Haiti: Rehab Helps Patients Regain Independence
When the dust settled after the 2010 earthquake in Haiti, Shelove Julmiste was alive. But something was very wrong.
Julmiste was on the third floor of a six-story building in Port-au-Prince when the earthquake occurred, on Jan. 12, 2010. The building collapsed, crushing her left leg—an injury that later required amputation below the knee. Five years later, she still doesn’t know how she escaped.
Julmiste, now 29, received a prosthetic leg and recovered through Partners In Health/Zanmi Lasante’s rehabilitation services, offered then at Cange in Haiti’s central plateau. She now works as a rehabilitation coordinator for patients requiring prosthetics/orthotics at University Hospital in Mirebalais.
“If rehab didn’t come to Haiti, I could have lost both my legs, because my other foot was also crushed in the earthquake,” she said. “It’s after lots of exercise that my foot started to get better. I don’t know for everyone, but rehab is good for Haiti. One hundred percent of the people who have done rehab think it’s great for Haiti.”
PIH/ZL’s rehab program has expanded significantly since 2010, said Dr. Andree LeRoy, who directs the program at University Hospital. LeRoy is a Haitian-American physiatrist, or rehab physician, who spends part of her time at Boston’s Spaulding Rehabilitation Hospital. She returned to Haiti a month after the earthquake to help assess the country’s need for rehabilitation care. When PIH/ZL decided to create a comprehensive rehab program in 2010, LeRoy served as an adviser.
The program initially consisted of community rehab educators, who identified people in need of rehabilitation services and helped get them into treatment, she said. Now, a nine-bed inpatient rehab ward is part of University Hospital, which PIH/ZL built with the Haitian Ministry of Health. The ward opened in May 2014. A 10-bed Center of Excellence in Rehab and Education was completed in June and is expected to open in late February at University Hospital.
“We’re really excited that this is coming into fruition after all this time,” LeRoy said.
She remembers the pre-earthquake days in Haiti, when people who needed amputations had to see a surgeon, wait for the wound to heal, try to get fitted for a prosthetic and then—most likely—encounter complications because they hadn’t received rehab services to strengthen the existing limb and prepare it for use with a prosthetic.
“Without any therapy then you’re going to put a prosthetic on the person, and they can’t really use it properly,” LeRoy said. “They walk with a limp, they have other issues—a lot of skin breakdown can occur because they haven’t been prepared with the proper therapy.”
Before the earthquake, Haitians who could afford to do so could travel to Port-au-Prince and pay $25 to $50 U.S. for a prosthetic. Additional costs would include transportation, overnight accommodations, and return trips for outpatient services and therapy.
Now, those patients can come to University Hospital and immediately be referred to a sizable rehab team of eight educators, six technicians, two physical therapists, two doctors, and two nurses. LeRoy estimates the rehab program has served more than 1,000 patients since 2010.
And the care continues after people are discharged. Because of the rough Haitian terrain, a prosthetic limb lasts two to three years, says physical therapist Jonah Feldman. The rehab program provides new fittings and helps with replacement prosthetics. PIH/ZL doesn’t make the prosthetics, but pays for patients to receive those services at Hospital Albert Schweitzer in Deschapelles. It’s “a lifelong follow-up,” Feldman said.
Rehab services also have improved at other sites in Haiti. PIH/ZL runs a small rehab program in Saint-Marc and collaborates with the rehab program at St. Boniface Hospital. The University of the Aristide Foundation has partnered with the State University of New York at Stony Brook to train physical therapists in Haiti. This five-year master’s program is the first physical therapy program in Haiti, which will be an asset to the country.
“Over time, [rehab programming] has just grown exponentially,” LeRoy said.
Renoit Joseph, a rehab technician, works with 21-year-old Jean Sauveur Sodeline at University Hospital in Mirebalais, Haiti. Joseph has been working with her since Oct. 23. She couldn't walk when she was admitted. (Photo: Cecille Joan Avila/Partners In Health)
Julmiste has watched the rehab program evolve—and experienced an evolution of her own.
“When I came [in January 2010], I had nothing,” Julmiste said. “I started to work, I started to get better, do little things, do little activities. … It changed my life a lot. When I started working, I had money in my hands. Before I started working I used to have bad headaches, and I would cry so much.”
Part of her job now is to stabilize patients and help them understand what it means to experience amputation. She also explains the rehabilitation process and what to expect when receiving a prosthetic.
She and LeRoy offer one success story after another. Julmiste describes a woman whose leg was crushed in a mudslide. The woman, afraid of being unable to care for her child, refused amputation. When she developed a dangerous fever, doctors sent Julmiste to try to change her mind.
