University of Nebraska-Lincoln
In Ethiopia, scoliosis twists spines to a life-threatening degree. Only one doctor can help. But he can’t sav e everyone.
By Faiz Siddiqui
ADDIS ABABA, Ethiopia – It’s a late-spring morning in Ethiopia’s bustling capital as a dozen kids flock to the courtyard of their open-air school. Someone scoops up a crushed water bottle and suddenly a frenzied soccer game erupts before the bell rings.
On the balcony above, a shy 7-year-old boy pokes his head through the arms of a rusty guard railing. The tiny third-grader, with puffy cheeks and missing front teeth, stares down as classmates twice his size furiously skitter the makeshift plastic ball across the asphalt.
Sisay Gudeta rises on his tiptoes, clenching the blue metal bars for a better view. His face is an expressionless mask amid the screams and early-morning laughter of his frolicking classmates. For a long time, his bulbous brown eyes fixate on the courtyard, on the game he loves more than anything. He’d be down there with them if he weren’t so worried about being pushed around. He desperately wants to run like his friends, to be free and fearless â€“ just like them. He says such things all the time.
For his mother, it’s a constant struggle, a constant challenge to try to explain the pyramid-shaped hump bulging beneath his green cotton sweater. The bump on his spine that he was born with. The one that gets bigger and bigger each year. The one they cannot afford to fix.
The one that could one day kill him.
“My friends hate me,” he tells her one day after school. “No one wants to play with me.”
In a gated compound on the other side of Addis Ababa, a clean-shaven New Yorker sifts through a sheaf of X-rays and medical documents, quietly sipping his afternoon cup of tea. He wears a plaid button-down with rolled up sleeves, round metal frames sliding down the bridge of his nose.
To his Ethiopian assistants, he is “Dr. Rick.” To his American office staff, he is simply “Rick.”
But to those who hobble into his clinic on afternoons like this, those in desperate need of life-saving spinal reconstructions, Richard M. Hodes, M.D., is something else. He’s their last hope.
Hodes, 61, operates the only known spine clinic in this city of 3.4 million, the capital of a country where the ailing and destitute are largely forgotten. Even at a mere 5-foot-3, 127 pounds, he’s bigger than most of his patients.
But he wasn’t always sure he would study medicine. Hodes graduated in 1975 from Vermont’s Middlebury College with a degree in geography. At the time, he wasn’t really interested in a job, so he painted houses and hitchhiked to California and eventually Alaska. While there, a part-time hospital job triggered a curiosity in medicine and led to full-time enrollment as a pre-med student at the University of Alaska. Eventually, he traveled to Bangladesh and South India.
“In Asia, I saw lots of very sick and deformed people, and decided that this is how I could use my medical skills,” said Hodes, who soon enrolled at the University of Rochester School of Medicine.
He received his medical degree in 1982, then began an internal medicine residency at Johns Hopkins University. After completing the residency, he embarked on a journey that would dramatically alter the trajectory of his life.
A man of strong Jewish faith, Hodes ventured to Ethiopia during the 1984 famine that led to hundreds of thousands of deaths, a horrific tragedy that thrust the country into the global spotlight. For the last two decades, he’s lived in Addis, evaluating patients whose spines, he says, are among the worst in the world.
“We’re sort of setting world records here,” says Hodes, who serves as Ethiopia’s medical director for the American Jewish Joint Distribution Committee.
People in this landlocked nation, in the northeast corner of a sprawling continent, are expected to die about 16 years earlier than Americans, according to the World Health Organization. And for citizens who, on average, live on less than $1,400 annually, a $20,000 spinal reconstruction is a hopeless proposition.
But these hump-backed children have a friend in Hodes.
He has provided free medical evaluations for 1,700 of them, while legally adopting five Ethiopian children himself. Helping victims of severe scoliosis and other illnesses long thought to be eradicated â€“ spinal tuberculosis and polio â€“ has long since become his life’s work.
But there’s a hitch: He cannot help everyone.
In a sense, he has to select those who will live. And those who will not.
In a sense, he has to play God.
When Sisay peels off his shirt, ribs visibly appear just beneath the skin. And there it is: a soccer-ball-sized bump protruding from his back. His mother admits that sometimes, when she sees the hump, she gasps.
