Help for young women with cardiac issues

New young moms may worry whether their baby is eating enough, growing at the right rate or if they'll ever get a good night's sleep.

But moms with serious cardiac problems have a different set of problems: If I pick up my baby, will the strain put too much stress on my heart? What if I faint while I'm alone with my child? How can I breastfeed, or get down on the floor to play with my baby?

Although relatively rare, many young women across Canada are living with congenital heart defects, cardiac issues that develop during or following pregnancy and other problems. The challenges of heart conditions are difficult enough for older men and women, who represent the bulk of cardiac patients, to manage. But for women in their 20s, 30s and 40s, who are launching their careers and families, the obstacles can be overwhelming.

Toronto's Women's College Hospital, which was also first in Canada to launch a women-specific cardiac rehab program in 1996, has recently created a support program designed specifically to help women in this younger demographic. The program, believed to be the first of its kind, allows women to talk about their experiences and receive advice and support from others in similar situations.

"They're wanting to provide a safe and secure loving home situation for their baby with their partner and yet they're also faced with a significant cardiac illness," said Paula Harvey, director of the Women's Cardiovascular Health Initiative at Women's College.

Common concerns range from fear of being alone with their children in case something happens to their heart to the fear they will die and be unable to watch their children grow up.

"You can imagine how devastating this is for a woman who's just been through a pregnancy," Harvey said. "Imagine what that is like for someone with a new baby that you're trying to look after and breastfeed … It's really opened all of our eyes, I think, to what these women are coping with."

Jennifer Neubauer is one such case . She was a young woman living in New York when she noticed troubling symptoms. Every year, she came down with pneumonia and also began suffering fainting spells. When she went to her doctor, he told her she was having panic attacks. She wasn't convinced. The doctor ordered a stress test, assuring Neubauer it would come back clean.

It didn't.

Neubauer, now 40 and living in Toronto, found out she had a potentially life-threatening congenital heart condition.

It took years of tests, visits to various doctors and even some inaccurate diagnoses while living in the U.S. before she learned she had partial anomalous pulmonary venous return, a rare condition that occurs when the pulmonary veins return blood to the right atrium instead of the left atrium of the heart, which causes oxygen-rich blood to return to the lungs instead of being pumped to the rest of the body.

It puts a lot of pressure on the heart and can cause serious complications, including pulmonary hypertension or stroke. She underwent surgery to repair the defect, but the doctors told her the damage was too deep in the heart; if they did the repair, she would likely need a pacemaker for the rest of her life. So they didn't complete it.

After Neubauer became pregnant in 2010, another heart scan revealed a small hole in her heart. The doctors told her the hole was in a tricky spot, and that her pregnancy, which caused her heart to enlarge, is likely what enabled them to finally see it.

Earlier this year, she underwent surgery to successfully correct that problem. She describes the entire ordeal as terrifying. "There were times where I definitely felt I wasn't going to come through it," she said.

When she started the recovery process, the hospital encouraged her to enter a rehabilitation program. But as a young woman with an infant at home, Neubauer didn't see herself as the typical heart patient. When she learned about the Women's College Hospital program, she took a flyer.

"It definitely made me feel not so alone in it," she said.

A nurse practitioner trained in cardiac rehabilitation acts as a facilitator, and there are caregivers available if women bring their children. Neubauer and five other women meet monthly to talk about the issues they are facing, the adjustments they have to make in their lives as a result of their heart conditions, as well as other psychological side effects such as depression. The women also engage in other forms of rehab, such as supervised exercise and heart clinic classes, and have access to kinesiologists, dietitians and other experts.

There are no definitive statistics detailing how many young women are affected by congenital heart defects, pregnancy-related cardiac problems and other heart-related issues.

The health risks for women with heart issues can be worrisome, as pregnancy puts tremendous physiological stress on the body. Some research also suggests problems like coronary artery disease among young women are on the rise because of unhealthy lifestyles and the growing trend toward delaying having children.

Many cardiac experts also predict more young women will experience heart problems in the future as rates of obesity and diabetes continue to rise. A 2007 study published in the Journal of the American College of Cardiology found that more women under age 45 were dying from heart disease caused by clogged arteries.

Although it would seem like the toughest road is behind her, Neubauer said life after heart surgery comes with its own set of worries and concerns, such as learning to trust her heart will continue beating.

"My heart worked this way, even if it was a funky way, it worked this way for 40 years, and now I've changed everything about it," she said, describing how she has felt since the surgery.