Sofia Montoya: Research Goes Red™
An ultrasound before she was born revealed Sofia Montoya had significant health challenges ahead – that includes her heart being on the wrong side of her body. After undergoing multiple surgeries, including stomach surgery when she was a day old, open heart surgery at 5 months and a pacemaker at age 7, Montoya’s heart story inspires courage in others facing health challenges.
Before I was even born, doctors knew something wasn’t quite right based on my blurry sonogram pictures. With limited technology in 1999, there was no telling exactly what it was.
It turns out that I have a heart condition called Holt-Oram syndrome. I was born with only four fingers on my right hand, my heart had a hole in it and was on the right side of my body, and my intestines were twisted. All of those issues led to multiple surgeries starting when I was just two days old. I also have scars from being tube-fed until I was four years old. Built-up scar tissue from my first open heart surgery slowed down my heart beat and, as a result, I needed a pacemaker at age seven. I got a battery replacement at age 14 and will need another one in about 5 years – a procedure that isn’t without its risks. Needless to say, I sometimes feel I know a little more about medical technology than the average 20-year-old!
As limited as it may have seemed at the time, the research and medical technology available in 1999 gave me a fighting chance that babies born just a few years before didn’t have. I live with technology inside me every day, as I’ll have a pacemaker for the rest of my life. While research advances that extend the battery life of the device will mean fewer procedures for me, I’ll still need to “recharge.” And while there is still so much to learn about congenital heart defects, the advances even in my lifetime are lightyears from the generation or two before me— many of whom wouldn’t have been expected to live to adulthood, much less live a full and healthy life as I do.
(Sofia with her father, David Montoya )
As I started to get involved with the American Heart Association’s Go Red for Women® movement, I was shocked to learn how common heart disease is in women and that it’s our leading cause of death. I was also disappointed to find out women are grossly underrepresented in research and that clinical trials have not always taken into account the differences in how heart disease affects men and women.
Of course, medical advances don’t happen without people willing to take part in the extensive research needed to make these breakthrough discoveries. That’s why I am so excited the American Heart Association and Verily are joining forces on a new initiative, Research Goes Red™ that will help connect more women to research opportunities, such as participating in surveys and focus groups, contributing data for clinical research projects, and testing new tools, technologies and treatments in the years to come. I will be joining a Facebook Live event on Thursday, February 28 to talk more about the importance of women in research and this initiative! I hope you can tune in.
We have to make a commitment to take care of ourselves, and our health, because life is precious and shouldn’t be taken for granted. Now we have an opportunity to make a difference for generations to come as well!