Fuente: http://www.nytimes.com/2011/11/02/giving/charity-helps-children-with-clubfoot-without-surgery.html?pagewanted=all
Finding Inspiration in a Doctor’s Legacy
By BARRY MEIER
Published: November 1, 2011
MY morning sprint through the pages of this newspaper typically goes like this: the front page, the corrections, the sports section (during baseball season) and the obituaries.
Stephen Mally for The New York Times
A 5K race for a clubfoot charity included Trista Thompson, 6, once a patient. More Photos »
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Two years ago, a photograph on the obituary page stopped me cold. It showed what looked like a display of talismans, objects that resembled “milagros,” the tiny tin replicas of legs, arms and other body parts that supplicants in Mexico and Central America pin to religious statues in the hope of curing a loved one.
These were medical tools, though, miniature plaster casts used to treat infants born with clubfoot, a crippling birth defect. The obituary, beautifully written by my colleague Douglas Martin, recounted the life of Dr. Ignacio Ponseti, a Spanish-born orthopedic expert who had created a nonsurgical cure for clubfoot.
As a reporter covering medicine, I often see its disheartening sides: overhyped drugs, “breakthrough” procedures that prove disastrous and the consequences that the financial dance between doctors and industry can have on patients.
I have also encountered heroes, and Dr. Ponseti soon joined them, his life a testament to the value of service and the power of simplicity. It made me think about what I could do to help make things a bit better.
Bear with me, though, because this is a confession, not a shoulder pat.
Clubfoot, which affects about 200,000 infants a year, is a horribly disabling birth defect, one that can doom a child born in a poor country to a marginal life. In the condition, one or both feet are turned inward and down, forcing afflicted people to walk clumsily on the sides of their feet.
The cure developed by Dr. Ponseti in the 1950s relies on physical manipulation. In each step of the treatment, a child’s clubfoot is stretched and turned slightly outward, and a hip-to-foot plaster cast, like the ones shown in the photograph, is then applied. After about five weeks, the foot is remolded; a child then wears a brace for a few years while bones mature.
Dr. Ponseti’s story was even more compelling because the medical establishment had ignored him, not just for a few years but for five decades. Surgery remained the treatment of choice, though it was performed largely only in wealthier countries and could leave a patient with a limp.
As Dr. Ponseti put it, surgeons love “their little knives.” The parents of children cured using his technique helped change things about a decade ago by taking to the Internet to spread the word. And it even gets better: the Ponseti method, as it is known, can be taught to nondoctors, making it a treatment that can be readily transferred anywhere in the world.
As I finished the physician’s obituary, my head was spinning. In 2006, three years before the doctor’s death at age 95, the Ponseti International Association was created at the University of Iowa, where Dr. Ponseti had practiced. Its mission is simple — to train doctors and health care workers in the Ponseti method.
So I wondered, how could I help? How much money should I donate? Could I learn the technique? And if so, where would I go? For weeks, such thoughts and fantasies kept rolling around. Then, as can happen with our better instincts, they disappeared beneath the immediate demands of family, work and self.
Now, fast-forward to this fall, around the start of the Jewish New Year. An editor asked me, or so I thought, what I was doing for “forgiving.” I thought it was a reference to the holidays, then realized it was invitation to contribute to this section, Giving.
I immediately though of Dr. Ponseti, and my enthusiasm and regrets about him welled up. Here was a chance to write about the philanthropic legacy of his work.
That story is also an inspiring one, filled with people, including disciples of Dr. Ponseti, who are training hundreds of medical professionals in his technique. But the philanthropic support for that effort, much like the fate that befell the Ponseti method for so long, remains very much in the shadows.
In recent years, the Ponseti International Association has received only about $350,000 annually, with $250,000 of that sum coming from a couple in Minneapolis, Robert and Molly Whitmore. (By comparison, the Smile Train, a charity that works to treat another common birth defect, cleft palate, received $102 million in contributions and grants in 2009 and has celebrity supporters like Christie Brinkley, Tom Brokaw and Helena Bonham Carter.)
Mr. Whitmore, the chief technology officer of Seagate, a maker of computer hardware, said he and his wife were inspired to get involved by his father, an orthopedic specialist who had studied under Dr. Ponseti.
Since his retirement in 2006, Dr. William Whitmore, now 79, has traveled to Greece, Rwanda and the Philippines to train people in the Ponseti method.
“The thing that floored us was my dad,” Mr. Whitmore said. “It is a perfect thing to eradicate clubfoot, a terrible deformity, in such an inexpensive, low-tech way.”
Mr. Whitmore said he had also tried to help the organization with his business expertise, helping it to devise a fund-raising plan. It hasn’t been easy, he added, because Dr. Ponseti, while he was alive, was more interested in research than promoting his work. That role has fallen to his protégé, Dr. Jose Morcuende, who is now the chief medical officer of the Ponseti International Association.
Dr. Morcuende said the organization’s program was growing. Discussions are under way to start a training program throughout Mexico, and similar efforts have started or are about to start in the Philippines, Romania and India.
The organization’s vision, Dr. Morcuende explained, is to create a cadre of trained doctors and health care workers in every country, a permanent medical infrastructure to treat the 200,000 new cases of clubfoot that will occur every year.
“We need about 4,000 to 5,000 good, well-trained people,” he said. Currently, that group stands about 1,500 strong and he estimates that it will take seven to 10 years and about $20 million to bring it to full force.
Some children with clubfoot will continue to require surgery. But Dr. Morcuende said studies have indicated that the Ponseti method works in up to 98 percent of cases, though it needs to be performed precisely and followed up rigorously to prevent a relapse. By medical standards, such success is impressive and some of Dr. Ponseti’s disciples have found that the technique has been used on older children, including some who were teenagers.
A doctor is needed to perform a minor procedure after the work of manipulating and casting the foot has finished. So as I spoke to Dr. Morcuende, I worked our conversation around to the issue about which I had obsessed when reading his mentor’s obituary: Could anyone be trained in the Ponseti method?
No, was his answer. One needed to understand the foot’s complex anatomy, and so physical therapists or hospital workers skilled in making casts are best suited for training.
I was a little disappointed. But that’s O.K. There is always writing and donating money. And that’s good, because those are things I can do.
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