Thursday, February 18, 2010

Haitian amputees already facing discrimination

From Time magazine:

More than a month after his crushed left leg was amputated just above the knee, Gedeon Ralph Mary, 23, still cries. Not from the physical pain, which has long since subsided, but the agonizing thoughts of the outcast existence amputees so often face in Haiti. "Look at it!" says Mary, who survived a pancaked building in the Jan. 12 earthquake, as he throws a blanket off the bandaged stump of his limb inside the University of Miami's Medishare tent hospital at Port-au-Prince's Toussaint Louverture airport. "People are going to think I'm a freak. I wanted to be an electrical engineer. How will I ever get a job now?"

In most countries today, even developing ones like Haiti, the answer would be: Get a prosthesis. But in the western hemisphere's poorest nation, where prosthetics are primitive when they exist at all, that's easier said than done. It looks even harder after the earthquake, given the overwhelming demand for artificial limbs: of the 250,000 people injured, doctors estimate as many as 100,000 are amputees. And that doesn't count the victims who will probably need limbs amputated down the line because of wound infections. Outside the Medishare tent ward, Florida orthopedic surgeon Dr. Albert Volk watches a teenage girl limp by on crutches and shakes his head. "An open tibia fracture, with the bone exposed," he says. "Chances are in six months she'll lose the leg below the knee."

Victims like her could eventually bring the number of Haiti's quake-related amputees to as many as 150,000 — meaning almost 2% of the nation's 9 million people could be in that condition by year's end. (To get a sense of scale: the years of the war in Afghanistan and Iraq have, so far, produced just about 1,000 amputees among U.S. military personnel.) So can Haiti ever move ahead if such a large share of it has so much trouble moving at all, without the prosthetic help needed to be productive again? Artificial-limb donations are beginning to trickle in; doctors are urging charities, especially in the U.S., to collect used prostheses, as the late Princess Diana convinced them to do for land-mine victims. But it's obvious that Haiti can't rely on foreigners to fill such a vast order, or to provide the necessary physical therapy its amputees will require to be able to use them at all. "This could be the single biggest medical problem [Haiti] will have as a result of the earthquake," says Volk.

As a result, just as development experts are urging the government and the international donor community to train Haitians in skills like earthquake-resistant building construction, many are recommending that a large-scale prosthetic industry be formed. "Like the building skills, it would fill an economic-stimulus need as well as a desperately needed social one," says one U.N. official in Haiti. That seems especially true given the cost considerations. In the U.S., for example, the most basic prostheses can cost between $1,000 and $2,000. Given Haiti's cheap labor, prosthetic-assembly plants could feasibly produce them for sale at half that price.

Local input is just as crucial on the physical-therapy side — especially if Haiti is going to be more accepting of amputees. At the Medishare complex, which is now the largest hospital in Haiti, disaster volunteers like Miami podiatrist Dr. Sandra Garcia-Ortiz have begun training Haitians in recent days to help amputees properly care for wounds. If those injuries go neglected, for example, the limbs can become flexed, or too rigid for prostheses to work. "Our hope," says Garcia-Ortiz, "is that enough Haitians will see that there are too many amputees for them to ignore now, and that this kind of work will be something they want to do."

That, in turn, could go a long way toward the change in the Haitian mind-set that has to take place before any kind of prosthetic boom can take off. "This has to be about Haitians helping Haitians," says Dr. Henri Ford, a Haitian American and chief surgeon at Children's Hospital in Los Angeles, who is also an earthquake volunteer in Haiti. "Amputees are too often told in Haiti, 'You are a burden to society and to your family — people do not have the time for you.'" Before he performs an amputation there, Ford says, patients often shout, "You might as well as kill me, because I won't be able to make a living." Haitian officials "have no choice now but to figure out a way to make amputees functional as valued contributors."

Some foreign charities, like Healing Hands for Haiti, based in Salt Lake City, have long had clinics in Haiti to fit victims with replacement limbs and even teach Haitians how to manufacture them — important since the country's rock-bottom education levels hardly meet the sophisticated design demands of prosthetics. But studies show that before the quake, less than a quarter of Haitian amputees ever had access to replacement limbs. (Healing Hands says much of its Port-au-Prince clinic was severely damaged in the temblor.) Most previous amputees were like Verly Boulevard, 31, who lost a leg in a car crash and has spent years hobbling on crutches, unemployed. "In Haiti, if you're an amputee you don't exist," says Boulevard as he waits for water at a crowded and squalid tent camp in the Port-au-Prince suburb of PĂ©tionville. "It will be difficult to change that, even after the earthquake."

Still, even Mary is more sanguine about change, given that victims like him and Boulevard are now far less alone in Haiti. "People will be forced to think about it," he says. Mary was one of only five among 16 engineering students in his classroom who survived when the quake sent their five-story university building crashing down on them. But he also realizes that many postquake amputees like himself are educated — and that they can be part of the solution, perhaps as prosthetic designers. "I know that I can still be a good electrical engineer," Mary admits. And Haiti can't afford to ostracize any engineers right now.