Indiana heart disease survivors work to spread awareness

MUNSTER, Ind. (AP) - Olivia Stonehill and Mary Rowan are alive today because of recent advancements in heart-care technology. And they're sharing their stories in the hopes of spreading awareness and inspiring future improvements.

Let's start with Olivia.

The Valparaiso preschooler came into the world in May 2009, seemingly the picture of perfect health. As she was about to be discharged from the hospital, though, her heart failed. She was rushed to University of Chicago Medicine Comer Children's Hospital, where doctors diagnosed her with a congenital heart defect, the leading cause of infant death in the U.S.

She underwent open-heart surgery and spent 36 days in pediatric intensive care. She was in and out of the hospital about a dozen times in her first year, including for her second open-heart procedure at 6 months of age.

Olivia almost didn't survive her third surgery, at 2 years old, when several of her organs failed. "We thought we were going to lose her a few times, but she pulled through," her mother, Courtney Wallace, told The Times (http://bit.ly/1ADnop4 ). "Her recovery was a daunting process."

Olivia's heart defect was likely caused by a chromosomal abnormality called 22q deletion, or DiGeorge syndrome, which also causes her to have a weakened immune system and developmental delays.

Dr. Peter Varga, a pediatric cardiologist at Comer Children's Hospital, said hospitals now commonly screen newborns with a pulse oximeter to gauge their blood-oxygen levels, though that may not even have picked up Olivia's cardiac defect in advance. He noted that while she will always have DiGeorge syndrome, her heart is in good shape. "From a strictly cardiovascular point of view, I expect her to have a near-normal life," he said.

Through advances in surgical technology and detection, the majority of children with congenital heart defects now make it to adulthood.

"It's very likely that 20 years ago, Olivia would not have survived, if she was even lucky enough to have been diagnosed in a timely manner," he said. "Surgery and post-operation management were nowhere near as advanced. Her quality and quantity of life would have been substantially altered and shortened compared to her outlook now, even 10 or 15 years ago."

In addition, new technology will allow doctors to replace Olivia's artificial heart valve without surgery. And a procedure to fix heart defects while children are still in utero is under development.

Wallace, a social worker who now stays home full time to care for Olivia, has become a spokeswoman for the American Heart Association and started a heart walk team in Porter County that raises about $5,000 for the organization annually.

"Typically, one in 100 babies have heart defects of some sort - it's very common," she said. "Hopefully, by telling Olivia's story, families who are just starting out can see what she's going through and have some hope, because I know we didn't have that in the beginning."

Mary Rowan, a registered nurse, was working at an Illinois hospital in 2007 when she started feeling ill. By the time a co-worker helped her to the emergency room, she had no detectable pulse.

Rowan had suffered a massive heart attack. Doctors had to open up two of her arteries and implant stents.

"I'm pretty lucky, pretty blessed, to say the least. If I had not been at the hospital, there's little chance I would have survived any of that," said Rowan, 59, of Crown Point. "If I was in a car, I could have hurt someone else or myself. I was in the right place at the right time."

She's also lucky she had the presence of mind to seek care since, like most women who suffer heart attacks, she had no chest pain beforehand. "I was weak and felt tired - nothing that made me say, 'You're having a heart attack,'" she recalled.

Like Wallace, Rowan decided to give back by becoming a spokeswoman for the national cardiac group. "Because of all the research the American Heart Association does, it may have been different for me," she said. "The research and development of stents saved me from having open heart surgery or literally dying."

Rowan quit smoking the day of her heart attack, has all but given up red meat and now exercises every day. She just wishes she would have taken her family history of heart disease more seriously earlier in life. "If you have a family history, even in your 20s you can start to make changes and to slow the growth of heart disease," she said.

Dr. Jay Shah, a cardiologist for Porter Health Care System, said it's critical for people to realize that heart disease affects men and women differently. Diabetes, hypertension, smoking and obesity are all greater risk factors in women than men. Women are more likely than men to die from a heart attack, develop debilitating cardiac failure after an attack, and have poor outcomes from bypass surgery. At the same time, they're less likely to receive cardiac testing, procedures and evidence-based therapies.

"Historically, heart disease has been thought to be a quote-unquote 'man's disease,'" Shah said. "The most important thing for women to understand is they have the same or greater risk than their male counterparts for developing cardiovascular disease."

While 1 in 3 women die from heart disease, about 80 percent of heart-disease and stroke events can be avoided. The ways to prevent them are the same no matter your sex.

"The main thing you can do is moderate-intensity exercise most days of the week, maintaining a healthy weight and healthy diet, and avoiding tobacco use," said Shah.

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Information from: The Times, http://www.thetimesonline.com