“I told her that in January I lost my leg, because of the earthquake, just like you lost your leg. … Then I asked her, ‘Do you want me to show you?’ And then I lifted up my pant leg, and she was shocked. She said, ‘OK, I accept it.’”
The woman underwent surgery and was walking with a prosthetic three months later, Julmiste said.
One patient who is a paraplegic and uses a wheelchair plans to go to nursing school so she can work in Haiti, LeRoy said. Another patient suffered from a spinal cord injury and now competes in wheelchair racing. The rehab program also helps patients with neurological diagnoses, such as strokes and brain injuries, and has helped numerous patients with these diagnoses recover and return to work.
The rehab program intentionally hires people like Julmiste who have participated in rehabilitation. Among her colleagues is Quesnel Cirena, who is mentioned late in Mountains Beyond Mountains, Tracy Kidder’s book about PIH co-founder Dr. Paul Farmer. An injury with a sugar cane grinder resulted in Cirena’s above-the-elbow amputation.
Cirena, referred to in the book as Kenol, has worked for PIH/ZL for four years, LeRoy said.
“His injury was not earthquake-related, but I think as a result of the work we did after the earthquake … we have more awareness around what people with disabilities are capable of doing and can do, and there’s less stigma related to it,” LeRoy said, adding that Cirena now attends university at a diplomacy school in Port-au-Prince.
In a richer country, these success stories would be less remarkable. But in Haiti, stigma and the limited availability of treatment compound difficulties for people with physical disabilities. People who cannot contribute to the household often are viewed as burdensome. University Hospital’s rehab program aims to help patients return to a productive, more independent life, decreasing the burden of care on their families.
Physical therapist Jonah Feldman sorts through donated equipment inside a storage closet in the rehabilitation ward at University Hospital in Mirebalais, Haiti. (Photo: Cecille Joan Avila/Partners In Health)
A cultural shift
Although much work remains, LeRoy said, PIH/ZL is combating the idea that life ends after a severe injury or amputation. Even some clinicians at University Hospital had to see the benefits for themselves, she said.
“People didn’t have this concept that once you are injured, you get out of bed and you move, and it helps you get better,” LeRoy said. “It was more so the mentality—which is still changing and growing and evolving—that, ‘oh, you stay in bed or you stay on bed rest until you’re better.’ So it’s a big shift that’s happened in both the hospitals and in the homes.”
Feldman said educating family members of people receiving rehabilitation care is a key part of the program. When community members see neighbors returning to church or work after experiencing rehab, it can alter their perspective.
“We’re all-inclusive of people with all levels of ability,” he said, “and we feel that with rehab growing in Haiti and being more visible, this will hopefully change the tide, culturally speaking.”
There’s no shortage of need for rehab services in Haiti. About 10 percent of Haiti’s 10.2 million residents are thought to have a disability, LeRoy said. And those people are increasingly speaking up and serving as their own advocates, she said.
“A lot has changed,” she said. "It's seemed so subtle because it's been almost five years, but a lot of amazing things have happened. A lot of patients have made remarkable recoveries that we didn't even think were possible."
Shelove Julmiste, a rehab coordinator at University Hospital, sits in the recently completed Center of Excellence in Rehab and Education. The center is scheduled to open in the first months of 2015. (Photo: Cecille Joan Avila/Partners In Health)
What’s next? LeRoy offers an ambitious list.
She hopes to see PIH/ZL’s community program grow to cover more of the region. Also part of her vision: increased services in Saint-Marc and the expansion of the new Center of Excellence in Rehab and Education to include a state-of-the-art gym and more bed space.
Environmental changes also are necessary to accommodate people with disabilities in Haiti, LeRoy said. She hopes to see new construction in Haiti designed to be accessible, employing principles of universal design.
Another piece of LeRoy’s vision is helping to build a cadre of trained rehab professionals. Ideally, that would include a rehabilitation residency program at University Hospital, specialty training for nurses, and training for psychologists and community health workers.
Her vision reaches beyond Haiti, however, to other countries where PIH works.
“The team down here is so strong that we could be offering assistance to maybe Rwanda, maybe Malawi, maybe other places that are emerging markets or in the developing world that need help and support in building the infrastructure we have,” LeRoy said.
As far as Julmiste is concerned, plenty of work remains to be done at the new Center of Excellence in Rehab and Education in Mirebalais.
“When I look at it, I think it’s still too small,” she said. “We have a proverb that says: Piti piti zwazo fè nich li (little by little the bird makes its nest). … We need a really big building for the amount of people there are that want to do rehab. We will fight for this: to get more room in order to care for more patients to rehabilitate.”