemble a right arm for her. But Smith has been making progress with the left arm she has worn for about a month.
She recently learned to put it on by herself, a major achievement, because she'll need to be able to do that if she hopes to attach the right arm on her own.
Her arm prostheses do not rely on straps and harnesses as many such devices do. Instead, she has opted for more advanced devices that suspend from her remaining limbs from custom-made sockets that fit like a glove. They look more real, offer greater range of motion and can function with an attached myoelectric prosthetic hand.
The hand made by Germany-based Ottobock Healthcare uses electrodes to detect the electrical signals produced when a person flexes or contracts a muscle.
Smith can open and close the prosthetic hand to grasp a cup, for instance. She's also learning that she can't overthink a command, confusing the microprocessors as to whether she wants to flex or contract a muscle. As she gets more adept at using the arm and hand, Berger will increase the grip force, so Smith can pick up and hold heavier objects.
The hand makes two distinctive whirring sounds, one when the hand closes around an object and another when it opens. Amputees like Smith must learn to differentiate the sounds instead of constantly looking at the hand to visually check what it is doing.
"Sometimes I just fool around and close my eyes and listen. I have to be able to tell the difference," said Smith.
The motor sounds are a reminder that the limbs are machines.
They contain parts that wear out or that can break. They rely on lithium-ion batteries that must be recharged regularly like a cellphone. They also cost a lot.
Berger, who said his firm is helping with some expenses Smith's insurance does not cover, estimated the cost of the Rheo knee at about $35,000, the below-the-knee prosthetic at around $15,000, and the current below-the-elbow arm-hand device at $30,000. The final limb, a full arm with hand and elbow, will cost $60,000.
The family also has established a nonprofit fund to defray medical expenses.
Smith recalled that one of her initial reactions to the amputations was a fear that she would never go outside again. It turned out that she attended a wedding just a few days after her discharge from the hospital.
The experience gave her some confidence and insight into what was important to her.
"My goals change a lot," she said. "But right now I'd like to be able to take care of myself and my son. And, I'd just like to be able to hang out with friends."
