Two days before surgery to correct her clubfeet, Zawadi Rajabu, 5, sat in New Hope with Taylor Wiley, 4, and sang as Taylor’s sister, Isabelle, 3, tried to join them.
Kyndell Harkness, Star Tribune
Jan. 5, 2008: Who could say no to 5-year-old Zawadi Rajabu?
- Article by: JOSEPHINE MARCOTTY
- Star Tribune
- July 8, 2008 - 8:11 PM
Millions of babies are born with deformities. What caused this child to be noticed by those who could change her fate? Her deep brown eyes? Her irrepressible spirit?
One out of a thousand children is born with a clubbed foot. Zawadi has two. They twist inward and down, hanging off the back sides of the 5-year-old's ankles like useless flippers. When she runs -- which she does often and with abandon -- it is on thick callouses that have grown on the ends of her leg bones. But, like a stilt-walker, if she stops, she falls over.
In Zawadi's native Tanzania, such deformities are viewed as a curse, likely to destine her to life as a beggar.
But that was before Iowans Tom and Polly Wiley noticed her. That's when serendipity, good hearts and medical know-how began to propel Zawadi toward Minnesota and a different destiny altogether.
"She has these huge brown eyes," explained Tom Wiley, an Iowa restaurant owner with two little girls of his own, ages 3 and 4. "It's hard not to fall in love with her."
He and his wife were in Tanzania last January on their first volunteer trip with Siouxland Tanzania Educational and Medical Missionaries (STEMM), a Christian mission based in Sioux City. STEMM volunteers were putting in a concrete floor at Zawadi's preschool, run by a church in one of the poorest areas around Arusha. That's when the Wileys noticed Zawadi's odd way of walking.
"She didn't look sad or desperate. She had this penetrating look," Tom Wiley said. They met dozens of children, but this little girl, about the same age as their daughters with ragged clothes and a sunbeam smile, captivated them.
They took her to Dr. Steve Meyer, the orthopedic surgeon who heads STEMM and goes to Tanzania twice a year to do corrective surgeries for children. "I love doing clubfoot surgery over there," Meyer said. "You are changing someone's life forever."
But despite his efforts, in that African country fewer than 1 percent of children born with the birth defect are treated. The rest face a lifetime of poverty, of being viewed as cursed. Zawadi's father walked out on his family the day she was born, leaving Zawadi's mother as the sole support for her three children, Meyer said.
Sofia Saidi said last week through an interpreter that she accepts that God made her daughter Zawadi the way she is. Still, her greatest wish has always been for Zawadi to have a normal life, to go to school, to be independent and to able to take care of herself.
But the day the Wileys brought her to Meyer he took one look at her feet and knew there was nothing he could do for her. "It was such a profound case," he said.
Which child to help?
Saying no is the most difficult part of Meyer's job.
He founded STEMM, which sends 800 Tanzanian kids to school each year, and is raising money for a $1.2 million orphanage for children infected with HIV. It relies on donations from regular Iowans -- farmers, small-business owners, grandparents and housewives.
He explained his dilemma: "Do you spend a lot of money saving one kid or a lot of money helping a lot of kids?"
But there was something about Zawadi that Meyer couldn't shake. And there was something about the Wileys that made it hard to say no.
So when Meyer returned to Tanzania in July, he took X-rays of Zawadi's feet. Back in Iowa, he sent them to surgeons he knew, but no one responded.
That's when he turned to Google.
Meyer knew there was a large Tanzanian community in Minneapolis. He knew there also was a vibrant medical community. So one day in August he typed in search words: "physician," "Minneapolis" and, most crucial of all, "Ilizarov."
In the United States and other industrialized countries, infants born with clubfoot get a series of casts that straighten the soft bones in their feet before they start walking.
In Tanzania, Meyer said, there are surgical techniques he can use to repair less severe cases in older children. But Zawadi needed something far more complex -- a procedure invented in the 1950s by Siberian surgeon Gavriil Ilizarov. It consists of a series steel rings with struts called fixators that are surgically attached to and through the bones.
Over months of pain and daily adjustments, they gradually stretch the skin and the nerves, forcing the feet into the correct position. It's like orthodontia for the feet.
But no one in Africa could do it.
