Federal Way firefighters rally to support student with heart defect

Published 3:19 pm Friday, April 3, 2015

High school softball player Tatiana Jones almost didn’t participate in a health screening that may have saved her life.

But because she did, the 16-year-old became one of seven students who were required to see a cardiologist based on results from the Nick of Time Foundation event last year at Decatur High School. Thousands of students in the Federal Way school district were tested.

After numerous tests and scans, the Decatur junior would later discover she had a genetic abnormality in her heart called anomalous aortic origin of the coronary artery, commonly known as “AAOCA.”

“I feel like God put it in my pathway,” Tatiana said about the health screening.

Although rare, Tatiana’s heart problem is a condition where her heart has an artery coming out of the wrong location on the main blood vessel, the aorta. It is the second leading cause of sudden cardiac death in children and young adults who play sports, according to the Children’s Heart Foundation. And in order to continue playing sports, her doctor requires her to have an AED (automated external defibrillator) onsite for every school sporting event, including practices.

But AEDs can cost upwards of $1,400 and although every Federal Way school has them, they’re meant to serve more than one student.

“It’s getting more and more common that people buy their own AEDs,” said South King Fire and Rescue Capt. Jeff Bellinghausen, noting that every school in the district has an AED on-site thanks to Project Jean. “Every minute earlier that someone [receives a defibrillator shock], their survival rate increases by 10 percent.”

Because of this, Bellinghausen and the South King Firefighters Foundation partnered with Decatur High School in an effort to raise enough money to buy Tatiana her own AED.

“She needs it whenever she’s at a school sporting event and … the school has AEDs but she needs it not just when she’s at sporting events, she should have this wherever she goes,” Bellinghausen said, adding that the excess funds from the fundraiser will be donated to the Nick of Time Foundation.

Tatiana is currently staying busy playing third base for the Decatur girls varsity fastpitch team.

By working together with school nurse Sue English, Decatur High School Principal David Bower and the Firefighters Foundation, Tatiana’s family set up a gofundme.com account “AED for Tatiana” to help raise money for the life-saving device.

“It’s public-private partnerships, such as this one with the schools, the fire department and the Nick of Time Foundation, that provide resources to students and families and the end result is kids are safer,” Bower said.

Tatiana has kept active most of her life. When she’s not playing sports in school, the Running Start student lifeguards at the Federal Way Community Center or runs the Saghalie Middle School track with her family.

But now, her mom tells her to walk the track because she doesn’t have an AED.

“It’s a constant worry in my mom’s mind,” Tatiana said.

Andrea Stevenson Jones, Tatiana’s mom, said the Nick of Time Foundation testing was a great opportunity because she never would have known her daughter had the defect.

“I took her to do the screening and the testing came up with some odd readings so they asked us to progress further with her doctor,” Stevenson Jones said. “They took her in and at first thought it was a blood pressure situation.”

And then, they deemed her thickened artery wall as the result of poor diet and fitness — issues that could be resolved if she just exercised more.

However, after undergoing an MRI and positron emission tomograph scan, Tatiana’s doctor told her she had to stop exercising unless she had an AED present.

In fact, she said her doctors knew very little about the condition and suggested surgery was the only treatment option, but it was also pretty risky.

“It’s a risk we’re taking but she’s young and she loves her sports and she’s been doing that for a long time,” Stevenson Jones said. “We’re thankful for the school, Nick of Time and the fire department and everyone willing to help out in this situation. We’re blessed that we know about it now and it will be great to have an AED that’s hers.”

The condition explains some health problems Tatiana had experienced, such as why one side of her body would swell up.

Now, she’s wondering if her previously-diagnosed asthma is also a symptom of anomalous aortic origin of the coronary artery.

Ultimately deciding not to undergo surgery at this time, Tatiana is enrolled in a study at the Seattle Children’s Hospital and attends meetings twice a month where doctors check her heart and ask her a series of questions.

As she continues her life like any other active high school/Running Start student, Tatiana looks forward to maintaining a healthy lifestyle and studying to become a neonatal nurse once she graduates.

“It’s a blessing because lately I’ve been a lot more cautious and aware of things that could happen,” Tatiana said, adding that she recommends everyone, not just athletes, get tested for heart conditions early on.

For more information or to donate towards Tatiana’s AED, visit www.gofundme.com/qgtee68.