How Parents And The Internet Transformed Clubfoot Treatment : Shots - Health News Clubfoot is a common birth defect that can make walking difficult. It used to be treated with surgery, which could have serious side effects, but a simple nonsurgical solution is now the norm. It took years of pushing by parents for that treatment to become accepted.
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How Parents And The Internet Transformed Clubfoot Treatment

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How Parents And The Internet Transformed Clubfoot Treatment

How Parents And The Internet Transformed Clubfoot Treatment

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Another case when less may well be more is the treatment for clubfoot. That's a severe, inward twisting of the feet, which makes it difficult to walk. Just a decade ago, most babies born with clubfoot had major surgery, which could cause a lifetime of chronic pain.

Now, few get surgery, thanks to a simple treatment that is completely noninvasive. Jenny Gold has the story.

JENNY GOLD, BYLINE: Mary Snyder found out her daughter had clubfoot at her 19-week ultrasound. Both of Alice's feet were completely turned in, forming the twisted U-shape typical of clubfoot.

MARY SNYDER: It was terrifying. I mean, even thinking back to it, 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 seen them when they're born.

GOLD: But looking at the quiet kindergartner who loves soccer and swimming today, you'd never know.

ALICE SNYDER: I'm 6, and my name is Alice Snyder.

GOLD: And that's thanks to Dr. John Herzenberg, an orthopedic surgeon at Sinai Hospital, in Baltimore.

DR. JOHN HERZENBERG: Well, let's roll up your pants and take a look at you walking, please. Her feet are turned out nicely, and she's walking heel-toe. Can you walk on your tippy toes now?

GOLD: Alice has never had to have surgery. Instead, she was given the Ponseti Method - a noninvasive and cheaper alternative. When Alice was just 8 days old, Dr. Herzenberg began applying a series of casts, to slowly turn her feet out in a very particular way. Then, she started wearing a special set of boots connected by a bar, at night.

HERZENBERG: In the past, before I learned about the Ponseti Method, guaranteed, I would've had to - literally - do a surgical operation to take apart and put back together the entire foot.

GOLD: That surgery usually had to be repeated several times, causing a buildup of scar tissue that can lead to arthritis and pain. The Ponseti Method, on the other hand, is pretty much painless, with just a small incision to clip a tendon. And most kids easily adapt to the boots because they start wearing them so early.

The method was developed by Dr. Ignacio Ponseti at the University of Iowa, in the 1950s. He spent his career tirelessly trying to get other doctors to accept it. He died in 2009. Here's Dr. Herzenberg again.

HERZENBERG: People, you know, were just 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 drumbeats of the people who were in favor of surgery.

GOLD: Surgeons are trained to operate, explains Herzenberg, and usually that's the way they make money. The Ponseti Method brings in a lot less for orthopedists. So for about 50 years, the technique mostly stayed in Iowa. But then, something new came along - the Internet.

HERZENBERG: Clubfoot is a real prototype for how the Internet has changed medicine and how parents have been the driving force, in many ways.

GOLD: Jennifer Trevillian was one of those parents. When her daughter was born with clubfoot in 2000, she started researching the condition on her new dial-up connection. There wasn't much. But she did find a few other parents talking about another option on iVillage, and a Yahoo support group called NoSurgery4ClubFoot. A few days later, she was on her way from Michigan to Iowa, to see Dr. Ponseti.

JENNIFER TREVILLIAN: 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.

GOLD: Trevillian joined the small but growing group of parents evangelizing about the Ponseti Method online.

TREVILLIAN: When you find good treatment, you become passionate about helping other families who are in the same situation.

GOLD: Trevillian built a few websites herself, telling her daughter's story; and she stayed active on the fast-growing Yahoo group. Other parents started traveling long distances to find a Ponseti practitioner.

TREVILLIAN: 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.

GOLD: And compelled orthopedists to learn how to do it. Today, the nonsurgical method is almost always the treatment of choice for clubfoot, and it's recommended by the American Academy of Orthopaedic Surgeons. It's important to find an expert at the technique because if it's done wrong, the child could end up needing surgery anyway. But when done correctly, 95 percent of kids born with clubfoot will never need a major surgery.

For NPR News, I'm Jenny Gold.

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