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Courtesy Jordan.Nicholson.Photography.

AJ Hwangbo was a happy-go-lucky 6-year-old without a worry in the world until mid-November when he developed a life-threatening heart condition. While specialists at Seattle Children’s Hospital helped AJ heal physically, the young boy struggled to bounce back emotionally. But, AJ’s joyful spirit returned after hospital staff arranged for him to meet his hero – local artist Macklemore.

“The luckiest or unluckiest boy”

Before he became ill, AJ’s mom Yoo-Lee Yea said he was an especially social first-grader and a frequent jokester. But on the morning of Nov. 12 he was quieter than usual. Later that day AJ threw up at school and by the evening he had a high fever. AJ’s primary care doctor said he likely had a virus and should feel better in a few days.

But Aj’s health only worsened. The next day he wouldn’t sit up or stand. In the evening, AJ vomited more than a dozen times.

“I knew something was very wrong,” his mom said.

At 2:30 a.m., AJ’s parents took him to the emergency room at Children’s. Doctors discovered his heart beat was abnormal.

“I knew this was something much bigger than a regular virus, but I also knew AJ was in the right place,” Yea said.

AJsickAJ was diagnosed with acute viral myocarditis, most likely due to a virus that affected his heart function. When he arrived at the ER his heart was so inflamed it filled half his chest cavity. The chambers of his heart were not pumping blood properly to his other organs. Without immediate intervention, AJ could have suffered permanent damage or died.

“Things were dire,” Yea said. “For about a week we did not know if he would make it or if he would ever be the same.”

To save AJ’s life, cardiothoracic surgeon Mike McMullan, MD, inserted a ventricular assist device – a Thoratec CentriMag pump – in his chest. The device pumps blood for the heart, allowing it to rest and recover. Over the next few weeks AJ’s heart grew stronger.

“He’s either the luckiest or unluckiest boy I know,” McMullan said. “He’s recovered remarkably well from a rare condition.”

Emotional healing

While AJ’s cardiac team reported he was recovering physically, his mother still believed something was wrong with her son. AJ only communicated with an occasional nod and wouldn’t eat or smile.

“Most of the time he would look right through me,” Yea said. “We didn’t know what was going on in his psyche.”

Doctors tested AJ for neurological damage but they found nothing to explain his withdrawn demeanor.

That’s when Alisa Van Cleave, MD, stepped in to help. Van Cleave is an advanced care specialist who worked with AJ’s family to help him recovery emotionally.

“This disease comes on in no time flat,” Van Cleave said. “One moment AJ was a normal 6-year-old and 36 hours later he was on death’s door. That’s incredibly difficult for anyone to deal with, but for a child who’s been healthy his entire life to be in the ICU and have heart surgery, he was obviously very emotionally scarred. He was completely shut down. He was not ready to open back up to the world.”

Van Cleave discussed AJ’s situation with Children’s Pediatric Advanced Care Team (PACT), which addresses the quality of life of children facing serious illnesses. She knew AJ loved music and his favorite artist was Macklemore, so when a donor gave Children’s two tickets to Macklemore’s sold-out concert in December, Van Cleave offered them to AJ’s family.

“We were concerned for his life,” Yea said. “But when I told AJ, he had the biggest smile on his face. He was so happy. That’s all I needed to do to go through with it.”

But PACT members Brianna Eigner and Matt Dessert wanted to do even more for AJ. They wanted AJ to meet his favorite artist. They reached out to Macklemore’s management team and got AJ backstage passes.

“I just thought ‘Maybe we can take this a little further,’” Eigner said. “This kid had gone through so much. My heart told me this was the right thing to do.”

The turning point

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Courtesy Jordan.Nicholson.Photography.

The PACT team’s outreach efforts paid off. At the show, AJ and his mom were delighted to be escorted backstage to Macklemore’s “friends and family” room where the 6-year-old got to meet his hero.

“It was such a great experience,” his mom said. “Macklemore and his fiance were so kind and gentle with him. They gave him gifts and joked with him. Macklemore even told AJ that he was planning a surprise visit to the hospital so he would see him again soon.”

AJ enjoyed the concert from the very front, nodding along to his favorite songs.

“He just lit up,” Yea said. “This was something special for him. It really boosted his spirits.”

After the concert, AJ’s behavior shifted dramatically. While he had hardly been speaking at all, he started saying full sentences the next morning. Instead of lying in bed all day, AJ got up and played with his legos for over an hour. He even fed himself for the first time in weeks.

“I think getting out of the hospital and seeing that fun is still possible was incredibly reassuring for AJ,” Van Cleave said. “Perhaps he was still afraid life was never going to get back to normal. But Macklemore told him he was strong and he was going to get better.”

And AJ did get better. He was discharged from Children’s on Dec. 18 – just in time for Christmas. But just before AJ left Macklemore fulfilled his promise, visiting the hospital and asking for him specifically.

AJToday, doctors are confident AJ will make a full recovery. His mom is convinced that Van Cleave, the PACT team and Macklemore deserve credit for his mental healing.

“If Children’s only focused on the physical aspects of our patients we wouldn’t be the world-class hospital that we are,” Van Cleave said. “Family-centered and patient-centered care requires thinking about the social, emotional and spiritual affects of an illness too.”

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If you’d like to arrange an interview with AJ’s family, please contact Children’s PR team at 206-987-4500 or press@seattlechildrens.org.