Giant Cell Myocarditis: Jackson’s Story

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When Jackson was 13, he suffered a shocking, unexpected medical crisis. In just a week, he went from being an active student athlete participating in a soccer tournament to needing life support. It was the result of an extremely rare and life-threatening disorder known as giant cell myocarditis. After a long journey, Jackson is now a typical 15-year-old who enjoys sports and is planning for his future.

Jackson smiling Jackson was always healthy — and always competing in sports. His two favorites were soccer and ice hockey. In November 2016, he returned home to Wallingford, PA, from a soccer tournament in North Carolina. He thought he'd caught a cold because his symptoms were mild at first, just some sniffles and a dry cough.

But in a matter of six days, his symptoms worsened. He felt increasingly fatigued, his stomach hurt, and it became difficult to breathe. His parents took him to Children’s Hospital of Philadelphia (CHOP) Urgent Care, Brandywine Valley, in Glen Mills, PA.

Initially, doctors suspected Jackson had pneumonia and prescribed antibiotics to fight the infection, steroids to open his lungs, and rest.

But less than 24 hours later, Jackson’s condition quickly deteriorated. “His whole body was just shutting down,” says his mother, Kira. When his parents contacted CHOP Urgent Care again, staff instructed the family to take Jackson to CHOP’s Emergency Department (ED).

In the ED, the team suspected Jackson was suffering from a cardiac issue and transferred the teen to the Cardiac Intensive Care Unit (CICU) for a more detailed evaluation. Matthew O’Connor, MD, Medical Director of the Heart Failure and Transplant program and his team were consulted.

“Jackson’s health was deteriorating quickly,” Kira says. He was in respiratory distress, heart failure, and his heart function was diminished.

A rare and life-threatening disorder

Dr. O’Connor and the team knew they didn’t have a lot of time. It was critical to identify the cause of Jackson’s condition as quickly as possible.

Jackson was placed on extracorporeal membrane oxygenation (ECMO), which would support his heart and lungs and keep him alive while doctors worked to identify what was causing Jackson's symptoms and treat the underlying problem.

Within 24 hours of arriving in the CICU, and after a heart biopsy, Jackson’s care team was able to diagnose his condition: an extremely rare and often fatal form of giant cell myocarditis.

“The fact that the CHOP team even knew to do the biopsy — they caught it early and it saved his life,” Kira says.

Giant cell myocarditis is a rare autoimmune disorder that attacks the heart muscle (myocardium) and causes severe inflammation. The disorder progresses rapidly, can lead to heart failure, and many diagnosed with it will eventually need a heart transplant. The cause of giant cell myocarditis is currently unknown.

Dr. O’Connor and the medical team worked quickly. Jackson was given medication to reduce the extreme inflammation in his heart, and he remained on ECMO in critical condition for two weeks until his heart was strong enough to beat on its own. When Jackson was well enough to be taken off of ECMO, his team carefully monitored him and adjusted his medications as needed.

A slow recovery

The first weeks of recovery were challenging for Jackson. Before his sudden illness, he'd been an avid athlete. Afterward, however, he needed intense therapy to relearn basic tasks like walking and feeding himself.

We would not have been able to get through that difficult time without the support staff at CHOP. The nurses, the therapists were just so wonderful with his everyday care.

After a month, Jackson moved out of intensive care and was cleared to go home. In the early months after the incident, Jackson returned to the hospital every two weeks for monitoring. Over time, the check-ups became monthly as his strength grew. Now, two years later, Jackson’s appointments have stretched to once every six to eight weeks. While his heart function is not completely normal, it continues to steadily improve.

Jackson’s condition is managed with a combination of medications to improve his heart function and suppress his immune system. The precise dosages are monitored and adjusted as needed.

“His recovery will be ongoing,” says Kira. “We’ve had some setbacks and challenges along the way, but we are heading in the right direction.”

Jackson also had a defibrillator implanted at the recommendation of Maully Shah, MBBS, Medical Director of the Electrophysiology and Heart Rhythm Program. The defibrillator was implanted due to Jackson’s history of ventricular arrhythmias during his hospital course. This device will help Jackson’s heart to return to its normal rhythm if this should occur again.

Embracing change and moving forward

Jackson is now 15 years old and, in many ways, is a typical teenager. While he hasn’t been cleared to play contact sports , his medical team has worked with him to ensure sports still play a major role in his life. He was medically cleared to play golf and has shown a natural talent for the sport.

“Golf has been very therapeutic for Jackson — and he’s doing quite well at it and showing a lot of promise," Kira says.

In addition to competing in golf tournaments, Jackson also enjoys playing touch football and basketball with his friends. He also has a job as an ice hockey referee to stay involved in the game.

“Dr. O’Connor has been wonderful clinically, but has also been very good in providing emotional support," Kira says.

Jackson is able to experience as many activities as possible to allow him to be a normal teenager.

Jackson maintains a forward-thinking attitude and outlook on his life. He won’t let his health scare define him. As his father, Dave, explains, “He’s been very good at moving on and staying positive.”

Jackson says, “I just look at this as a distant memory. Focusing on college is my main goal right now; and I definitely want to play Division 1 golf.”

Jackson’s family is grateful for the treatment and care Jackson continues to receive at CHOP, and they understand the importance of research for future breakthroughs.

“We hope Jackson’s case will help pave the way for other patients down the road,” says Kira. “Whether it’s some of the therapies that were used or the experience we had.”

For now, Jackson is back to school and doing what he loves. As for sports, life and the future, Jackson has one consistent thought: He's in it to win it.

2019 Philly Spin-In

Jackson is a patient ambassador for the 2019 Philly Spin-In. Join us at Philly Spin-In — a high-energy, indoor team cycling party to change and save the lives of children with heart disease. It truly is a big workout to help little hearts! Sign up your team for one of the three four-hour, relay-style sessions:

  • Saturday, March 9, 2019: 3-7:00pm
  • Sunday, March 10, 2019: 8 a.m - noon
  • Sunday, March 10, 2019: 2-6:00pm

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