Cyan Scarpati is this year's pediatric Red Cap walker for the American Heart Walk. The walk is Oct. 28 at Vanderbilt. (photo by Dana Johnson)
Sailing through life — Red Cap Walker represents Vanderbilt at Heart Walk
When Cyan Scarpati was born, doctors expected her to live 24 hours. Living was all a matter of beating the clock. And as time passed, the prognosis was extended —first to 48 hours, then to two weeks and then to one month.
This pattern of prolonged hope continued for months. It is how Rebecca and John Scarpati recall the first year of their youngest child’s life.
Cyan was born with complex congenital heart disease including pulmonary atresia, an obstruction between the pulmonary artery and the right ventricle of the heart. She had her first surgery at 24 hours old.
The defect causes what is referred to as “blue baby syndrome” because the vessels to the lung are blocked, which causes a decrease in the oxygen content of the blood.
“When she was born, we had no immediate knowledge of any of this,” said Rebecca Scarpati. “We had already chosen her name Cyan — it is blue on the color wheel. It’s a beautiful name.”
A few hours after holding and naming their daughter, the pair was informed by doctors about the arising complications with the baby’s heart. The couple considered changing their daughter’s name.
“But Cyan felt right,” Scarpati said. “In those first few hours she was Cyan. It was ironic, but that is ultimately who she is.”
At six months, Cyan had her second surgery in an effort to bring more blood to her lungs to improve the oxygen flow. By the time she had her third surgery, her family had moved to Nashville. Her physician was Dr. Thomas P. Graham Jr., professor of Pediatrics and the Anne and Monroe Carell Jr. Family Professor of Pediatric Cardiology.
“Basically by the third surgery, they had re-plumbed her heart,” said Scarpati. “That was when she was 22 months old. After that, we went five years with no real complications.”
Graham said about eight out of 1,000 children are born with congenital heart defects. Of that number, between 1 percent and 2 percent have pulmonary atresia.
“It is a very rare condition,” said Graham. “But because we are a referral center, we probably see 10 to 12 patients a year with such a condition. The series of operations Cyan underwent have been modified and now total three in number. This condition has greatly benefited from research efforts.”
The most recent procedures were aimed at closing a hole in Cyan’s heart. In the past this has been repaired through surgery. In April, a newer, less-invasive procedure using a catheter was effective, after an initial failure with this approach. The catheter closure method had been under study for more than five years.
“This was a fairly new procedure,” Scarpati said. “From what I gather, she and a number of other kids are on the cutting edge of medicine. I know that had she been born not too many years before, she may not have survived.”
The Scarpatis are aware of how research has played a role in their daughter’s survival.
This year, 8-year-old Cyan will represent the American Heart Association as a pediatric Red Cap walker during the annual Heart Walk, set for Sunday, Oct. 28 at Vanderbilt. The event raises money for public and professional educational and community service programs. It is the organization’s largest fund-raiser.
At 11 a.m., a Vanderbilt team rally/lunch and registration kick off the day. Heart Walk festivities begin at noon with screenings and the opening of the children’s area. The walk starts at 2 p.m. Walkers will be entertained by three bands along the route, which will take participants along West End Avenue.
This will be the first time the Scarpati family has participated in the walk. Not only is Cyan an honorary patient, her mom is a team leader—a person rallying walkers and potential donors both locally and nationally. The Scarpatis hope to lead a team consisting mostly of children —a message that heart disease strikes all ages and education starts at a young age.
Scarpati said that Cyan, a third-grader at Eakin Elementary, has become “quite an authority” on the topic, but still cringes at some of the discussions related to her operations.
“She is a remarkable kid,” said Scarpati. “Her strength and courage; her joy and bounce; these are words I use to describe her. But courage describes her the most. She is a real trooper.”
Hearing that description, Cyan asked her mother to define trooper.
“Oh, that’s a person who stays with it and holds on until it’s done,” she said as her daughter smiled.
“It’s amazing when you look back,” Scarpati said. “We’ve had to talk about mortality and the fact that every day is a gift. We don’t live in fear. We know there are no long-term statistics. The procedures seem to be at pace with Cyan’s needs.
“It’s the work done by the AHA that brings all this to the table. It may not have been responsible for any device or procedure they used for Cyan, but it’s all a part of the whole picture. It’s all connected.”