The 42-year-old mother hasn’t told her son about the severity of his condition, and Sisay himself is a bit shocked when he sees photographs of his back. But he knows there’s an issue. Otherwise, why would he be â€“ at 7 â€“ just a shade over 3 feet tall?
“When he puts his clothes on, he feels bad because people can see his back,” the mother says. “If he goes to the field to play ball, they will not let him play because they think he is sick.”
For tens of thousands in Ethiopia, scoliosis twists spines to a life-threatening degree. Doctors there believe that similar conditions â€“ a result of malnutrition, a shortage of specialists, and a lack of early medical screenings â€“ exist in many poor countries. But they also say the condition seems to be more acute in Ethiopia.
In the US, for example, doctors routinely recommend back braces for any children with spinal curves greater than 25 degrees. Doctors often rely on surgery to correct spinal curves of greater than 45 degrees, according to the National Institutes of Health.
Scoliosis has curved Sisay’s spine 120 degrees, unheard of outside the developing world.
For this reason, he shares a common trait with many victims of congenital spine diseases in his country: a hood-shaped hump protrudes from his back, leaving his upper body constricted and underdeveloped on top of thin, stilt-like legs. If he doesn’t receive treatment, doctors say he’ll continue life with the lung capacity of a 7-year-old until the condition kills him, as early as age 14.
“He is such a beautiful child,” says the grandmother, Dangale. She sits in a corner rocking chair, knitting a white dress to sell at the nearby Merkato for less than a dollar. It will take three weeks to finish.
“After he got sick, I just felt like crying. I asked God what I did to do this to him,” the grandmother says.
The mother, who earns a dollar a day picking up trash on city streets, once carried her son up a 10,500-foot peak overlooking the city, believing that if no one else could, surely God would save her child. There, on Entoto Mountain, is where a mother journeyed to the most sacred site in the Ethiopian Orthodox tradition. At the summit, the mother cradled the sick child in her twig-like arms, bathing him in holy water.
Later that day, they returned to their tin-roof shack that lies in a back alley, in a densely populated neighborhood. The home is where the boy watches “Tom & Jerry” on a rickety television set with two channels.
He almost broke it once, trying to push a DVD of music videos he’d gotten from a neighbor into the screen. There was no slot for it.
“I don’t touch it,” he says of the television. “If I touch it, it will break. And if it breaks, I will not be happy.”
In their tin-roofed shack, a ray of light shines through a small hole in the plank door. Another shaft splashes their yellow cement walls from a ceiling skylight. On the wall a wooden placard reads: “Hulum Yalfal” — “Everything is temporary.”
One day after school, the boy tells his mother: “Take me to the hospital so I can run like my friends.”
For years, she has tried to do exactly that. But it was always the same â€“ the doctor said there was nothing they could do. Soon, she will try again.
On this late-May afternoon, Dr. Hodes is catching up after a three-week fundraising trip to America, where he stopped at Brandeis University to deliver the school’s commencement speech. To subsidize the spinal surgical costs, he tours the United States for two months a year, raising the money to pay for each operation. Over the years, he has raised several million himself, primarily via speeches to groups of private donors throughout the Northeast United States. But he hopes to one day open a spine center in Ethiopia that handles cases as extreme as the ones he routinely sees. He estimates the project will cost between $10 million and $20 million.
Now, he’s face-first in a pile of immigration papers, medical histories and fresh scans of his patients’ backs. On his X-rays, spinal curves of 120 and 240 degrees tend to look like roller-coaster tracks or musical instruments.
One day, a boy visited Hodes’ clinic with an almost serpentine curvature in his back, going “down, then up, then down again.” Hodes recalled his initial shock at learning the extent of Ethiopia’s spinal diseases. It’s common to see kids with warped backs hobbling up and down the road, or begging on street corners. Sometimes, healers in rural villages near the northern border try to flatten patients’ backs by pressing smoldering rocks to their skin.
“Even in the United States, with our very crazy health system, you can still manage to get spine surgery and correct it at a decent point,” he says. “I always thought the worst thing would be 180-degrees â€“ so that’s like a pancake folded on top of each other. But in fact, there’s a kid who has 240-degree scoliosis. His spine is like a saxophone.”
