A few weeks ago Different Dream posted a story about Dr. Ignacio Ponseti, a gifted University of Iowa physician. He developed a non-invasive method for treating clubfoot now known as the Ponseti method. You can read more about him at the post, Dr. Ignacio Ponseti: Hero to Special Needs Families.

The Power of Parents in Changing Medical Treatment

But there’s a second horn to toot in this story. I was happy to hear NPR toot the power of special needs parents in a piece about how ordinary dads and moms revolutionized the treatment of clubfoot by championing the Ponseti method. Of course, the good doctor tried to publicize his treatment, as the radio article explained:

Ponseti spent the next 50 years tirelessly trying to get other doctors to accept it, but with little success. “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,” says Herzenberg, who is one of the foremost practitioners of the Ponseti method today.

In the 1990s, parents started talking about the method on the internet. Here’s how Jennifer Trevillian got involved after her daughter was born with club feet in 2000.

Trevillian joined the small but growing group of parents evangelizing about the Ponseti method online. She built a few websites telling her daughter’s story, and she stayed active on the fast-growing Yahoo group. Parents began following each other’s advice—choosing to abandon doctors who insisted on surgery and often traveling long distances to find a Ponseti practitioner. “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,” says Trevillian.

Now the Ponseti method is almost always the recommended treatment. When done correctly, 97 percent of kids born with clubfoot never need invasive surgery. To read the transcript or listen to the whole piece which includes links to more information, go to How Parents and the Internet Transformed Clubfoot Treatment.

Other Power of Parent Stories?

This is a great power of the parent story. But after rubbing elbows with special needs parents, I know many of you have some great stories to tell, too. Now’s your chance to share them. How have you helped transform treatment for your child? Or the attitudes of others? Or created a more inclusive environment? Tell your story in the box below!

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