“A Second Chance at Life”
Claudine Humure could’ve been defined by her losses — parents, siblings, her right leg. Instead, she is driven to improve others’ lives.
Claudine Humure unlocks her dorm door, where the college senior and resident assistant has hung a whiteboard friends filled with messages like “Hey Girl!” and “You’re the best!” She crosses the tiny room in several steps, one stride a bit stiffer than the others, and settles on her single bed. The petite Rwandan has an arch of perfectly coiffed hair and fuchsia lips, which part in a gleaming smile as she apologizes for the “mess.”
Her room is immaculate. Like many college students, she has the obligatory Bob Marley poster. (“You just can’t live in that negative way…make way for the positive day.”) A collage of inspirational quotes, written on multi-color sticky notes, cover the wall above her desk. A bear-shaped container of animal crackers sits, half full, on her bookcase.
Other little things around Humure’s room hint that she was no typical college senior. Alongside pictures of friends and family, there’s a framed photo of her with former President Bill Clinton. (A meeting she describes, humbly, as “really nice.”) Below that, there’s a picture of her and President Paul Kagame of Rwanda. Crutches with leopard print pads (her “signature”) rest underneath her bed. And next to the yoga mat and bike by the door, a delicately sculpted prosthetic for her right leg leans against the micro-fridge.
At 24, Humure has endured more tragedies than most people will experience in a lifetime. She lost her parents to the Rwanda genocide before she turned 5. She and two of her siblings grew up in an orphanage. On a single day when she was 12, she learned she had cancer and needed a leg amputation. Shortly afterward, she traveled to the United States to undergo treatment at the hands of foreign doctors, whom she didn’t know nor could understand.
It was along this journey that Partners In Health staff met Humure. She was one of the first patients PIH clinicians helped while establishing a program in Rwanda in 2005. In many ways, her story is miraculous and inspiring, but it also reflects the raw need for quality health care in some of the world’s poorest places. She traveled to two countries, visited four hospitals, and spent months of time searching for a diagnosis and proper care. Finally, she found both through PIH, but only after needlessly suffering a great deal of pain and anguish.
“I would have died,” Humure said candidly, thinking back on the “what ifs” from her dorm at Wheaton College. “Partners In Health came so that people could have a second chance at life; so I could have a second chance at life.”
A mysterious swelling
Rwanda was barely 10 years past a horrific genocide against the Tutsis, in which more than 800,000 people died, when the government invited PIH to help provide health care in some of the most remote parts of the country. Government officials wanted to set up HIV care, which was practically non-existent beyond the capital of Kigali. PIH leaders had no problem offering such services, on the condition that it would be part of an overall plan to build the local health system — from community outreach and rural clinics to referral hospitals and labs.
Dr. Michael Rich, the first executive director for PIH in Rwanda, and Dr. Joia Mukherjee, PIH’s chief medical officer, were among the clinicians who set up the program in March 2005. They were scoping out potential sites and traveling near the northern border with the Democratic Republic of Congo (DRC) when Beth Collins, director of the Clinton Foundation in Rwanda and a good friend, reached out for a favor. She told them about Imbabazi Orphanage in Gisenyi, run by a friend named Rosamond Halsey Carr. A brilliant young girl was there with a badly infected leg. Carr had sought care everywhere, to no use. She was wondering if the U.S. doctors would make a house call. Rich and Mukherjee agreed, despite the fact they had yet to establish a clinic.
Mukherjee remembers entering the orphanage to find Humure confined to a bed by a window.
“Her knee was the size of a football,” Mukherjee says. “She was so morose and sad. My heart went out to her.”
Humure remembers her too. Although it’s a small miracle she does. By then, the 12-year-old had been to three hospitals throughout Rwanda and one across the border, in Goma, DRC. Countless doctors had examined, poked, and prodded her. One in Goma placed her leg in a cast, only to remove it a week later after the swelling became unbearable, and then withdrew fluid from her knee. It did nothing to stop the pain. None of the doctors, not one, had any idea what was wrong, nor had they provided any relief.
