by Katherine Sklar for Gabrielle's Heart Camp
Editor's Note: Danica Aguiar was born with transposition of the great arteries. She had her first open-heart surgery when she was a week old, and she is facing another surgery. At age nine, she celebrated her success by participating in a fashion show as part of the American Heart Association's "Little Hearts. Big Love," fundraiser.
Danica Aguiar is what you may call a typical nine-year-old. Except for her heart condition.
Nancy Aguiar was not aware that her daughter had any heart issues before she was born, but at just three days old, they discovered that she had an enlarged heart and she was rushed to Children's Hospital Boston.
Through extensive testing, it was determined that Danica was born with transposition of the great arteries. The doctors explained to Nancy and her husband, John, that Danica's aorta and pulmonary arteries were attached to the wrong ventricles and that she would need immediate emergency surgery to correct this. The doctors explained that the surgery was complicated further as Danica only had one coronary artery, that she had holes in her heart walls - ASDs and VSDs - and aortic valve regurgitation. "There are no words to describe what went through my head and my own heart when I learned how sick my little girl was. You know these doctors are the experts, but how does a parent say 'okay' to surgery on a newborn. But how can you not do everything to help your baby girl."
Danica had her first open-heart surgery performed when she was just a week old. Fast forward nine years and you now see a strong, happy, and active little girl. Danica is a cheerleader, plays softball and her newest informal "stress test" is playing basketball. "Our pediatric cardiologist with the Pediatric Heart Center, has stressed the importance of encouraging Danica to be a normal kid and not asking her to hold back. This advice has given me the courage to let her discover and test her limits, to not be afraid for her."
Danica will face additional surgeries to correct a faulty valve issue, but thanks to the amazing care she received so early in life, she will face these procedures with confidence and strength.
If you ask Danica about her condition, she will tell you with a smile "my heart is special because other kids don't have heart problems. It doesn't hold me back. I would always rather go outside to play!"
"Danica is a super active little girl - she plays basketball, softball, and is a cheerleader," says Danica's mom. "And while she's already been to camp, what will be so special about this Gabrielle's Heart Camp experience is that she can meet other kids who have the same scars, who have been through the same experience. And she can meet adults who have lived with heart issues and learn that she never needs to hold back - she can do anything."