By Deborah Allard
Herald News Staff Reporter
Michaela Gagne Hetzler with her husband, Joshua, and their children, Lorelei, 13, Evan, 12, Andreas, 4, and Guenyth, 2, during a trip to Disney World. Submitted photo.
Having a serious heart condition changed the course of Michaela Gagne Hetzler's life, but new research proved recently that her disorder was more benign than threatening.
Hetzler was diagnosed when she was 17 with Long QT Syndrome, a heart arrhythmia that is activated by physical activity and can cause fainting and even sudden death.
She recently learned that her particular mutation of Long QT did not have any deadly symptoms. Some patients with different mutations of the disorder are not quite so lucky.
"This is why it's so important to fund research," Hetzler said.
When Hetzler, a school adjustment counselor at Diman Regional Vocational Technical High School, and an American Heart Association spokeswoman, first learned she had Long QT in 2000, there wasn't as much known about the genetic disorder.
Doctors knew that some families had more deaths due to the disease, and others had none, but they didn't yet understand why.
Hetzler said learning she had this type of disease was difficult, especially for someone so young and athletic.
Doctors implanted a defibrillator in the high school senior's chest to monitor her heart constantly, and to send a shock if she developed a deadly irregular beat.
The diagnosis ended her dreams of playing college soccer. Instead, she studied art therapy, mental health counseling and psychology, earning both a bachelor's and a master's degree.
Hetzler's competitive nature needed to be quenched, so she traded in her sneakers for a tiara, becoming Miss Fall River in 2004 and Miss Massachusetts in 2006.
Hetzler, now 34, went on to speak internationally as an American Heart Association spokeswoman, a position she still holds, and one that may have helped her as well as others.
"I've done a lot of work with parents who've lost their kids from (Long QT syndrome)," Hetzler said.
Maybe it was divine intervention that nudged her toward a different journey. Maybe it was just chance, or science.
Whatever it was, Hetzler said she has "no regrets" and can look forward to a long and healthy life for herself and her children.
Hetzler on Feb. 3 had surgery to remove her defibrillator, which she called her "guardian angel" all these years.
Coincidentally, her surgery was on the American Heart Association's National Go Red for Women Day, to spread awareness about women and heart disease.
When she learned she no longer had to worry about her condition, it was a shock.
"I looked at my doctor and said, 'I cried when you told me I had this condition, and I'm crying now that I don't have this condition.'"
Hetzler said deciding to remove the defibrillator, which became a part of her anatomy and life, was a very difficult decision.
"I'm still getting used to it," Hetzler said. "I have a very different scar now."
This time around, health insurance covered her plastic surgery for the scarring. It didn't when she had her defibrillator placed, and then replaced years later.
Another change is that she should now qualify for life insurance, which wasn't available to her with her condition, but grows increasingly important as a wife and mother of two biological children, ages 4 and 2, and two step-children, ages 13 and 12.
Hetzler said when she first learned she wasn't sick, she felt like a "fraud" for speaking about heart disease for so many years, but has thought better of it since then.
Besides helping the many families with Long QT, she spread awareness for years that heart disease kills women, and also raised funds to bring automatic defibrillators into all Fall River schools. Recently, a school defibrillator bill passed that requires all schools in the commonwealth to have automatic defibrillators.
"It really changed my life," Hetzler said.
Email Deborah Allard at firstname.lastname@example.org