By Maureen Gilmer, IU Health senior writer, firstname.lastname@example.org
It was a pleasant Sunday evening, just after a family dinner, when 10-year-old Emery Johnson asked her mom if she could go for one more run in the neighborhood.
She’d already run twice earlier that day, about a mile each time, but she was eager to go out again. Emery had just joined her school’s running club.
She had barely made it past the four-way stop at the entrance to the cul-de-sac where she lived when she collapsed, her parents, Travis and Jessica Johnson, said.
If not for the attention of another child riding her bike nearby and a neighbor who is a nurse, Emery might not have made it home. The neighbor child alerted Emery’s parents, as the nurse who heard the commotion sprang into action, beginning CPR in the street where Emery had collapsed.
The Fort Wayne family would find out later that Emery suffered from an undiagnosed congenital heart defect, AAOCA, or Anomalous Aortic Origin of the Coronary Artery.
Riley Children’s Health heart surgeon Dr. Mark Rodefeld explains it this way: “She had a coronary artery that was running in the wrong direction. It was running between two bigger blood vessels, and the course of that artery put it at risk for getting smashed between the two bigger blood vessels.”
Even though Emery had always been active, it was only that Sunday evening back in August 2021 when her heart defect was revealed.
As she ran, the young girl’s coronary artery was getting pinched between the two larger blood vessels – enough to cut the blood flow to her heart and trigger an arrhythmia.
“People can live with these defects and not know,” Dr. Rodefeld said. “They are rarely diagnosed until someone has a sudden death episode.”
The difference here between life and death was fast intervention, he said, likening it to the experience of NFL player Damar Hamlin, who suffered sudden cardiac arrest on the field during a game last month.
“He didn’t have the same heart problem she did, but a quick response makes the difference between life and death.”
Hamlin received immediate medical attention, including revival with an AED (automated external defibrillator), and his life was saved.
Emery received CPR from a nurse who lived nearby, with support from a family member, before paramedics arrived.
As shocking as it was, Jessica Johnson said, “it happened in the right place, at the right time, with all the right people around.”
Paramedics connected her to an AED but did not have to use it, Johnson said, though Emery coded twice more, the last time just after arriving at a hospital in Fort Wayne.
Not surprisingly, tests revealed a problem with her heart, and hospital staff arranged for her to be taken by ambulance to Riley Hospital for Children in Indianapolis, recognized regionally (best in the Midwest) and nationally (sixth in the nation) for its pediatric cardiology program by U.S. News & World Report.
Emery arrived in the early morning hours of Aug. 30. She was sedated and on a ventilator for several days, while doctors waited for her body to get stronger.
During her time at Riley, Emery marked her 11th birthday with her siblings gathered on the other side of windows atop the Riley parking garage (due to Covid and flu visitor restrictions).
Heart Center nurse Julia Doyle Burgess remembers celebrating with the young patient over cheesecake, and Emery connected with her nurse so much that she named the bear she received in the hospital Julia Bear.
“Impacting each other’s lives is an unexpected opportunity that comes with being a pediatric nurse on the Heart Center at Riley,” Burgess said. “When working so closely with a patient and their family, we are able to turn a dark time into a time to find inspiration and meaning to life.”
Burgess said she received a card from Emery and her family saying that Emery wants to be a nurse at Riley someday because of her.
“My heart was filled with joy when I received that card. She is such a sweet little girl!”
On Sept. 14, Dr. Rodefeld, whom Emery’s parents call a “miracle worker,” performed open-heart surgery to repair Emery’s coronary artery defect. Five days later she was headed home.
The scar she carries is a reminder of her ordeal but also a reminder that she is a survivor, something Emery’s mom encourages other parents to embrace.
“Emery is extremely proud of her scar because it’s something that symbolizes how strong she is and how tough a battle she went through and won.”
The experience has left a lasting mark not just on Emery, but on her parents as well.
“Appreciate the gift of your child,” Travis Johnson said. “Never take them for granted. Tell them you love them, hug them, support them. We are lucky to still be able to do these things because we had a neighbor who was trained in CPR, a fire station just around the corner … and wonderful surgeons, doctors and nurses who all played a part in keeping our child alive.”
Emery, now 12, continues to get regular checkups to make sure her heart function is still strong, and her three younger siblings were tested to see if they carried the same defect, but they do not.
In September, Emery marked her one-year “heartiversary,” and though she has not returned to running, she is playing volleyball and taking dance lessons, her mom said.
In fact, there is no reason she can’t live a normal life going forward, Dr. Rodefeld said.
It was a freak thing that happened, he said, but the quick response made all the difference.
“People can live with these conditions and not know,” he said. “When an otherwise healthy young person collapses, especially in sports, a good number are related to this abnormal coronary artery condition. Some people can live their whole life and not have a problem. Some people have sudden cardiac death.”
As medicine and testing continue to improve, more of these conditions are being diagnosed, even in people who’ve never had an issue, he said. Emery was lucky to be in the right place with the right people around to save her life. “It’s a pretty amazing story.”
The Johnsons are now trained in CPR and encourage others to do the same. Contact the American Red Cross to sign up for a class.