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Victoria Rodriguez was 6 years old when she found out she had been born with heart disease. 

It’s not that her parents were trying to keep anything from her. Other than a heart murmur that had never caused her problems, they didn’t know she had heart issues either.

Her struggles to breathe and her sleep apnea had been attributed to asthma, so she used a nebulizer and was warned against participating in outdoor sports. At age 5, Rodriguez fell in love with figure skating. The following year, the heart murmur that had never been a problem alerted her pediatrician to what turned out to be more serious.

Rodriguez had surgery a week later to close a hole in the upper chamber of her heart. 

“I remember meeting my surgeon for the first time,” said Rodriguez, now a volunteer for the ·¬ÇÑÊÓƵ.  “I threw my Barbie doll on her desk, said her heart was going out and demanded that she save Barbie’s life, right then and there.”

The surgeon was “super calm,” Rodriguez said. “She said, ‘I’ve got this. You’re going to be fine.’ She repaired my heart 100%. I couldn’t have asked for a better surgeon.”

Recovery was tough, but worth every minute of discomfort and fear when Rodriguez went onto the ice for the first time, realizing with excitement that breathing was no longer a struggle. She began skating six days a week for as many hours as she could cram into her school schedule, going on to become a nationally and internationally ranked skater before leaving the sport at age 18. 

By then, she’d been giving talks about congenital heart disease (CHD) for years. She started as a junior ambassador for the ·¬ÇÑÊÓƵ when she was 8, speaking at Kids Heart Challenge events. That led to telling her story at city council meetings, high school football games and Go Red for Women luncheons and fashion shows.

“You’ll hear stories of kids passing out during PE class and never waking up,” she said. “That’s part of why I’m so passionate about spreading the word about CHD. It’s amazing how many people have gone through this or know someone who has suffered from heart disease. every year with CHD.”

When Rodriguez was 26, her OBGYN told her that because of her heart history, she should have children as soon as possible to make sure her heart was as healthy as possible. Not long after she and her husband Cris married, she got pregnant with their first daughter. A fetal echocardiogram showed their daughter Isabella’s heart was normal, and the couple breathed a collective sigh of relief.

But 20 weeks into her current pregnancy, a routine anatomy scan showed their second daughter has a hole in her heart called a ventricular septal defect.

“I was a little bit devastated,” said Rodriguez, whose baby was born this past November. “I just cried and cried.”

Fetal echocardiograms eased her fear somewhat. Doctors determined that the muscle around the hole will probably grow until it closes around the hole, and they’re optimistic that baby Rylee will have no symptoms and won’t require surgery.

“Right now, the news is good,” Rodriguez said. “Basically, the doctor told us that if you’re going to have heart disease, this is the best kind. After hearing that, I had the best night of sleep I’d had in a while.”

Thinking of her baby with CHD, she’s had cause to reflect on how her own parents felt when receiving the news of her heart issues.

“You don’t want to scare your child, so I imagine they shielded me from a lot of concerns,” she said. “Now that I’m a parent, I can’t even imagine what my mom had to go through. Just thinking of it makes me really emotional.”

Rodriguez keeps sharing her story – telling parents they are not alone, and that there is hope. But talking about heart issues can be isolating, because it’s not a topic that tends to come up in play groups.

When they received Rylee’s diagnosis, Rodriguez reached out to her mom friends and learned about a child Isabelle’s age with heart disease. Watching her play, hearing her speak, you’d have no idea she has heart disease, she said. 

“That gives me a lot of hope, too.”

Hope she’s determined to share any chance she gets.