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July 7th, 2015

Surgeon Sees the Fruits of His Labors Multiplied

By In the Loop

DrDearaniLola805When 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.)

DrDearniLola500None 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?"

How can you not also love the opportunity to share your comments and share this story with others? You'll find tools to do both here on the In the Loop blog.

Tags: Dr. Joseph Dearani, Ebstein's anomaly, Employee Stories, Practice story

Comment


Kevin Buchs
@buchs

Posts: 10
Joined: Feb 14, 2011
Posted by @buchs, Jul 7, 2015

Puerto Rico a country?


Angie
@angiehdz

Posts: 1
Joined: Jul 09, 2015
Posted by @angiehdz, Jul 16, 2015

HI Kevin Puerto Rico is a commonwealth of the United States puertorricans are born US citizens


Michelle39
@michelle39

Posts: 1
Joined: Feb 14, 2015
Posted by @michelle39, Jul 7, 2015

Thank you so much Dr D, you viewed my sons files in April 2011. Kieron Balfour, we are in Scotland. You were unable to attend at the time of his surgery, but if not for you my sons condition would have deteriorated further, and may not be here with me today. Kieron became very sick in January of 2012 and eventually got his surgery done in April of 2014. However Dr Pedro Del Nido attended during his surgery which was carried out by Mr Mark Danton at the Royal Hospital for Sick Children in, Glasgow, Scotland. Kieron is doing really well and is ready to celebrate his 16th birthday in 10 days time, a birthday that we thought he might never see. Really never had the chance to thank you so hope this finds you. Thank you so much for saving my sons life , I will never be able to thank you enough, god blessed us all when he created you.


UCONN
@uconn

Posts: 1
Joined: Sep 17, 2013
Posted by @uconn, Jul 17, 2015

Dr. Dearani performed OHS on me in 2012 because of Ebstein’s anomaly. The valve was considered severe, and I was actually sent to Dr. Dearani by my team at Mass General Hospital in Boston because of his expertise in operating on people with Ebstein’s. I am grateful every day for Dr. Dearani and my cardiologist, Dr. Warnes. They created the perfect team who made it possible for me to travel around the world. It was quality of life I wanted and I was granted my wish.

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