The pain, Humure says, began during a soccer game, after she stopped the ball with her right knee. She played through it and then, when it persisted, talked to one of the orphanage caregivers, or “mothers,” Tamari. The two applied a hot compress to the girl’s knee once a day, then twice a day when that didn’t seem to work. Finally, they consulted the orphanage doctor, who prescribed pain killers. The pills worked for several hours at a time before the pain returned with a vengeance. One day she tried to get out of bed, only to find the sensation in her knee so excruciating she had to lie back down. From then on, she was bedridden, looking longingly through her window and crying as she watched friends outside.
“One thing I remember thinking about was, ‘When will I get better so I can go play with everyone else again?’” Humure says. “I think that was the hard part, not being able to hang out with everyone else.”
The diagnosis
When Mukherjee arrived at her bedside, Humure was convinced she was dying. “I remember she was asking me, ‘What do you think you have?’ and I told her I thought I had AIDS,” she says. “I had been sick for a long time. I know that people who have AIDS don’t get better, and that’s probably what I had.”
AIDS was a distinct possibility for children who had survived the genocide, Mukherjee says. Some Rwandan orphans had tested HIV-positive after being raped during the war; others had been born positive after contracting the deadly virus in-utero through their mothers.
Still, Mukherjee says, “I told her I thought it was pretty unlikely, but that we would test her.”
They did, and the results were negative. That ruled out one disease, but there were any number of other potential culprits. Both infectious disease doctors, Mukherjee and Rich suspected Humure had tuberculosis, and that it had manifested in the bone — not an uncommon scenario for a child.
“We’ve seen people mistake TB of the soft tissue or bone for cancer, which is of course great news, because then you say, ‘Good news, not cancer!’” says Dr. Paul Farmer, a PIH co-founder and infectious disease expert who consulted on Humure’s case and remembers her as an upbeat, positive, kind-hearted kid. “You don’t have to amputate a limb for TB. It’s treatable without surgery. Once and a while, that’s not true, but very rarely.”
Rich and Mukherjee performed a biopsy to prove their mutual hunch and sent the sample to one of the few pathology labs in the country, King Faisal Hospital in Kigali. The results came back inconclusive. There were tons of white blood cells, indicating an infection, but no apparent sign of TB or cancer.
The PIH doctors did what any other clinician with few resources would: they made an educated guess. They placed Humure on a broad-spectrum antibiotic to treat her infection and another antibiotic to tackle what they suspected was TB. The latter involved daily injections, which Humure hated. She stuck with treatment for a month, every day crying and cringing when the orphanage doctor showed up with candy and her shot. But the medicine wasn’t helping.
Rich and Mukherjee decided to try another biopsy. This time, they sent a sample to a collaborating pathology lab in the United States and another to the University Teaching Hospital in Butare, Rwanda, on the opposite side of the country.
“Both came back as cancer,” Rich says.
Osteosarcoma, or bone cancer, to be exact. Oncology experts back in Boston recommended a workup for metastatic disease, amputation, and chemotherapy. But only the amputation was possible in Rwanda, as no form of cancer care existed at the time.
Even basic services were a luxury. “I would say the health system when we arrived in Rwanda in 2005 was extremely dysfunctional,” Rich says. Local clinics didn’t have medications or laboratories. District hospitals were dirty and disorganized. Nurses and doctors were rarely at the facilities. When they were, they left medication at patients’ bedsides, expecting them to follow often confusing instructions.
Cancer was like a local death sentence. If Humure had a chance of survival, Rich knew she would have to travel across the border to Goma, where there was marginally better care, or to the United States. But time was ticking. They needed to amputate her leg as soon as possible, conduct a thorough workup to see if her cancer had spread, and get her on chemotherapy.
“The type of chemo that she needed was very hard to give in Rwanda,” Rich says. “It can drop your blood counts very rapidly, and you may need platelet transfusions, which you can’t even do in Rwanda.
“We were also told that if she didn’t get the chemotherapy, just the amputation alone probably only gives her a 15 percent chance of survival,” Rich says. “With chemo, it would be the opposite. She would have an 85 percent chance of survival. So she really needed chemo to beat the odds here.”
Journey to a cure
Panicked by the news and skeptical that a U.S. connection would come through, Carr sent Humure to Ruhengeri Hospital for her amputation. One more time, the girl was packed into a car to travel several hours over bumpy roads. She vividly remembers the night she was told her diagnoses. Her bed was surrounded by doctors, some translating for others, as they spoke in hushed tones. The only way they could save her, they claimed, was to amputate her leg. They needed to act quickly. Tomorrow morning would be the operation. Did she consent?
