Looking at 8-year-old Drew Yasutake today, you’d never be able to guess that he was born with a congenital heart defect and had to undergo open heart surgery when he was just a few days old.
Drew was born with a relatively rare heart condition – pulmonary atresia with intact ventricular septum. The valve that controls blood flow from his heart to his lungs hadn’t formed properly.
About eight hours after Drew’s birth, his mother Vivian Vu’s obstetrician came to check on them and noticed that Drew was turning blue. Doctors quickly diagnosed his condition, and his parents were told he would need to undergo major surgery.
The surgery was successful and today he is an energetic kid who plays basketball and loves to sing and dance.
For the past eight years, Drew has been treated at Lucile Packard Children’s Hospital Stanford. Last month, Drew was a “patient hero” at Stanford’s “Summer Scamper” race, which raises funds for Packard Children’s Hospital.
As a patient hero, Drew helped count down the start of the races and represented the children the hospital treats.
Despite his young age, Drew is comfortable talking about his condition and explaining it to others.
“When I was a baby, I was only eight hours old when I was turning blue,” he said confidently in an interview.
According to his mother, he’ll explain to classmates that he has a “special heart” and show them the scar on his chest from his surgery, which he calls his “zipper.”
“I’m very proud of him for not being afraid,” Vu said. “He says it very matter-of-factly.”
Drew’s father, Andy Yasutake, similarly said he’s proud his son is willing to tell his story and teach others about his condition.
“His willingness and confidence to share his story and talk about his ‘zipper’ on his chest and not be embarrassed, it’s been really cool to see,” Yasutake said.
Drew just finished second grade at the Khan Lab School in Mountain View, a private school associated with Khan Academy. Over the years, he and his family have organized events at the school to teach the other students about congenital heart conditions.
Paying it forward
In past years, Drew and his classmates have made bedside activity bags with toys and games for children in the Betty Irene Moore Children’s Heart Center at Packard Children’s Hospital.
Many children with congenital heart defects end up staying in the hospital for long periods of time, Vu said. For Drew, the bags were a chance to bring some joy into their lives.
“It’s fun for me that all my classmates are making all these bags so the patients in the hospital can have fun, instead of getting bored,” he said.
Last year, Drew and his classmates also raised $3,500 for the hospital’s heart center.
“It teaches the kids at this young level to really give back and have compassion,” Vu said. “You never know someone’s story.”
At some point, Drew will need to undergo another major surgery that will, among other things, fix his pulmonary valve. Every six months he spends approximately half a day at the hospital getting tests and meeting with doctors about his condition.
For Vu, spreading awareness about congenital heart defects and supporting families whose children are diagnosed has become something of a mission.
“Pain defines your purpose, and I just cling to that,” she said.
Over the past eight years, she has connected with many other “heart families.” In one case, a family from Kansas stayed with her while their baby daughter was treated at Packard Children’s Hospital.
Congenital heart disease is more common than many might assume, with nearly 1 in 100 newborns diagnosed.
Soon after Drew’s birth, Vu began seeking out other families in similar situations and received immediate support. Strangers came by to bring food and share their own stories.
Even though she hasn’t kept in touch with everyone over the years, she said it meant a lot to her during a particularly difficult time.
“I will always treasure that, because that was so touching,” Vu said. “If I can do the same thing for someone else … that’s what it’s about.”