June 2010

Outreach efforts in Haiti alter lives on both sides

Photo courtesy of Dr. Comfort.

Clinicians who have volunteered their time in Haiti since the January earthquake have helped restore mobility and independence to a new generation of amputees. But the patients aren’t the only ones who have benefited from the experience.

By L.W. Barnes

The earthquake that leveled much of Haiti and took more than 230,000 lives is months past, but the echoes of that devastation will be felt for decades to come by those who lost not lives but limbs. While the exact number of surgeries is still unknown, officials on the ground estimate that more than 1000 lower extremity amputations have been performed since the January 12 quake, creating, as one doctor put it, a generation of amputees in a land where most rely exclusively on their feet to get around.

Losing an arm or a leg in Haiti is not like becoming an amputee in the United States. The social stigma is acute, and the loss of general mobility for those in the poorest country in the Western hemisphere – one where much of the terrain is inhospitable to wheelchairs and quality crutches are scarce – can be truly crippling.

Following the 7.0 quake, the ensuing wave of amputations in Haiti quickly became one of the biggest stories to come out of the decimated landscape, with reporters and network television crews flooding Port-au-Prince to interview the victims of traumatic crush injuries: children who feared they would never return to school without a leg, beautiful young women weeping over the loss of a limb and with it their perceived futures as wives and mothers.

Some parents, clinicians said, agonized over whether to amputate a child’s gangrenous limb. Perhaps, they wept, it was better to die than to live as an amputee in Haiti.

Two Haitian patients waiting in one of the clinical areas of the Hanger Clinic in Haiti. (All photos in main article courtesy of Hanger Ivan R. Sabel Foundation.)

“The thought in Haiti is that if you don’t have two legs you don’t have a life,” said Mary Anne Kramer-Urner, MPT, a physical therapist from Dominican Hospital in Santa Cruz, CA, who spent two weeks volunteering in Haiti after the quake. “It’s just heartbreaking.”

The response to help Haiti was swift. Relief organizations parachuted in to rescue and treat the survivors who emerged from the rubble to find so much of the already impoverished country destroyed. Among those losses were clinics that had been operating for years to provide care to the disabled.

In no time, the call was out for donations. One of the world’s most well-known amputees, former model Heather Mills, used her star power on behalf of Physicians for Peace to solicit used prosthetic devices, crutches, canes, walkers and wheelchairs. (Mills lost her left leg below the knee in a 1993 motorcycle accident.) When CNN’s Larry King asked her to remove her prosthesis on air, she obliged, whipping off her leg and putting it up on the news desk to illustrate the type of injury that had devastated so many Haitian lives.

A unified initiative

What has emerged since then is a unified initiative by the O&P community (spearheaded by the American Orthotic and Prosthetic Association and the American Academy of Orthotists and Prosthetists) to provide additional aid to country’s newest amputees, help rebuild clinics and, over time, to leave Haiti with more O&P resources than ever before in the form of newly-minted native clinicians – those who will build, fit, and fix prosthetic devices long after the relief organizations have decamped.

The campaign was featured in an hour-long panel discussion in March at the annual meeting of the AAOP, which has about 3,000 members. A link has been posted on both the AOPA and AAOP websites to act as a clearinghouse of information for those who would like to donate time, money or equipment.

“The Academy is trying to keep this in front of the eyes of our members,” said Peter Rosenstein, the Academy’s executive director. “The people of Haiti will need help for years to come, and many of the groups in the O&P community have stepped up to help.”

Today a host of American-backed groups are offering aid or working on the ground in Haiti providing O&P care and training:

  • Physicians for Peace, which has been providing medical education and training in Haiti since 2005, particularly in rehabilitating amputees through its internationally recognized Walking Free program;
  • Healing Hands for Haiti (which has been providing O&P services to the people of Haiti since 1998, using both American and Haitian specialists);
  • the Advantage Program, which operates four hours from Port-au-Prince in Les Cayes,
  • the Haitian Amputee Coalition led by Hanger Orthopedic Group;
  • Missions of Hope, and
  • Project MediShare, which is partnered with the University of Miami Global Institute.

Among the most notable achievements since the quake have been those of the Hanger Ivan R. Sabel Foundation, in conjunction with its partners in the Haitian Amputee Coalition – the Harold & Kayrita Anderson Family Foundation, Physicians for Peace, the Catholic Medical Mission Board, and Donald Peck Leslie, MD, of the Shepherd Center— which has created a long-term prosthetic and rehabilitation center in Haiti called the Hanger Clinic.