It was a false choice, and 12-year-old Humure knew it. She would have to undergo the amputation, or she would die. She had no time to process anything.
Luckily, Humure was not alone. One of the orphanage mothers, Daphorosa Mukandori, had remained at her side throughout the whole ordeal, traveling to every hospital with her young charge. She was there, too, the morning of the amputation and accompanied her back to the orphanage, this time equipped with a wheelchair and crutches.
Weeks passed as Humure’s stitches healed. Her psyche, arguably, was scarred forever. She maneuvered as best she could with the crutches, but falls were a real possibility as she acquired a new center of balance. Most of the time, she was confined to her wheelchair.
“I think I was depressed, because I felt like that’s how my life was going to be,” she remembers. “I cried every time anyone looked at me, or thought someone was looking at me.”
Meanwhile, Mukherjee and Rich were racing to find someone who could provide free cancer care. They found an ally in Dr. David Ebb, a pediatric hematologist-oncologist at Massachusetts General Hospital in Boston. Together, they poured over test results and discovered another twist in Humure’s case: her cancer had spread.
Humure had a couple nodules in one lung that would have to be surgically removed before she began chemotherapy. Metastasis is never good news for cancer patients. In this case, though, “it was not the death sentence or the poor prognosis that you normally get with metastatic spread,” Rich says. If they got her to care quickly, even this could be addressed with a simple surgery and few repercussions.
Humure was cleared for travel five weeks later and was on a flight to Boston, accompanied by an American who had been volunteering at the orphanage. It was the girl’s first plane ride. First time surrounded by a language completely foreign to her. And first period living farther than a day’s drive from anyone she knew.
“Everything — from traffic, to buildings, to people, to being in the hospital — everything was so new,” she says. “I didn’t know how to react to it.”
Humure wasn’t afforded time to adapt either. Ebb and his MGH team started her on chemotherapy the day after she arrived. It helped that everyone was nice to her, she says, but she felt lonely. She picked up English words here and there, mostly through listening to staff and watching endless hours of TV. A music therapist brought by an acoustic guitar and taught her some chords. Soon, she was practicing Beatles and Tracy Chapman songs for the ward’s entertainment. PIH identified a homestay family, Cathy and Tony O’Flaherty, who welcomed her into their South Boston home once she was ready for outpatient chemo.
Then one day, MGH staff showed up with a prosthetic leg they’d cobbled together with spare parts found around the hospital. Still sick from chemo, Humure gingerly fit it onto her residual limb. Balancing on two feet for the first time in months, she realized she would someday walk again. It was just a glimpse of the future. But it was enough to propel her, one step at a time, forward. “It gives you hope,” she says. “It didn’t take all my problems away, but it made my life better.”
Small epiphanies
Her cancer in remission, Humure returned to Rwanda after 11 months, excited to be close to family and friends again. She learned to navigate on her prosthetic leg. PIH staff helped her enroll in the Sonrise boarding school in Ruhengeri. She dug into her studies and once again made top of her class. Rwinkwavu, where PIH and the Ministry of Health were reinvigorating the district hospital, became her second home on school holidays.
That’s where she met Dr. Sara Stulac, a pediatrician who’d been working in Rwinkwavu since 2005 and was struck by the bright, resilient girl with an insatiable appetite to learn. “She was really excited about her future,” she says. “At the same time, she had just gone through not one crazy thing, but five crazy things — more than anyone of us has ever gone through. And she was clearly ready to take it all on.” The doctor felt that this girl, who woke up at 4 a.m. to study, should get the best possible education.
PIH supporters agreed. In the fall of 2010, Humure arrived at the home of board members Lesley and Bill King in Greenwich, Conn. She spent her sophomore year studying in the local public high school. It was a steep learning curve, but nothing she couldn’t handle. Then, with the Kings’ help, she applied and won a full scholarship to attend Dana Hall School in Wellesley, Mass., where she completed her junior and senior years. She joined the swim team and the gospel choir. She made friends and took on leadership roles. And, as everyone hoped, she got the preparation she needed to attend a local university.
While at Dana Hall, Humure completed a senior project that left a lasting impression. For three weeks, she shadowed her prosthetist at Next Step Bionics & Prosthetics in Newton, Mass. With supervision, she designed a prosthetic socket from soup-to-nuts for a potential client. Although the socket never made prime time, it was excellent practice and sparked her interest in the field.
