“You need to be confident in who you are,” Dayna said. “ And I can do anything that you can do.”
Dayna’s condition was a result of a congenital amputation, an incomplete development of the limb before birth. Congenital amputations of the upper limb are classified by where the child’s arm stopped growing. The most common amputations of the upper limb, are partial hand, wrist, mid-forearm ‘like Dayna’s’ and upper arm. Forearm and wrist amputations usually affect only one side and are more common on the left, as in Dayna’s case. Occupational therapy, which she began in elementary school helped her managed and become familiar with using her prosthesis.
“ I went [back] last year because my left shoulder, which is lighter, and is higher than my right,” Dayna said.
According to an online prosthetics journal, children who wear prostheses often suffer because the device is heavier than the biological limb. It is vital that therapeutic measures provide a close balance between both upper limbs. Children’s prostheses must be maintained and checked regularly to accommodate growth.
Young patients like Dayna are often involved in many activities. In addition to the standard artificial limb for everyday use, many child amputees or congenital patients have special limbs and devices to help them participate in specific and recreational activities.Since she was 8 months old, Dayna has had a prosthesis. As she grew, she was refitted every year. Dayna eventually stopped wearing her prosthesis at the age of five, wearing it occasionally to show her friends at school and for occupational therapy. But at a young age, Dayna had already begun testing the waters with physical activities.
“As all the other children were doing, I had her in swim lessons since she was eight months,” Donna Troisi said, Dayna’s mother. “Some people thought she wouldn’t be able to do that, but she was the best one, the best baby in the group.”
Congenital amputations are generally a result of bleeding or blood clots in the hand or arm as it is developing before birth. According to the Association of Children’s Prosthetic-Orthotic Clinics, one in 20,000 children are born with a congenital forearm amputation. One in 27,000 children is born with a congenital arm amputation. This condition is rarely related to any other medical problem and is not inherited.
The field of upper-limb prosthetics has become increasingly specialized in the last 10years. These years were spent researching and developing a prosthesis that could serve closest to a biological limb without hardship. Lower-limb applications including myoelectric, body-powered, or hybrid, were used to be energy efficient and preserve motion. Even the “Luke Arm”, named after Star Wars character Luke Skywalker has served as the ultimate bionic prosthesis that almost duplicated a biological limb.
At the same time, most professionals who make and fit prosthesis see few individuals with upper-limb deficiencies; typically one upper-limb client per year compared with about 30 clients with lower-limb deficiencies. Martin H. Mandelbaum, who owns a prosthetic company in Port Jefferson, has been Dayna’s prosthetics practitioner since she was 2.
“As they[children] progress and get older we put in more control methods,” Mandelbaum said. “And we usually use myoelectric controls.”
In particular, Myoelectric arms and hands have been specially designed for infants and children to have a realistic appearance. In the absence of a hand or arm, the child's brain continues sending signals to grasp or open the missing hand. Myoelectric sensors can read signals through the skin and, without surgery; a computer chip will magnify these signals and operate the prosthetic.
Specialized prostheses were developed for Dayna’s various activities: one for dancing is lightweight and enables her to move quickly to the music. And one prosthesis for playing music allowed her to play the clarinet. For swimming, Dayna was also involved in the New York State Physically challenged Olympic games from age 6 to 12 and won four gold medals. And her prosthesis for gymnastics, enabled the hand portion of the prosthesis to bend for flips.
“The gymnastics prosthetic helped for a while,” Dayna said. “I could do stunts in cheerleading and it was the most helpful one I ever got.”
Dayna, an only child, was raised by parents who encouraged her independence. She was taught to ask for help when needed but spent the majority of her time learning to do everything on her own. Although some parents may think it is necessary to have their children wear their prosthetics for social reasons, Dayna is committed to be involved in day-to-day activities without one.
“It’s really heavy and everything I’d do it would get in the way,” Dayna said. “Other people may find it very helpful, but I like doing it without.”
