Most 13-year-old girls wouldn't see having a scar down the middle of their chests as cool. Lola Montilla, however, is not your average 13-year-old girl. When she looks at the scar on her chest from the surgery she had at Mayo Clinic to repair the Ebstein’s anomaly heart defect she was born with, she says it serves as a reminder that what doesn't kill us does indeed make us stronger.
"I really, really like my scar," Lola says, from her home in Puerto Rico. "Every time I look at it, it makes me think, 'Wow, I really did go through this, and I'm now back here at home.'"
Her mom, Mari Serrano-Montilla, says she and her husband learned that Lola would be born with Ebstein’s anomaly -- a rare heart defect that causes blood to leak back through the tricuspid valve, forcing the heart to work much harder than normal -- late in her pregnancy. "Our doctors here in Puerto Rico said she might need surgery, but it was a matter of just seeing how much progress she made," she says.
Outside of not being able to participate in competitive sports in school or go on any of "the cool rides" when her family visited Disney World, Lola lived the first 12 years of her life without much complication or difficulty. But then, just before her 13th birthday, things began to change. "As soon as she started middle school, she started complaining that she was feeling really tired," Mari says. "She was exhausted. She was getting tired going up the stairs. These were things we'd never heard from her before."
Then she started turning blue.
Lola's doctors in Puerto Rico discovered that her heart had increased in size since her appointment the year before. "They said let's just keep watching her and see how things are going," Mari says. "She was feeling really out of breath, so they did put her on oxygen therapy 24 hours a day."
Then, one Friday afternoon, her phone rang. "Lola's doctor called me and said, 'You know what, I just came across this publication from Dr. Joseph Dearani at Mayo Clinic," Mari says. In that publication, Dr. Dearani had written about an innovative cone reconstructive procedure for the tricuspid valve that Lola's doctor in Puerto Rico said might be just "what we have been waiting for."
From there, the family began making arrangements to travel to Mayo Clinic in Rochester. As they prepared for the trip, Lola came to her parents with a request. "She said, 'I know you guys want to keep all of this a secret, and I know you want to protect me, but I need people to know what's going on because I don't want people making up stories. I want people to know exactly what's going on, and that I'm going to be fine,'" Mari recounts.
That's when Team Lola began. After hearing his daughter's words, Lola's father, a veteran of the television industry, drew up a heart-shaped logo surrounded by the words: "Stay Strong. Stay Brave. Team Lola." And he posted his creation on Facebook. Soon, word of the family's story began to spread. "People from work started seeing it, and then we decided to set up a separate Team Lola page because I didn't want people seeing her personal profile page," Mari says. "And it just kind of caught on from there." So much so, in fact, that even celebrities like Sophia Vergara and Eric Winter have posted photos to show their support for Team Lola. "That's been wonderful because it's helped take her mind off of the scary stuff," Mari says.
"He said, 'You know what, this all sounds complicated, and it is, but I've done this a thousand times, and we've seen every curve ball -- we know what we're working with here.' After that, we felt really secure and safe in knowing we were at the right place and in the right hands." - Mari Serrano-Montilla
When the family arrived at Mayo Clinic, they received some more unexpected news. "When we came to Mayo, we just thought she was getting the cone procedure to fix her heart," Mari says. "But after she had her checkup, we found out there was a lot of other stuff going on that we didn't know about." That "other stuff" included an atrial septum defect. "It was all very overwhelming," Mari says. The one bright spot was that the family found all of this out the day before Lola's surgery, which Mari says, "didn't give us too much time to think about it."
She says the family also found comfort in the words of the man they'd traveled all that way to meet: Dr. Dearani. "He said, 'You know what, this all sounds complicated, and it is, but I've done this a thousand times, and we've seen every curve ball -- we know what we're working with here,'" Mari says. "After that, we felt really secure and safe in knowing we were at the right place and in the right hands."
The surgery went as Dr. Dearani described, and just one week after her surgery, Lola was ready to go back home to Puerto Rico, although Mari says she wasn't so sure at the time. "I almost told them, 'I'm not taking her home yet! She's not ready!,'" Mari says. "But she recovered really fast."
Lola and her parents returned home to Puerto Rico, but Mari says they still feel a close connection to Lola's care team at Mayo Clinic. "She had a follow-up appointment just the other day with her cardiologist here in Puerto Rico, and he told me, 'I just got off the phone with Dr. (Patrick) O'Leary and we were talking about how great she's doing," Mari says. "That made me feel so good and made me think, 'Okay, I'm going to stay in contact with these people (at Mayo) for life! They've made us feel such a great sense of security.'"
And that's why Mari says she wants other families who may be dealing with similar circumstances and uncertainties to know that there is hope, and there is help. "I would tell them not to think twice about coming to Mayo Clinic," she says. "Do it sooner rather than later. Lola's quality of life is so much better now."
In addition to the Team Lola Facebook page, the family has also set up a Team Lola website/blog that Lola says she wants to help update and maintain going forward as a way to give hope to others like her. And she made this video about her visit to Mayo Clinic.
"It's important for me to share my story, because I think some kids might be afraid to get surgery," she says. "Also, some parents might be trying to figure out how their kids will be feeling after having a surgery like this. I'm class president now and I feel like a whole new person."
And she says she also wants others to know who's directly responsible for making that happen. "I want everyone to know that my doctors at Mayo were fantastic," Lola says. "And my nurses were there with me 24/7 in case I needed anything."
That includes a time when all she wanted to do was see the sun. "When I was plugged into all the different machines and on oxygen, I hadn't seen the sun in quite a while, and I told them I wanted to see the sun," she says. "So they took me in a wheelchair with all my IVs and everything just to see the sun for a couple of minutes. That was just a very, very good experience."
Sooooo happy for you and your family Lola. I have 2+ tricuspid regurgitation and trace mitral and pulmonic valve regurgitation. I have palpitations and on occasion my heart races. So far my cardiologist doesn't recommend surgery but as a nurse I'm thinking it will get worse over time. And you know what they say, nurses and doctors make the worse patients! Reading your story has helped me to not be afraid if I have to one day have surgery. Oh and by the way, my step granddaughter had surgery when she was one year old to repair an atrial/septal defect. She is now 26 and expecting her first child!