PORTLAND, Maine — Valentine's Day is a day that honors hearts of all shapes and sizes, but it also marks the end of Congenital Heart Defect Awareness Week.
Nearly 2 million American adults live with a heart defect, according to the Adult Congenital Heart Association. For many, including Mindy Beyer, they are lives that weren't promised when they were born.
"I was born with what they call L-transposition and dextrocardia, so my ventricles are reversed. The one that should pump to my lungs pumps to my whole body, and my heart is on the wrong side," Mindy Beyer explained.
"My parents were told when I was born that if I made it to the age of 3 and lived through my surgery that they'd be lucky," Beyer said. "I am now 43, and I have dedicated my life to helping others with heart conditions like myself."
As co-chair of the Patient and Family Advisory Board for ACHA, Mindy works to spread awareness of heart defects and inspire more support.
"I think that's something that all adults with congenital heart disease need to know is that treatment is a lifelong thing. Our hearts aren't fixed as children. They used to say you had 'corrective surgery.' But the reality is that now that we are living longer and longer, those corrective surgeries aren't lasting to the extent that they had at first thought they would," Beyer said.
That lifelong treatment isn't always easy to find, though, despite specialists working hard to support those patients.
"There's only a little over 400 physicians that are specialized in adult congenital heart disease, that subspecialty. And there are 2 million-plus patients, so do the math on that," Beyer said. "We need to get more providers into the field, and we need more accredited centers in the United States."
According to ACHA, one in 100 babies are born in the U.S. with a heart defect. Many don't get more than a few years. Others, like Mindy, take each day as a reminder to keep fighting.
"I will always have to see a specialized cardiologist, and there really isn't a lot of data on what my future holds. But I'm here a lot longer than I ever expected to be, and so I just take each day and leave it because that's what you've got to do." Beyer said. Her big message on Valentine's Day is to those adults who stopped treatment as children.
If anyone remembers seeing a cardiologist as a kid or having one of those corrective surgeries, the fight is not over. According to Beyer, many of those adults are outliving their treatment. If anyone thinks they fall into this category, Beyer encouraged them to ask their doctor about seeing a specialist for a check-up.