Limb loss also focuses more deeply to how a young patient may feel powerless and dependent. Prosthesis can provide many important functions, but it is also essential that the child’s sense of loss be acknowledged and her self-esteem restored. As a spokesperson for a support group called “Unlimited Possibilities,” a Long-Island organization founded by parents of children with upper limb differences, Dayna has mentored children from ages 2 to 10 about the importance of maintaining high self-confidence while assuring parents that children with limb deficiencies can function well, with or without prosthetics.
“I try to assure the parents that their kids are going to be fine,” said Dayna. “They see me, and it makes them feel at ease.”
In the nation’s $900 million prosthetics industry, prosthetic limbs are said to be incredibly valuable to amputees because they help restore some of the abilities lost with the amputated limb. Prosthetic limbs still cannot rival biological body parts, but they do provide significant help.
Prosthetics can be high-tech, even robotic, in appearance, while others do not move at all. Others, like Dayna’s, are mechanical, powered by muscles that activate electrical signals. Prosthetic devices are made from plastic; the weight of the prosthetics can be adjusted for each person. Cosmetic prostheses are developed to look similar in color, shape, and texture to the biological right. Dayna will be get her prosthesis painted to match her complexion in June. Specialized artists create the perfect coloration, including wrinkles and painted finger nails to match the biological limb.
“Recently, she [Dayna] is more interested just a purely cosmetic type of hand,” Mandelbaum said. “We’re in the process of having that made for her.”
Prosthetic limbs are not mass-produced to be sold in stores; getting one can be difficult. They must be designed individually, like eyeglasses or dentures. At a few facilities, limbs are custom-made from start to finish. First, the prosthetic limbs are prescribed by a medical doctor. This involves a consultation with a prosthetist and a physical therapist. The patient then visits the prosthesis center to be fitted. Although some parts are custom-made, like the socket, many parts are manufactured in a factory, sent to the prosthetist and assembled at the prosthetist's facility.
As a member of the National Honor Society, Dayna’s required community service became her biggest humanitarian outreach. While her peers chose to clean up the environment or sell snacks to sixth graders at a school dance, Dayna felt her mission should have a global purpose. “I need to feel strongly about something before I can commit to it,” Dayna said. It was through her ambition to increase awareness of juvenile prosthetics that first connected Dayna with A Leg to Stand On, which aids children with limb deficiencies in developing countries.
A few days after the earthquake in Haiti, Dayna and her mother decided to develop the project “Hands and Hearts for Haiti,” which raised funds to purchase wheelchairs, canes and donated prostheses.
“I heard about all the amputations and felt so helpless which is useless in reality,” Dayna said. “My mom told me do something about it, and that I did.”
A Leg to Stand On has helped children in 12 major countries, including Columbia, India, Nigeria, Sierra Leone and Peru. The services include free corrective surgery, rehabilitation and continuous care as the children grow.
“The prosthetic need is so immense for countries such as Haiti,” said Gabriella Mueller, associate director for A Leg to Stand On. “To see Dayna, this young girl, take initiative of this magnitude is inspiring.”
Through collaboration with Dayna and students at Stony Brook University’s Southampton campus, A Leg to Stand On was involved in the university’s first annual Spring Arts Festival, HANDS FOR HAITI, a student-driven benefit to aid children who are victims of the earthquake. Students entertained their audiences with readings of original plays and poetry and, in the evening, song, dance and performance, music and comedy. A silent auction of student artwork was held; $2,600 was raised.
Dayna’s prostheses did not make her different; it was her mindset that set her apart. Although a junior in High School, she now prepares for the next stage in her life, tediously filling out college applications to schools in Washington, D.C.. She and her mother, Donna, have visited American University and Georgetown University, which is Dayna’s first choice. She fell in love with the capital’s history, shopping districts, and people. “I think I found the perfect fit.”
This photo gallery includes professionals and individuals that have a substantial involvement with the prosthetic industry. These images just highlight some of the developmental methods on how a prosthesis is made and images from the South Brook SouthHampton musical festival.
