Clubfoot is a common birth defect, affecting 1 in every 1,000 newborns, and is characterized by feet that turn inward, forming a twisted U-shape.
Mary Synder was devastated to learn at her 19 week ultrasound that her unborn baby had clubfoot.
"It was terrifying," said Synder. "It was very emotional. We did a lot of testing and everything to make sure she was going to be OK, but you never really know until you see them when they're born."
Until a decade ago, 90 percent of babies born with clubfoot were treated with surgery that had to be done several times. This would lead to a buildup of scar tissue that could bring a lifetime of pain, arthritis, stiffness, and medical bills. A noninvasive solution along with an Internet campaign by parents changed treatment courses and outcomes.
Alice is now 6 and is seen every year by Dr. John Herzenberg, an orthopedic surgeon at Sinai Hospital in Baltimore. Alice follows all of his instructions: walk back and forth, stand on her tippy toes, and walk with her feet turned out like a duck.
For those who aren't familiar with clubfoot, Alice's feet look perfectly normal. They can turn out just like anyone who wasn't born with clubfoot.
Dr. Herzenberg used the Ponseti Method, which involves a series of full-leg casts that slowly turn out the patient's feet. Casts are changed every three to eight weeks. When it is time for the final cast, which stays on three weeks, a small incision is made above the Achilles tendon. The child will then wear at night special boots that are connected by a bar to ensure the feet stay in the right position.
This method was developed by Dr. Ignacio Ponseti at the University of Iowa in the 1950's when the Spanish physician discovered that an infant's feet could be trained to turn the correct way.
"In the past, before I learned Ponseti, guaranteed I would literally have had to do a surgical operation to take apart and pull together the entire foot," said Dr. Herzenberg.
The Ponseti method is almost painless and patients who have this treatment have a complete recovery with no long-term discomfort. It also costs less than surgery. Ponseti would spend 50 years trying to get other physicians to adopt this method, but would be largely unsuccessful.
"People were falling over themselves to do fancy invasive surgery, and this one strange old guy who speaks softly with a Spanish accent in Iowa was getting sort of ignored by the drumbeat of people who were in favor of surgery," said Dr. Herzenberg, who is one of the top physicians to see for this procedure.
Traditionally, surgeons are trained to operate, and that's how they can make more money. For orthopedists, the Ponseti method brings in less money. So for 50 years the Ponseti method stayed in Iowa.
But the internet changed that. Jennifer Trevillian's daughter was born with clubfoot in 2000 and doctors said surgery was the only course of action. "He started talking about her pending surgery before he physically examined her foot," Trevillian recalls.
Trevillian wasn't going to have any surgery for her daughter. On her new dial-up connection, she began to research the condition. Initially, she didn't find much, but she stumbled upon a support group on iVillage called NoSurgery4ClubFoot. Several days later she and her daughter traveled from Chatham, Michigan to Iowa to see Dr. Ponseti.
"In the amount of time that we would have just been waiting for her to be big enough to tolerate the anesthesia for the reconstructive surgery she was supposed to have, Dr. Ponseti completely corrected her foot," Trevillian said.
Trevillian became a proponent of the Ponseti method, setting up websites with her daughter's story, staying active on support groups, and spreading the message. Parents began to listen, and would travel long distances to find doctors who would perform the treatment.
"The way that the clubfoot treatment pendulum has swung is really a classic example of supply and demand- because once parents found out about it, they demanded it for their kids, and it really forced the medical industry to rethink the Ponseti method," said Trevillian.
Herzenberg agrees with Trevillian's statement. "Clubfoot is a real prototype for how the Internet has changed medicine and how parents have been the driving force in many ways," he says.
Now the Ponseti method is the treatment option of choice by physicians for clubfoot and is recommended by the American Academy of Orthopedic Surgeons. When done properly, 97 percent of children will never need surgery.
Reference: NPR
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