How are good deeds returned? With the feeling in a prosthetist’s heart when he watches an amputee walk on new legs. When watching a child feed himself because of arms the team constructed. In providing rehabilitation services where there have never been services before. Each of these is a worthy motive.
“In a prosthetist’s shop, miracles happen every day. People are restored,” said Peter Rosenberger, president of Standing With Hope. “Sometimes that goes unnoticed. I know so many prosthetists who are decent, kind human beings who want to know that they made a difference. When you see the looks that we see on people’s faces … there are no words.”
Rosenberger admits he is biased in his appreciation for this type of volunteer work. Although he is not a prosthetist, he has worked with many, both because of his wife Gracie’s bilateral transtibial amputations and also because of their work helping amputees in Ghana.
Standing With Hope
In 1983, Gracie suffered a car accident that would lead to more than 60 surgeries and, in 1991 and 1995, the amputation of both legs below the knee. It was during that time that the Rosenbergers decided to do more to help amputees like Gracie who were unable to receive the same type of care.
Standing With Hope is the evangelical, nonprofit organization that Peter and Gracie Rosenberger formed in 2005 to address the needs of amputees in developing countries.
“We are not preachers,” Rosenberger said. “But we feel that we have an important message that is going to mean something to people who are dealing with painful realities in their lives, based on our own experiences.”
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Rosenberger sets the organization’s vision in motion and coordinates all the players involved in each mission. He works with several prosthetists and manufacturers to determine necessary and available resources, as well as with the Ghanaian government to plan trips and maintain relationships.
“Gracie and I determine the best type of [prosthesis] we can provide that will be durable and allow this person to live a full and active life,” he said. “What good does it do to [donate a prosthesis] that is going to break down and require extensive maintenance?”
The Rosenbergers stand by Gracie’s policy statement: “I will not put a leg on anyone that I will not wear myself.”
According to Peter, Gracie also wants to ensure that the donated legs will function for years.
“We may have to make adjustments. We will replace a foot, or even make another socket because the limb has reduced down. But if I come back and [the prosthesis] is torn apart, then I failed at my job,” he said. “That is a tough policy, but it is one that we are going to stick by.”
And they do. The leg that Standing With Hope donates to amputees in Ghana would cost approximately $7,000 in the United States.
“It is durable, lightweight, functional and easy to repair. I come back each year and the leg is still there,” Rosenberger said. “I may need to realign some things, and I have replaced a lot of feet. But I can get feet.”
In order to fund Standing With Hope’s outreach in Africa, Peter and Gracie speak and perform around the country, to the troops and their families at Walter Reed Army Medical Center, on television, and at various colleges and organizations.
“Everything that comes in to us goes to Standing With Hope,” Rosenberger said. “We are the fundraisers. We are the marketing brochures.”
Rosenberger offers prosthetists the chance to join Standing With Hope, as contributors or volunteers.
“[Prosthetists] can go over there and not worry about the business of it or about billing, but about simply using their hands to serve another human being,” Rosenberger said. “It changes their lives. It changed my life.”
Reasons to reach out
Most prosthetists enter the profession with the goal of helping people.
“Ever since I first found prosthetics as a profession, I have always enjoyed helping people, working with my hands and travel,” said Robert Kistenberg, MPH, CP, FAAOP, prosthetics coordinator for the Master of Science in Prosthetics and Orthotics Program in the School of Applied Physiology at Georgia Tech and clinical director of Sonrie Ministries Inc. “I saw becoming a prosthetist as a means to do all of those things.”
Kistenberg’s international outreach began after a colleague requested his help with an amputee named Adrian he had met on a surgical mission to Belize. Adrian is a congenital, bilateral transfemoral amputee who had become skilled at navigating his way on a skateboard.
Kistenberg and John Fergason, CPO, arranged for Adrian to visit the United States for 8 weeks while they fit him for prostheses.
“He wore them and did remarkably well,” Kistenberg said. “It was a profound experience for everyone, [but] then he had to go back home. In the back of my mind, there was always the concern as to how we would follow up with him once we made his legs.”
