When Joseph Dearani, M.D., and colleagues in the Division of Cardiovascular Surgery at Mayo Clinic started an Ebstein's Anomaly -- Mayo Clinic Facebook page, their goal was to simply share information about the rare heart defect. They posted videos of Dr. Dearani talking about the condition and of the surgical procedure to repair it (he's done more than 1,000 such surgeries). They never expected some of the page's regulars to take things a step further create their own Facebook group to share their experiences with Dr. Dearani and the team. But they did just that. Two groups, in fact.
The private groups provide a place for people who have Ebstein's anomaly (and those who love them) to "discuss their fears and hopes and share information about treatments." And share their successes. That, Dr. Dearani tells us, is exactly what's been happening. "It's been remarkable," he says.
One of the groups' most active members is someone we've written about before: Lola Montilla. The now-healthy ninth grader has written a new book about her experience. And she helped get a new law passed in her homeland of Puerto Rico that requires all newborns to be screened for heart conditions. "The governor of Puerto Rico actually signed it into law the same day as my book signing, so I was running between the House of Representatives and the book store," Lola tells us. "It was a crazy day." (Indeed.)
None of it would have happened, Lola says, without Dr. Dearani. "He saved my life," she says. And that's why she presented a special gift to Dr. Dearani during her recent checkup -- a framed picture of her family with the Governor of Puerto Rico and the pen used to sign the law into effect. Lola says the gift caught Dr. Dearani a bit off-guard. "He was just in shock," she says. "I remember him saying, 'I'm so overwhelmed right now.'"
Dr. Dearani tells us it really shouldn't have surprised him. "I've been so impressed by (Lola) from the beginning," he says. "When you meet her for the first time, you know right away she's unique and that she's going to make a difference. Here's someone who's had the misfortune of having a congenital heart problem but who has turned it into something so positive -- not just for her, but for so many other people. How can you not love that?"
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