Physician. Minneapolis. Ilizarov.
A match popped onto Meyer's computer screen: Dr. Mark Dahl, Gillette Children's Specialty Healthcare, St. Paul. A specialist in complex bone deformities, Dahl was one of the few surgeons in the country trained to fix Zawadi's feet.
"I made a cold call to him on a Wednesday in September," Meyer said. "We talked. The bottom line is he said, 'Absolutely, I'll make sure it happens.'"
Last week, Dahl shrugged off questions about why he took the case. It's obvious, he said. "In my hands and at Gillette, we could make a huge difference for this kid," he said.
With pictures of Zawadi in hand, Dahl paid a visit to the office of Gillette's chief executive officer to ask for a favor.
Like all hospitals, Gillette Children's Specialty Healthcare, which specializes in children with disabilities, provides charity care. At Gillette, it totals about $1 million a year, mostly in discounts to patients who have little or no health insurance. But two or three times a year they get kids from overseas, such as Zawadi, where it's all or nothing.
"We tend to get them in this season, around Christmas," said chief financial officer Jim Haddican. "Usually they are the cases you could never say no to."
In Zawadi's case, Gillette said yes to the tune of $100,000, the estimated cost of the surgery, which the hospital and Dahl provided for free.
One more obstacle
The only thing left separating Sofia Saidi's daughter from help was an airline ticket -- something a poor, single mother in Tanzania could never provide.
That's when Operation Zawadi, as the Wileys called it, really took off. Through STEMM, friends and business contacts, the Wileys raised $5,000. Dr. Jessica Baitani, a Tanzanian physician living in New Hope, invited Zawadi and her mother to stay with her and her husband.
On a dark November day just after Thanksgiving, Zawadi, who had spent all of her five years in the hot, dusty slums outside Arusha, had now seen her first snow. She sat in Dahl's Woodbury office and placed her twisted, useless feet into the hands of one of the few surgeons in the United States who knew how to fix them.
Zawadi's mother and the Wileys agree on why it all came together. It was God, said the Muslim mother and the Christian couple.
A rare procedure
At 7:30 a.m. on Dec. 12, Zawadi lay still as a doll under the white lights above an operating table at Gillette.
Her feet, as always, were at right angles to her ankles. Dahl, the surgical nurses and a resident clustered around the foot of the table wielding tools that seemed to belong more in a mechanic's shop than a surgical suite. There were drills, wrenches and bolts lined up next to scalpels and needles.
He slipped a black metal ring around her right leg and eyed it critically. Once he got it perpendicular to her leg, he drilled two metal pins through her skin and into the bone, attaching them to the ring so it was fixed solidly around her leg.
"Everything is based off the tibia," he said. The external fixators invented by Ilizarov were intended to straighten and lengthen deformed bones, not fix clubfeet, Dahl explained. But Dahl, who once spent a miserable February in Siberia learning the technique from Ilizarov himself, has successfully used it four or five times on children like Zawadi.
Still, he said, gently feeling for her foot bones with his thumbs, he has to figure it out as he goes along.
"It would be naive and grandiose to think we can make this perfect," he said.
During the five-hour surgery he attached a ring to each leg, and two on each foot, drilling wires right through her bones in some spots to anchor them securely in place. Ilizarov, he said, used to use bicycle spokes. He bolted six adjustable struts to each ring, 24 on each leg, and ran wires through her tiny toes to line them up with her feet.
And when he was done, it was just the beginning.
Every day, each of the 24 struts on the rings must be tightened, one millimeter at a time, four times day.
In about two months, the rings will be parallel and Zawadi's feet will be straight. If it works, she will walk normally, Dahl said. Once the struts come off in about four months -- about the time the visas run out -- she will still need braces to stop her feet from reverting to their original form. STEMM will be in charge of making sure she gets them.
But the day after surgery, none of that was on Zawadi's mind. She flew down the hallways of Gillette, propelling herself in a wheelchair on her way to her first day of therapy. Her legs and their rings were covered by blankets, but in her mind she was running.
"Look," she cried in Swahili to the nurses, her mother and the interpreter trailing behind. "My legs are straight. My legs are straight."
Josephine Marcotty • 612-673-7394
© 2016 Star Tribune