For some parents, watching your kindergarten student climb on the bus for the first time can be heart-wrenching. For Jamison and Nikki Wills, that moment in August was easy compared to watching their daughter get wheeled into heart surgery when she was just seven-days-old.
Maya Wills was born four weeks early in April 2007. Despite being a little early, she seemed healthy, suffering from only a few ailments common to newborns born prematurely. On the fourth day at the hospital however, a heart murmur persisted and an echocardiogram revealed a coarctation of the aorta. Simply put, her aorta was nearly pinched shut, limiting the blood flow.
"We were in major shock," Nikki recalls. "Things were looking good, and then 45 minutes later we were in an ambulance heading to Riley Children's Hospital."
A pediatric cardiologist at Riley performed another ECG and discovered that Maya's aorta had a bicuspid valve instead of a tricuspid valve. Since Maya's oxygen levels were good, doctors decided to fix the valve later and focus instead on the coarctation of the aorta.
At seven--days-old, Maya had closed heart surgery to correct that problem.
"The surgery went well, but because Maya was only 4.5 pounds, she developed some other complications," Nikki says. "For two weeks in late April and early May, Maya was very sick. It's not until we look at the pictures now that we understand just how bad it was."
Maya finally went home on May 23, about six weeks after her birth.
Since that time, Maya has been growing and doing the things little girls love to do.
"Maya is a vibrant, funny, and bright five-year-old girl," Nikki says. "She loves to be silly, dance, run, and climb."
Maya also had an additional heart surgery. Earlier this summer, she went in for an open-heart procedure.
"When Maya was about one, we learned that she also had a subaortic membrane - a piece of tissue below the aortic valve which forces the blood to regurgitate and puts pressure on the valve," Nikki says.
The pressure across the aortic valve from the membrane slowly increased each year, rising from 10 to 42 this past January.
On June 19, Maya underwent successful open-heart surgery to remove the membrane and place a patch on her aorta for reinforcement.
As part of the surgery, the family also got some good news.
"We learned that her aortic valve was actually tricuspid, however it had been disguised by the membrane," Nikki says.
Maya is back to her normal activities and enjoying her first days kindergarten – and riding the bus. But her family knows that more heart surgeries may be ahead.
"There is a 20 percent chance the membrane will grow back, so we remain hopeful there won't be any surgeries - at least for a while," Nikki says.
Throughout their experience, the Wills' have come to support the American Heart Association and its work funding research for congenital heart defects.
"We're so thankful for all of the research that has been done by the American Heart Association in the past," Nikki says. "The battles that Maya has faced may not have been won had she been born a few years earlier. We're counting on additional research to see her through the future and to benefit other kids who face similar conditions."
Maya and her family will be participating in the American Heart Association's Indianapolis Heart Walk on Sept. 15. For information on how to join them, visit www.indyheartwalk.org.
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