Dancing Through Life with HLHS: Taylor’s story

Whether it’s hiking up a mountain or dancing with her competition dance team, 16-year-old Taylor leads the way. Although Taylor has a heart condition, “the rest of us sometimes have trouble keeping up with her!” said Taylor’s mom, Brandie.

When Brandie was pregnant with Taylor, she went to her routine ultrasound at 22 weeks and found out she was having a girl. With two energetic little boys at home, that was happy news. But Brandie’s joy was quickly overshadowed by concern as the ultrasound also revealed a problem with Taylor’s heart. “At that time, I had no idea what hypoplastic left heart syndrome (HLHS) was. Back then, it was a huge unknown – after age 10, they didn’t know what would happen,” Brandie shared.

Brandie met with heart specialists at Children’s Mercy and together, they made a plan for Taylor’s care. Just minutes after Taylor was born at another hospital, our transport team rushed her to the Children’s Mercy NICU for specialized care. Brandie left as soon as her doctors would let her to be with Taylor. “I remember going to the hospital and seeing a little purple foot sticking out,” Brandie recalled. “Seeing her like that – when I already had two young kids at home – it was a lot.”

During that overwhelming time, what Brandie remembers most is the staff at Children’s Mercy. Some of those team members are still caring for Taylor and many other Children’s Mercy Kansas City Ward Family Heart Center patients. “They just made everything better. I still remember their faces and names. They inspired me so much that when Taylor went to kindergarten, I became a nurse.” Taylor’s older brothers were also a huge help as she was growing up, acting as fierce protectors for their little sister.

Now, as a high school sophomore, Taylor is charting her own course forward as an athlete with HLHS. She studies ballet, tap, jazz, hip hop and contemporary dance and competes with a local dance team. “Sometimes at dance, I get a little more tired than everyone else, but it’s not that big of an issue,” Taylor shared. She is thinking about teaching dance to younger kids in the future and encourages all kids to follow their dreams. “Do what you love, and don’t be too hesitant to try something because you have a heart condition. The more you grow, the more you’ll get used to that environment.”

Brandie supports her daughter’s goals wholeheartedly. “Let your child lead the way,” she said. In their family, “I’m her guide on the side – Taylor leads the way.”