“Oh, my God, I need this!” Humure remembers thinking. “We have so many amputees in Rwanda. This could be an amazing thing to take” back home. Until then, she’d wanted to become an oncologist. Now she saw a different path that merged her life experiences, interests, and growing desire to “give back” and help others in Rwanda.
Humure continued to meet other amputees. That summer, she shadowed Dr. David Crandell, medical director of the amputee program at Spaulding Rehabilitation Hospital in Boston. Her timing was serendipitous. It was the fall of 2013, just months after the horrific Boston Marathon bombing in which three bystanders died and dozens others were injured. Many of the survivors who lost limbs were undergoing physical therapy there, and the recent high school graduate served as a mentor to many of them. She taught patients how to adapt to life as an amputee and to walk with and care for their prosthetics.
It was through these interactions, and others, that Humure started coming to terms with her own loss. There was no one transcending moment when things got better, more like a series of small epiphanies that gave her hope and inspiration — serving as a camp counselor for children with amputations, wearing a skirt that revealed her prosthetic, going horseback riding, and meeting other amputees with fulfilling careers and loving families.
“Accepting myself and everything that has happened to me, it took a long time,” Humure says. “It’s still a process. I feel strong, but I don’t feel strong enough. There are still things that make it hard. But you just live it.
“I didn’t meet a lot of amputees until I was older,” she says. “My life before required a lot of inner strength to really see beyond my amputation.”
Humure started at Wheaton College in the fall of 2013, and her world continued to open. The bucolic New England campus was just big enough to provide a range of opportunities, and just small enough that her professors knew her name. She took challenging courses and switched her major from chemistry to biology. She earned an internship with the MIT Media Lab, where she used innovative software to design an adjustable socket for above-the-knee amputees, like herself. Then she created a prototype in a senior biomechanics class with the help of 3-D printing technology. The best part of her invention, she says with a mischievous smile, is that she can test it on herself.
Big dreams
On a recent April afternoon, Humure and her friends walk across campus to grab lunch. The smell of fresh cedar chips blends with the senior’s coconut-scented perfume. She laughs — a bright, bubbling sound — and listens intently to her friends as they cross a footbridge to the cafeteria. The only sign of her amputation is a slight side-to-side rocking as she walks and a stiff gait up and down steps.
She exchanged this reality — of expansive green lawns, Wifi-enabled cafés, and late-night workouts with friends — for another when she returned to Rwanda in July. She and her home country have changed immensely these past seven years. PIH and the Ministry of Health have revolutionized the health care system nationwide, turning Rwanda into a case study in what can be achieved in a poor country with the right combination of political will, staff, stuff, space, and systems.
One notable change is PIH’s Butaro Cancer Center of Excellence. Opened in 2012, the center is four hours from Gisenyi, where Humure grew up, and serves hundreds of patients every year — some with the same type of cancer she conquered. Patients get a diagnosis, undergo surgery, and receive chemotherapy and follow-up appointments all on the same campus. Now, no one has to endure the roundabout search for care Humure once experienced half a lifetime ago.
Humure was an honored guest at the center’s opening. She sees, and has lived, what is possible in the face of tough medical challenges. She has been an amputee in Rwanda and the United States, experienced the disparities and hope each world represents, and believes she is the best person to bridge that gap.
“One of my biggest dreams is to open a prosthetic clinic for amputees in Rwanda, and it would be nice to do that with PIH,” says Humure, who graduated from Wheaton on May 20. “They have helped me a lot, and I believe in giving back.”
It’s hardly a far-fetched dream, especially in an organization of dreamers. Humure won the hearts of her PIH caregivers. They are proud to say they had a hand in her recovery, yet they are quick to point out the larger picture.
“We have saved a life, but we have also saved a life that’s going to impact thousands, if not millions, of people in her home country and around the world,” Mukherjee says. “This is why we feel that the story of the one person is so important.”
To learn more about Partners In Health, click here.
Multimedia Credits…
Videography, Photography (USA)
Zack DeClerck / Partners In HealthVideography (Rwanda)
Cecille Joan Avila / Partners In HealthGraphic Design
John Ra / Partners In HealthCourtesy Photos
Claudine HumureDrone Footage
CHARIS Rwanda
