Good Reads: Before and After by Brian F. Mullaney, Co-Founder of Smile Train and WonderWork.
Before and After – Chapter 19: Jean and Vestine Nirere
At the same time that we were spreading awareness for our work to cure blindness and scaling up our numbers of surgeries around the world, we were also learning everything we could about the second medical problem we had pledged to eradicate: clubfoot.
Like cataracts, clubfoot simply isn’t a problem in the West anymore. Although in the U.S. approximately 5,000 babies are born with this birth defect each year, these children are immediately and effectively treated. As a result, you’ll never see a child walking around your town or city with an untreated clubfoot; it simply wouldn’t happen. In the developing world, however, it’s a different matter. In our years traveling for Smile Train and now WonderWork, DeLois and I had often seen children with untreated clubfeet begging in the streets. Sadly, if you’re born with this defect in countries such as India or Africa, treatment is often too expensive, or only available in the urban areas, putting help far beyond reach for so many patients, particularly those living in rural areas.
The problem that leads to clubfoot starts in the womb, about halfway through gestation: instead of growing straight, one or both feet begin to point down and twist in at the ankle. By the time the baby is born, the foot or feet have rotated 180 degrees or more. If you picture two golf clubs turning inward to face each other then you’ll have something like the correct image.
Now imagine a baby whose clubfoot goes untreated. The first year, she learns to crawl, managing to get around on her hands and knees. Then, around the time she’s supposed to be taking their first steps, she tries to get up on her feet but tumbles back down again. As time goes on, that child, who only wants to be able to go outside and run around with her siblings and friends, has to stay at home, confined. Eventually, she may learn to walk on the sides of her ankles instead of the soles of her feet, but when she does, it will cause her excruciating pain. In the developing world, children with clubfeet rarely attend school or grow up to find adequate employment and they’re often seen as a cause of shame for a family. When parents are unaware that this is a birth defect and it can be fixed, they assume that God has cursed them, that they did something wrong in a former life, and that somehow they are to blame
Clubfoot is an extremely disabling defect that’s nearly as old as humankind: Hippocrates observed the condition in 400 B.C. and King Tutankhamun’s remains show that he had suffered his entire life with clubfoot. But to this day, no one is certain what causes it—whether environmental or congenital factors or a combination of the two. What we do know is that in the developing world, the vast majority of children born with clubfoot suffer their entire lives because they don’t have $250 to pay for surgery. That’s all it costs: $250 to fix a defect that affects around two million children globally.
As with clefts and cataracts, however, the cure for clubfoot already exists and it’s very easy to deliver even in the poorest countries in the world. It’s called the Ponseti technique, and it’s named for the Spanish-American doctor, Ignacio Ponseti, who developed it in the 1960s. The Ponseti technique requires no surgery, just a series of casts that are changed once a week. These casts, like braces on teeth, can gradually straighten out even the most twisted feet, a process that usually takes about six weeks. After the feet are straightened, the child needs to wear special braces at night to keep the feet from becoming misaligned. But if the technique is administered correctly, the majority of children end up with perfectly straight feet that will stay straight for the rest of their lives. It’s an extraordinarily effective and gentle treatment.
On my travels to visit clubfoot clinics around the world, I often think of Dr. Ponseti. Although he passed away in 2009 at the age of ninety-five, he lives on in the technique that he pioneered and that bears his name. He never became a household name and he didn’t win the Nobel Prize; in fact, for most of his life, hardly anyone knew about him and his work. But thanks to him, every year, thousands of children are cured of their clubfeet, and he’s certainly a hero to me and to all of us at WonderWork.
We first began funding treatment for children with clubfeet in 2012, and since then we’ve been able to visit partner hospitals across India, Nepal, Ethiopia, and Tanzania. One in particular trip stands out in my memory: to Rwanda to visit our partner doctors and patients in the spring of 2015. Despite the legacy of the genocide of the 1990s, Rwanda has made great strides in addressing the country’s clubfoot problem, educating people about the defect and the fact that it can be repaired. There are a number of clubfoot clinics in the capital of Kigali, and with additional funding from WonderWork, they have been able to increase their number of surgeries even further.
On this particular trip, after DeLois and I had spent time visiting clinics in Kigali, we drove two hours north to meet with a patient and his family in one of the outlying villages. The terrain beyond Kigali is dense and tropical, with dark green hillsides dotted with little homes, made from sheets of aluminum, bricks, and cement blocks, extremely modest but brightly painted and cared for. As we drove along rutted roads, we saw people were using bicycles to transport goods to market, balancing potatoes and lettuces on seats and handlebars, and then pushing the bikes along. We saw little kids with buckets bigger than their heads walking along the highways, hauling water from nearby wells. Our guide reminded us that although the local government has done an impressive job of addressing the clubfoot problem in cities—connecting with patients via TV, newspaper, and radio advertising campaigns—it can be much harder to access patients in rural areas, where many people don’t have running water, let alone access to any kind of media.
After driving for two hours, we arrived at the small village of Nyakinama. As we pulled up in our van, Jean and Vestine Nirere, and their two-year-old son, James, were waiting for us outside their home. Vestine, the mother, was proudly holding her son up for us to see. The little boy was still undergoing treatment, so his newly straightened feet were encased in black boots held together with a metal bar to keep them in the correct position.
INSERT PHOTO: JeanVestineJames
Jean and Vestine gestured to us to join them inside their home. We ducked through the doorway of a small hut with a rusted tin roof and mud walls. As we sat down at a small table with two chairs, our translator explained that the father, Jean, wanted to tell us a story.
“It began the day our son James was born,” Jean started, his voice soft and solemn. “He was born with both his feet horribly twisted.”
As Jean spoke, he held his wife’s hand. Vestine looked nervous and concerned.
“Right away, I knew it was my wife’s fault,” Jean told us. “My wife’s mother has crooked feet. It was a family curse, and she had destroyed our son’s future. I told her to take her baby and leave my house, and to never, never come back!”
Vestine had begged and pleaded with Jean to reconsider. She threw herself at his feet, sobbing. But Jean would not be swayed.
“Get out!” he told her. “And take that thing with you.”
Vestine did. Less than an hour after giving birth, she got up and got dressed. The midwife carefully wrapped up her newborn in swaddling. Then Vestine walked out the door with her baby on her back, into the night.
Two months later, Vestine’s brother came to see Jean. The brother gently explained that Vestine had been living with her parents. One day, she’d heard a radio advertisement, and had learned that there was a clinic where she could take James to be treated. Clubfoot wasn’t a curse but a medical condition that could easily be cured. Baby James’ was already receiving treatment. “Your son goes to the hospital every week,” the brother told Jean. “His feet are almost straight already.”
Jean was shocked—and deeply ashamed. He sat with his head in his hands, without saying a word, tears in his eyes. After a few minutes, the brother-in-law grew impatient.
“What should I tell my sister?” he demanded, getting up to leave.
“Ask her to please come home,” Jean said. “Tell her I am sorry.”
As Jean told us this part of the story, he reached out and put his arm around his wife, who was fighting back tears herself.
“Thankfully my wife did come home,” Jean told us. “Since then, I have apologized to her, again and again. I made such a big mistake. I begged her to forgive me.”
You could tell by her smile that Vestine had.
“I want to thank you for helping us,” Jean said. “You didn’t just save one life—you saved all three of us.”
Good Reads: Before and After by Brian F. Mullaney, Co-Founder of Smile Train and WonderWork.