Fighting disability in Deschappelles

Located at the Hôpital Albert Schweitzer (HAS), an undamaged local hospital 60 miles from Port-au-Prince in Deschapelles, and staffed by U.S. prosthetics experts from Hanger  and Physicians for Peace in conjunction with local Haitian medical professionals, the Hanger Clinic has been up and running since the end of February.

Lead prosthetist Jay Tew, CP, hard at work fabricating prosthetic limbs in the lab of the Hanger Clinic in Haiti.

“Prior to the devastating earthquake, there were an estimated 800,000 disabled people in Haiti,” said Ron Sconyers, president and CEO of Physicians for Peace, in a statement to the media on February 20. “That number has obviously skyrocketed; there are now even more amputees in the country without access to specialized treatment. This new and permanent facility will provide the critical and rehabilitative care these children and adults so urgently need.”

As of May 18, more than 300 Haitian amputees were walking on new prosthetic limbs created at the Hanger Clinic. In addition, more than 13,000 pounds of prosthetic fabrication equipment and machinery had been shipped to Deschapelles. A mobile prosthetic care unit donated by global O&P manufacturer Otto Bock Healthcare will enable delivery of care to those who are unable to be transported to HAS.

Currently there are four American practitioners and technicians on the Hanger team and four Haitians in training to be technicians. Like some of the other groups, Hanger and the Haitian Amputee Coalition are educating local Haitians to become prosthetists and technicians to provide  long-term care in Haiti. It’s not just today’s amputees that must be fitted but the many growing children who will need new, larger prostheses and periodic adjustments for decades to come.

Paul E. Prusakowski, CPO, FAAOP, owner of O&P Technologies in Gainesville, FL, and past president of the AAOP, has been involved in the coordinated efforts of the groups working in Haiti as well as the supply chain.

Questions of componentry

The groups on the ground are doing similar work, Prusakowski said, but with different skill sets, they’re taking somewhat different approaches. For example, some are using 30mm technology (titanium, aluminum or stainless steel modular components that are today standard practice in Europe and the United States), while others favor ICRC– low-cost, high-strength componentry developed by the International Committee of the Red Cross. ICRC approved components are manufactured using polypropylene, a material that is durable, compatible with tropical climates, and easy for patients, specifically those in developing nations, to maintain.

A patient arrives for a fitting appointment at the Hanger Clinic in Haiti.

In the long-run, clinicians say, there will have to be some agreed-upon standardization of technology so that continuing care can be achieved.

“That’s the million-dollar question,” Prusakowski said. “Will it happen? When the funding dries up and the donors go away, will these parts be financially sustainable by the local economy? My thought is we’ll see a great shift toward lower-cost ICRC systems because they’re affordable.”

Prusakowski, whose last trip to Haiti was in April, has been working with The Advantage Program to fit and create limbs. Originally, he said, they were using 30mm supplies but the long-term economics didn’t work out. They can make an above-knee prosthesis for less than $250 using ICRC components, while 30mm costs about that for a below-the-knee limb. As a result of the switch, they recently bought enough components to make 200 limbs using ICRC supplies.

Perhaps the biggest sticking point among the Haitians and clinicians on the ground is the use of used componentry versus new. Although many limbs have been donated (they are harvested for parts, not given wholesale to recent amputees), clinicians say the parts filled an immediate need but only go so far.

“It’s better to send money and get a stocked shelf full of the same supplies than sending a bag with 20 different parts. That’s when you’re left sorting through a junk bin hoping you find what you need,” Prusakowski said. “It’s a disservice to the people and practitioners who are working there. It complicates everything when prosthetics need repairs down the road. The better approach is to stock an inventory of lower-cost supplies to establish a long term sustainable solution.”

While some donated/used components have been useful to have on hand, Prusakowski says he’d like to see them deemphasized. Companies like Cascade Orthotic Supply, which is the largest distributor of orthotic and prosthetic products, he said, are offering ICRC supplies to those working in Haiti at cost.

“We bought boxes of feet, appropriately colored brown feet, and someone showed up with a duffle bag with donated feet, mostly Caucasian,” Prusakowski said. “They were junk, stuff we’d throw out in the US. The fact is it didn’t take much money for us to stock the shelves with a new, correct and complete sets and sizes of appropriately colored parts.”

