In the first couple of years of her youngest daughter’s life, Tracey Carpenter heard from doctors time and time again that her child was allergic to dairy. Her maternal instincts kept telling her otherwise, though; something just didn’t seem right.
After pushing for further testing, Tracey learned that her child, Avery, had a rare heart condition. She remembers how stunned she and her husband were when they heard the news.
“We were just numb,” Tracey recalls of that day in 2009. “Her heart was the size of an adult man’s, and it was barely twitching. It shocked everyone in the room.”
Avery has a congenital heart defect called anomalous left coronary artery from the pulmonary artery (ALCAPA), which results in a lack of oxygen to the heart. The condition affects one in 300,000 babies, and it has a mortality rate of 90 per cent if not diagnosed within the first year of life. Avery was two-and-a-half.
On the afternoon of her diagnosis, Avery was admitted to the pediatric intensive care unit at BC Children’s Hospital in preparation for surgery the next day. She was in hospital for the following five weeks, and finally left for home with six different heart medications— with a hope that her heart would remodel itself.
As a result of Avery’s late diagnosis her heart muscle contains scar tissue and she suffers from a leaky Mitral Valve, the valve between the left atrium and the left ventricle of the heart. In 2011 Avery had a second open heart surgery to repair that Mitral Valve; it was a harrowing experience for the family, but it was ultimately successful. Avery’s heart function has improved over the years and though it’s not quite typical it is working very well, says Tracey.
Caring for a child with a serious heart condition is a daunting task.
“It was very scary at first; we were in complete crisis mode,” Tracey says. “We had to relearn how to look after her. It was about finding a new normal.”
As the Carpenter family continues to cope and connect with others, Avery is thriving.
In fact, her life is busier than ever, says Tracey.
The third-grader dances five days a week on a competitive dance team, and takes jazz, hip hop, lyrical, modern, acro and musical theatre lessons, and loves swimming, skiing and riding her bike.
We're thrilled Avery has agreed to be our 2016 Jeans Day Champion.
Mark your calendars and #JeanUp for BC Kids on April 28, 2016.