Born with heart on wrong side of her body, Colorado college student overcame health struggles, makes living healthy a priority.
An ultrasound before she was born revealed Sofia Montoya had significant health challenges ahead, including her heart being on the wrong side of her body. After multiple surgeries — from open-heart surgery at 5 months to a pacemaker at age 7 — Montoya wants to inspire courage in others facing health challenges.
Problems revealed by an ultrasound were so severe, doctors warned Sofia Montoya’s parents that their infant daughter might require a heart-lung machine to survive at birth.
Montoya was born February 15, 1999, and was able to breathe on her own, but would require several surgeries and several months in neonatal intensive care to be strong enough to leave the hospital.
Montoya, who is from Englewood, Colorado, was diagnosed with Holt-Oram syndrome, a genetic disorder that affects the heart and the limbs. She was left with only four fingers on her right hand.
Montoya’s heart was on the wrong side of her body and it had a large hole that needed to be closed. The hole and the fact that only one of her lungs developed fully meant she also needed extra oxygen. More urgently, Montoya’s stomach and intestines required surgery to reconnect them when she was a day old.
At 3 months old, she developed an infection after aspirating into her lungs, sending her into an incubator for a month to recover. Afterward, she required a feeding tube until age 4.
Montoya underwent surgery to repair the hole in her heart at 5 months and was finally able to go home at 6 months.
By age 7, scar tissue from her earlier surgery caused Montoya’s heartbeat to slow, requiring a pacemaker, as well as surgery at 14 to replace its battery.
Despite her health issues, Montoya says she strives to keep herself healthy and maintain a “normal” life. As a youth, she played soccer — using a heart guard following her pacemaker surgery — and participated in the marching band as a percussionist.
“I’ve always lived with shortness of breath, but it’s something I could manage,” she said.
Now 19 and a student at the University of Colorado at Boulder, Montoya says she has a typical college life — one she hopes can inspire others facing health challenges. She bikes to campus from her apartment and walks to classes. She sees a cardiologist each year and will undergo surgery to replace the battery on her pacemaker in a few years but doesn’t require any medication.
“No matter what life throws at you, never give up,” she said. “Find a way to adapt and keep going.”
Montoya is one of the more than 1 in 3 women living with cardiovascular disease. Among women age 20 and older, about one-third of Hispanics have cardiovascular disease.
The American Heart Association’s Go Red for Women movement has been at the forefront of raising funds to support breakthroughs in science and technology that save lives.
Montoya recently participated in a STEM Goes Red event dedicated to empowering young women to explore science, technology, engineering and math outside the classroom while also learning how to take charge of their health and wellbeing through Go Red for Women. She hopes her story will highlight the importance of funding research.
“Last year, I got to speak to a group of high school girls at Metropolitan State University in Denver,” she said. “It was such an amazing opportunity to be able to speak to how much technology plays a role in medical advancements. When I first got my pacemaker, the battery lifetime was seven years. When I got a new one, it was 13 years. That advancement has played a huge role in how I live my life. It's so important that STEM is added to the mix of everyday school life because it can really change lives.”
She particularly enjoys sharing her story with kids doing school-based fundraisers for heart health, something she participated in as a child yet hadn’t realized supported research that benefited her until adulthood.
“I had so many kids tell me about their relatives who had heart surgery, so it was great to see how they connected how the money they raised were helping people,” she said.
Montoya stays educated about what’s next for her heart as she shifts into adulthood. She also makes sure to get enough rest, keeps a healthy diet and avoids soda and other sugary foods.
Every year, 40,000 people in the United States die from heart problems because of consuming too many sugary drinks and having one more sugary drink each day can increase women’s risk of heart disease by 17 percent.
“Making sure I’m eating well and exercising is proving to myself that I can take care of whatever heart I was given regardless of the circumstances,” she said. “All that happened has made me realize that I am here because I fought for it and so I need to protect myself at any cost.”