Cathy Vollmer sits in the front row at the 2003 USA National Swimming Championships in Indianapolis. She's nervous, as any mom with a daughter competing would be. But Cathy's top worry isn't whether her 15-year-old, Dana, will swim a good time or finish first.
She's worried Dana's heart will stop beating.
At Cathy's feet rests a red container the size of a lunch box. Inside is a defibrillator, a device that can jump-start a failed heart. Cathy sits pensively, ready to leap over the railing separating her from the pool area, and ready to use that defibrillator on Dana's heart if she needs to. At 15, Dana was diagnosed with long QT syndrome, a cardiac electrical disorder.
"All I was doing was praying the whole time in my head, begging God to please not let anything happen to her … watching every stroke, any sign of trouble or flailing, or anything," Cathy remembers of Dana's first meet after the diagnosis, even though she says she tries to forget.
Fast forward nine years. Dana Vollmer, now 24, is competing in her second Olympics — cleared of the heart condition that might have ended the dream if not for her strength, determination, and unsinkable support system.
Dizziness, Diagnoses And Decisions
At 15, Dana was an up-and-coming swimmer in Granbury, Texas. Three years earlier, she was the youngest competitor in the 2000 U.S. Olympic swimming trials. When the dizzy spells started, the strong and healthy teen thought dehydration or low blood sugar — not a heart problem.
"Swimming at an elite level, you'd think she'd have the healthiest heart in the world," Cathy says. "We really didn't expect anything to come of it."
As a precaution, Cathy and her husband took Dana to a cardiologist at Cook Children's Hospital in Dallas. They learned an extra electrical pathway in Dana's heart had been causing its irregular rhythm. During the ablation to correct her abnormal heartbeat, Dana's doctor found something more worrisome: Long QT syndrome, a cardiac electrical disorder that can trigger potentially fatal arrhythmia. Many people don't even know they have long QT syndrome until they go into cardiac arrest.
Suddenly the Vollmers had a tough decision to make.
"You're not allowed to do athletics," Dana says of the diagnosis she received. "Any adrenaline could put it [the heart] into a fatal rhythm … a nightmare, a friend scaring me. It was mind-boggling to think about my life without any of those things."
Dana also couldn't picture her life without swimming, despite her parents' efforts. "We tried to emphasize how many talents she had," Cathy says, "but it's hard when all your identity and praise and everything you've ever been are tied up in something."
The Vollmers decided not to let doctors implant a defibrillator to control Dana's heart rate. They also decided she should keep swimming. Dana's doctor agreed to sign off as long as she had an external defibrillator on site at every practice and every meet.
"If the doctor had refused to let her take this chance, as parents we would have had to say no and ask for the internal defibrillator," says Cathy. Prepared to bring Dana back for an internal defibrillator if she ever experienced a cardiac event, they agreed to try — and just "watch her like a hawk."
Out Of Sight, Out Of Mind
Dana couldn't even look at the red container.
"That defibrillator represented that I wasn't invincible. I could die, my heart could just stop. I refused to touch it. I didn't think if I carried that thing around I could mentally push myself to continue to train, to go to the Olympics," she says. "My mom really became my rock at that point."
It was Cathy who carted the defibrillator to every practice and meet so Dana could focus on swimming.
"My family really allowed me to block it off and continue to train without thinking about it every day," Dana says, noting the emotional toll it took on them. "My parents wanted to make sure I was okay, and I was refusing to talk about it. I was scared in my own way, and convinced myself that not talking meant I didn't have it."
Dana kept swimming and training, all the while pushing any trace of fear as far away as possible.
"There were definitely times it was scary, as much as I tried to block it out. If I got lightheaded, I would associate it with long QT," she says. Part of Olympic training involves underwater work, and for Dana, having to hold her breath to the point of feeling lightheaded was one of the hardest things to do.
"Slowly but surely I never fainted and never had symptoms. It just got further and further from my mind."
Even as the symptoms drifted further from her mind, the defibrillator (and Cathy) stayed close by. At the 2004 Olympics in Athens, where Dana won a gold medal and broke a world record in the 800m freestyle relay, her mom had the defibrillator in the stands.
It went unused.
Dana is an example of an athlete who took the risk to keep swimming and has thrived. But strict guidelines for athletes with long QT syndrome may be keeping others from doing the same, according to cardiologists at Mayo Clinic's LQTS Clinic. They recently examined their own experience with such patients in a first-of-its-kind study.
"About eight years ago, after I started to see some of these lives ruined by the recommendation to discontinue sports, we decided to challenge the status quo," Michael Ackerman, MD, PhD, who presented the study at a pre-Olympics medical conference in Glasgow, Scotland, told Mayo Clinic News Network. "We adopted a philosophy that empowered patients and their families with the right to make an informed and difficult decision about continuing in competitive sports, a known LQTS-established risk-taking behavior."
For the study, Mayo Clinic's LQTS Clinic looked at the records of 353 LQTS patients evaluated at Mayo Clinic between July 2000 and November 2010, and then narrowed the pool to 157 patients who were athletes — ones who participated in competitive organized sports. Of those athletes, 27 chose to discontinue sports. Among the remaining 130 patients who continued to play, only one experienced a LQTS-triggered event during a sport.
Dana wasn't involved in the Mayo study, but her experience supports its findings and the forward-thinking philosophy of getting athletes and their families more involved in the decision.
'Enjoying The Sport Again'
A series of tests following Dana's freshman year of college — when she transferred from the University of Florida to University of California, Berkeley — detected no signs of long QT syndrome. Doctors don't know exactly why, but she may have outgrown it. The years that followed included a back injury, then a diet overhaul when she realized she has food allergies to eggs and gluten. Today she feels stronger than ever.
"This is my first time going into the games with a clean bill of health," she says of the 2012 Olympics, where she'll be swimming the 100 butterfly, the 4x200 freestyle relay, and the 4x100 medley relay. "At the world champs last year I was still getting stronger and learning how to eat right. This past year it's been great to know what I need. I'm leaner and stronger, and I don't have to be as cautious because of an injury. It's amazing ... to be healthy and really enjoying the sport again."
Cathy loves watching the Olympics. She loves seeing every athlete compete because she knows firsthand the level of hard work and sacrifice that goes into making it. "People watch the Olympians and think they're so lucky, they were born swimming that fast," she says. "Not one of those kids got there like that."
When she's cheering on Dana from the stands at the London Olympics, Cathy won't have the defibrillator at her feet. "I still don't even have it back from [the coaches at] Berkeley," she says happily. They can keep it.