His surgical candidates are sent to Ghana, where Dr. Oheneba Boachie-Adjei, an orthopedic surgeon, leads the nonprofit Foundation of Orthopedics and Complex Spine in Accra, that country’s capital. The two doctors have teamed up to provide 300 surgeries over the years.
“If you leave these kids alone, you won’t see them as teenagers,” says Boachie-Adjei, Chief Emeritus of the Scoliosis Service at the Hospital for Special Surgery in New York.
The surgical treatment typically consists of several procedures â€“ an initial one to help straighten the spine, another that stretches it to promote normal growth, and a final one that surgically rebuilds the spine into a normal configuration.
Hodes knows he can’t heal everyone. So he tries to focus his resources on young patients with promise. Ideally, they’re younger than 25 and doing well in school. Ideally, someone like Sisay â€“ a 7-year-old who’s third in his class and dreams one day of being a pilot.
“I have criteria for this, but it’s very tough knowing that so many lives are in my hands,” he says. “I say a prayer asking God to help me in my work before sitting down to analyze these records.”
For Hodes, faith is the only way to come to grips with reality. After months of evaluating patients, diagnosing conditions, and reviewing X-rays, he has a decision to make: Of the 270 new patients this year, he can only arrange surgery for 60.
Today in his office, a diminutive 7-year-old boy’s scan prompted him to say: “We need to intervene.”
They awake in the pre-dawn hours of a chilly morning. Inside the home, Sisay slips his arms into a black, toddler-sized suit jacket held by his mother. He’s careful not to wake his sister, who sleeps on the floor below.
At 6:10 a.m., he jumps up and starts toward the door.
“Hold on,” his mother says, kneeling beside her daughter to say they’re leaving.
Outside, blue and white minibuses await in the Abonet Traffic Circle, about three blocks away.
The mother pulls her son into the crowded cabin of the first van. She digs $1.50 birr (about eight cents) out of her pocket for bus fare. Meanwhile, Sisay begins taking in the sights: “Lion! “Dog!” “Machina!” The boy doesn’t mind the bumpy ride. He rarely gets to leave the neighborhood.
And then, for a brief moment amid the confusion of a larger, busier bus stop, they become confused. The mother doesn’t know which bus to take next. She and her boy can’t risk boarding the wrong one. Didn’t she almost scream when she first heard of a doctor who offers spinal exams, and possibly life-saving surgery â€“ all for free?
But now she’s in a panic.
Finally, a driver points them in the right direction. Sisay steps on board the second bus with a packet of shortbread cookies in hand â€“ breakfast he bought at the food stand nearby. This time, the driver wants double the fare.
In the middle of a crowded street, Abonesh forks over the money.
She knows how many parents, desperately seeking care for their children, will be waiting outside the clinic on this chilly morning. She has no choice.
Inside his bedroom, Hodes naps. He arrived back home around 3 a.m. following a three-week fundraising tour along the U.S. East Coast.
On this morning, he wakes early. His assistants already have warned him that dozens of new patients will be waiting at the clinic â€“ 4.8 miles away.
By 7:15 a.m., mother and son are walking through the hospital’s tall blue gates. They’re the second family to arrive. For a moment, the stress is gone.
For Hodes, it’s only beginning.
He won’t arrive for several hours, but the 60 patients have begun pouring in. A man whose lifeless, twig-like left arm was broken and never treated 24 years ago, when a horse stepped on it. An uncle and nephew who drove 15 hours to have the 16-year-old’s massive knee tumor examined. A 24-year-old whose mangled spine leaves him unable to walk. They’re all waiting for one doctor, hoping the man in the white coat with a buzzcut and wireframes can work a miracle.
From his home, he slides into a private car. At 10:15 a.m. the car stops and his assistants climb out. Sixty patients wait in the parking lot.
He knows all about the boy. He’s seen the pictures. Heard from his volunteers how witty the kid can be.
The waist-high 7-year-old spots the doctor in the parking lot. He begins walking toward him. Their eyes meet.
Then, the boy stops. He stands in front of the doctor, silent, looking up.
The doctor leans down to eye-level.
“What’s your name?” he asks.
“Sisay Gudeta,” the boy responds.
“Are you the man who’s going to fix my back?”