It may seem like a small point, but the injured Haitians tell clinicians that the cosmetics of the appliance are indeed important.

A resilient people

A few of the 300+ Haitian amputees who have received prosthetic care at the Hanger Clinic.

The post-quake visit was Prusakowski’s third to Haiti, giving him a vivid before and after glimpse of a place and its people forever changed by a natural disaster. What he remains impressed by is the resilience of the Haitians, who waited patiently and calmly at the clinics for days to get care.

“They were ready to get on with their lives,” he recalled. “The stories are terrible. They lost houses and jobs and family. So much stuff got lost besides the limbs.”

Like so many clinicians who have traveled to ravaged lands to provide care, Kramer-Urner said she’s been forever-changed by the experience that brought her up-close with cataclysmic devastation – with long, desperate lines for food and water that never came, and the tears of young girls who felt all hope a  future was lost with the removal of their limbs.

Even though she prepared for the trip, one she volunteered for under the umbrella of Physicians for Peace, she was wracked by what she saw, both the physical destruction of the landscape and the hopelessness.

“It broke my heart,” she said.

For two weeks, the neurological physical therapist with an emphasis on amputee rehab worked at the Hanger Prosthetic Clinic at HAS, on some days seeing more than 20 patients. Some had not yet even touched their amputated leg and had to be helped through desensitization, fitting and wearing prostheses for walking and balance.

Not all the patients were new amputees. Many arrived seeking care for old injuries, such as one woman who had lost her leg 22 years ago in a motorcycle accident. She had never had a prosthetic leg, and used crutches to get around and care for four children.

“She was one of the first people I was able to fit with a prosthesis,” Kramer-Urner said. “Up in the parallel bars she was able to stand on two legs for the first time in decades. It made me cry.”

Another patient, a man in his seventies, came down the mountains on a horse. He’d lost his leg many years prior and had also never had an artificial limb. In just one day, he was able to don a prosthesis, stand and walk with the aid of a walker.

The experience changed Kramer-Urner’s perspective. Now the little things that might otherwise bothered her are meaningless.

“I’ve been to Haiti,” she said. “It changed my tune in a really good way.”

Soon her husband, Dave Kramer-Urner, PT, also a physical therapist, will be able to share that perspective. He was scheduled to travel to Haiti this month as a volunteer with Physicians for Peace.

Six months after the quake, volunteers – orthotists, prosthetists, technicians and physical therapists –are still very much needed and will be for years to come, officials say. The first step is to contact one of the organizations currently working there to provide care. Winging it is highly discouraged.

“The worst thing that can happen is for people to go in to Haiti and act like weekend warriors making legs,” Prusakowski said. “You’ve got to be coordinated with an organized group.”

The tips from those who have traveled to Haiti post quake go something like this: Leave your preconceived notions at home. Be willing to adapt to new techniques. If you think you’re going to treat a patient in Haiti the same way you do in the U.S., you’ll be sorely frustrated.  Be ready to work with simpler materials and techniques. Learn which techniques your volunteer group uses. Get your vaccinations and be prepared for anything.

“When people go hungry and don’t have shelter and the rainy season comes people get desperate and things happen,” Robert Kistenberg, MPH, CP, United States National Member Society Chair of the International Society of Prosthetics and Orthotics, told those assembled at the AAOP panel discussion. “You need to be aware of what you’re getting in to when you go to Haiti.”

Be ready, clinicians say, to do some teaching, some unglamorous work, and most of all, to advance the organization you’re helping.

“You can make legs, but spending time assisting the organization and the facility – repairing equipment for example – is key,” Prusakowski said.

If you want to send supplies, find out what’s needed by consulting the appropriate organizations’ websites.

“This problem is just 90 minutes away from [the United States], said Kevin Carroll, CP, FAAOP, vice president of Prosthetics for Bethesda, MD-based Hanger Orthopedic Group. “It’s important for us to help and do education and everything in our power to help [the Haitians] access prosthetic componentry for many years to come.”

L.W. Barnes is a freelance writer and editor based in Alexandria, VA.

Additional Resources:

Used prosthesis can be sent to Prosthetics and Component Clearinghouse (POCC) in Atlanta. The following link provides the guidelines:

http://usispo.org/pocc/guidelines.asp

MedShare International
c/o P.O.C.C.
3240 Clifton Springs Road
Decatur, GA 30034

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