Flo Bear, a 36-year-old, stay-at-home mom from Fort Wayne, Ind., doesn’t have to look further than her 2½-year-old daughter Georgia for a reason to be thankful for good doctors and modern medicine. Although she was born healthy, Georgia was seven weeks early and had to spend the first 30 days of her life in the neonatal intensive care unit gaining weight before she could go home with her mom and dad, Tom.
Flo’s own health issues have given her even more reasons to be grateful for advances in medicine and the people behind them. Born with only one pumping chamber in her heart, Flo got to know her way around the cardiology department at Riley Hospital for Children at Indiana University Health. She had two surgeries before she was 10 years old in preparation for a third surgery that would hopefully prevent eventual heart failure and the need for a transplant.
Although she had to limit her physical activity and she tired easily, Flo says she didn’t feel disabled by her condition.
“My parents were very positive about it,” says Flo. “I didn’t know any different.”
New procedure gives Flo a new life
When she was 10 years old, Flo underwent the third surgery, a Fontan, a pioneering procedure at that time for children with congenital heart conditions. Named for the doctor who developed it, the procedure rerouted blood flow to compensate for the chamber (ventricle) that didn’t fully form before Flo was born. Rerouting the blood flow allowed blood to go to the lungs without needing two pumping chambers, and gave Flo a normal oxygen level. That meant her heart could function with just one pumping chamber rather than a normal heart’s two.
Flo had the procedure done at Mayo Clinic, one of the few facilities at that time performing it. The procedure was a success and eliminated the restrictions Flo had on physical activity.
“I lived a normal life,” says Flo. “I could participate in gym and in sports—I really didn’t have any limitations.”
It wasn’t until she was 27 years old—by that time married to her husband, Tom, and working in advertising sales—that Flo had any heart-related issues. She developed an arrhythmia due to scar tissue that developed after the Fontan and experienced episodes when her heart would race up to 200 beats per minute. Medication controlled the condition and kept the episodes to a minimum.
Flo learned that the arrhythmia was one of the complications doctors were seeing develop among the group of oldest people to have the procedure done. It wasn’t long before Flo learned about another complication from the procedure.
“My body wasn’t retaining protein the way it should and I started retaining water and gained about 20 pounds,” Flo said. “When I started eating a high-protein diet and taking medication, I lost the weight within two weeks.”
Keeping the complications under control didn’t last, however. A few months later, Flo was making regular trips to the emergency department, her heart racing. Doctors used medication and administered electrical shocks, almost monthly for a year, to reset her heart to a normal rhythm. Indiana University Health cardiologist Mithilesh Das, MD, recommended using ablation, a minimally invasive procedure, to remove the scar tissue and correct the arrhythmia.
Timing works in Flo’s favor
Before the procedure, Flo had an echocardiogram, and a CT scan, which provided detailed images of the heart. She was referred to W. Aaron Kay, MD, director of the Adult Congenital Heart Disease Program, who saw that the right chamber of Flo’s heart was massively enlarged, likely the reason why she had so many rhythm problems.
“Dr. Kay explained that the Fontan procedure had been modified since I had it done,” says Flo. “He said I needed a Fontan conversion, which would bring the original procedure ‘up to code,’ so to speak, and address the issues I was having.”
Flo and her husband Tom learned that without the conversion, the arrhythmias would continue and eventually, Flo’s liver and other organs would begin to fail. They were shocked—she’d gone from needing a minimally invasive procedure to needing major heart surgery.
Three days later, they received a call telling them John Brown, MD, a pediatric cardiothoracic surgeon at Riley Hospital for Children at IU Health who was involved in pioneering the Fontan conversion, had reviewed her case and said she was a prime candidate. He wanted to do the operation while she was as healthy as she was. He had an opening in his surgical schedule—just five days later.
Because she was already a member of the Riley Hospital for Children at IU Health family and Dr. Brown was a pediatric surgeon, Flo went “home” for the surgery, which was a success. Flo rates the entire experience “awesome.”
“Dr. Brown was amazing; we are so thankful for him,” says Flo. “My recovery experience was amazing because the nurses were great.”
Flo attributes her smooth recovery—Dr. Brown released her to “normal life” at her six-week check up—to great support from family and friends, and a positive attitude.
“The mind is so powerful,” she says. “I’m a firm believer if you think positively it helps in the healing.”
She’s using that positive attitude and a healthy lifestyle—eating clean, yoga, walking and managing stress—to do her part to take care of her heart and maintain her good health.
“I’m not sure what’s ahead down the road. There’s always a chance I’ll need a heart transplant in 10 years; they don’t know,” says Flo, referring to being a recipient of two pioneering procedures. “Dr. Brown’s involved in research with congenital heart patients. They’re pioneering new things all the time.”
For now she’s happy to be chasing a toddler and having so much going on she doesn’t have time to think about “what ifs.”
“I’m just living a normal life.”