Fortunately, the doctor who originally made the connection with Adrian was returning to Orange Walk Town, Belize for a surgical mission 9 months after Adrian left the United States, and Kistenberg decided to accompany him.
“The group that brought the surgical team into Orange Walk Town had announced on television and radio that one of the men who had made Adrian’s legs was coming to Belize, so anyone who needed prosthetic services should go to the restaurant where we were meeting,” Kistenberg said. “[But] they did not let me know they had done this, so when we pulled up to the restaurant, there were about 15 amputees awaiting our arrival.
“It was with that we realized that there were absolutely no services in the country. [Amputees] could go out of the country to Guatemala or Mexico if they could afford it, but most people having amputations did not have that kind of resource.”
Kistenberg decided to help provide those resources and, in 1996, the initial steps were taken that ultimately formed Project Hope Belize.
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Patient management
Project Hope Belize works with a sister organization, Sonrie Ministries Inc., a 501c3 nonprofit humanitarian outreach organization to aid with the provision of O&P services in Central America and the Caribbean. To purchase a facility and start a clinic in Belize, Sonrie had to establish a charity within the country. In 2000, Kistenberg and his team set up Project Hope Belize as a full-time clinic providing O&P services to people in Belize. The team hired Adrian as the clinical manager.
“He is the one who does the patient management between the missions,” Kistenberg said. “He has been trained on the job, as well as come up to the United States [for training] a couple different times. Because he has been doing this now for 10 years, he is familiar with what people go through when they have amputations.
“We are working toward getting him up to speed with actually making prostheses under supervision when we have teams involved so he is able to do that a little more independently, but he is not there yet.”
In the meantime, teams of clinicians come to the facility three or four times a year.
“There may be a need to have a full-time clinician down there, if we had the resources, but there is a lot involved,” Kistenberg said, referring to the equipment and supplies necessary to run a full-time, self-supported facility.
Caring for amputees overseas
Practitioners who want to volunteer overseas can go about it in several different ways, said Kistenberg.
The first is a two-part model involving transport programs. One option is that volunteers meet with patients, take molds, manufacture their devices in the United States, and then send the completed prostheses or orthoses back overseas to patients. In the second method, practitioners arrange for patients to be transported to the United States for treatment. After receiving devices or surgeries, the patients return to their countries. Both methods allow for little, if any, follow-up, unless second visits to the areas are planned.
It is not an uncommon practice for organizations to place children with temporary families while they receive surgeries or O&P care. These organizations work to minimize the cultural shock that children sometimes experience after spending weeks or months in the United States and then returning to their home nations.
“The next service model is often referred to as ‘parachute prosthetics and orthotics,” Kistenberg said.
This method entails a team of people – either from a church, other religious organizations or a service organization – coming together to provide a service in a particular country or region. Typically, the team flies into the country, provides a service and then leaves.
“It is challenging to do that because it requires coordination with people on the ground and there may or may not be follow-up visits and trained people,” Kistenberg said. “It can be disruptive … if there is a clinic that is operating somewhere in that community. Whoever previously had been paying the local person for services is not going to pay for services anymore [if free services are available every few months].
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“It is not uncommon for the parachute-type of services – whether they are medical or rehabilitation services – to put people out of business.”
Kistenberg said that his team initially used this model prior to forming Project Hope Belize.
“We had a facility to work in, but there were no other groups doing services in Belize. We used this as a stepping stone to establish a full-time facility.”
Another service model – the method Kistenberg’s team now employs – involves establishing a nongovernmental organization within the community. The most integrated method of volunteering is creating a facility that not only will exist within the community but be run by native members of that community.
“The ultimate goal is to have the community that needs those services supporting the facility that is run by that community,” Kistenberg said.
Rosenberger agrees.
“When you take on an amputee, you need to be prepared to take them on for life,” Rosenberger said. “If you do not have an infrastructure that can care for these people, you might as well not even go.”
Standing With Hope worked with Ghana’s government to provide training and equipment in conjunction with its existing infrastructure.
“Our goal is not to go over there and fit 1,000 amputees,” Rosenberger said. “Our goal is to equip [the community] to fit 1,000 amputees.”
Rules and regulations
Practitioners interested in offering O&P services overseas should research laws and regulations that may affect the mission.
“If you are going to bring [supplies] into a country, like prosthetic feet and all the rest of the materials you may need, you have to make arrangements with that country well in advance to let them know,” Kistenberg said. “The last thing you want is to be told they are holding your supplies until they get clearance, and you have a 2-week mission planned with no supplies.”
In addition, he advises checking with the U.S. government for travel restrictions and potential health concerns.
“You might want to get health insurance, make sure you have all your vaccines and everything,” he said. “That is not a regulation, it is more common sense.”
Kistenberg also suggests researching the need for visas and passports for particular countries.
Developing countries do not have the same regulations for O&P practitioners as they do for other volunteer teams, such as surgical teams.
“I am not aware of that same level of certification for developing world O&P, but it is not uncommon for these groups to be part of a medical team,” Kistenberg said. “It does require some preplanning and checking the requirements.
“Most developing countries have so many other higher priority needs, limited resources and the demand for even basic health care, that certainly supercede the need for rehabilitation services.”
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Listen to advice
Kistenberg, who currently serves as chair of the U.S. National Member Society for the International Society for Prosthetics and Orthotics (ISPO), offers the following advice for anyone who wants to donate time to amputees in developing countries:
- Take stock of what it is you want to do. How long should the trip last?
- Figure out where you want to go. “You could throw a dart anywhere around the globe and find people who could use help for prosthetic and orthotic rehabilitation services,” he said.
- Figure out what it is going to cost. There are organizations that assist with funding transportation, as well as those that welcome volunteers, but they must cover the price of the plane ticket.
- Look at how it is going to affect your current job. Would you be able to get a week away from work or would it require billing missed time as vacation?
- Research the type of services currently available in the area. What are the needs of that particular location?
- Partner with organizations, such as ISPO, to take advantage of resources that might be available. Kistenberg said founding a clinic in a country where there has been no previous outreach, although rewarding, requires a great deal of work and a long-term commitment.
“There is some wheel re-creation where maybe it is unnecessary,” Kistenberg said. “If I knew then what I know now, I would have gone about Belize in a different way. But that is how I learned what I know now.”
Good deeds are returned
For volunteers, it does not matter whether others donate time, skills or resources — or where in the world they travel to help. They believe good deeds are always rewarded.
“There are lots of organizations that you can work with,” Kistenberg said. “I do not even know that it matters so much which one you give your time to, but I think everyone should find some time that they are able to give in some way. The ways it comes back to you are ways you may never even be able to conceive until it does.”
Kistenberg experienced this firsthand.
“I actually met my wife on that first mission where all those people were waiting for us on the porch,” he said. “She was one of the nurses on that trip, and now I have a wife and two kids.
“I try to explain to students the difference between providing somebody a prosthesis because you can, versus providing them a prosthesis because they can pay for it,” Kistenberg said.
Rosenberger believes that everyone should volunteer overseas.
“After 70 surgeries and both legs amputated, if [Gracie] goes over there, well then, nobody has an excuse,” he said.
He tells a story about a young boy in Ghana who had both arms amputated following electrocution. After his father pleaded with Rosenberger and his team, they agreed to fabricate arms for the boy, despite not specializing in upper extremity prostheses.
“The power kept going off and we could not see. We moved outside, and built his arms by the headlight of a van.
“After we finished, I held up my hotel key card and [the boy] grabbed the card with his new prosthetic hands. That is the first time he has been able to do that in 3 years,” Rosenberger said.
“I love my wife and I love my job. It is the greatest thing I have ever done in my life.”— by Stephanie Z. Pavlou
For more information:
- Standing With Hope accepts component donations and is in need of laminating adaptors. For more information, visit www.StandingWithHope.com.
- www.SonrieMinistries.org
