Can you imagine holding your own heart in your hands?
That’s just what 15-year-old Parker Mayorgas did after receiving a life-saving heart transplant. But his story didn’t begin there.
At 2 years old, Parker’s mother, Melissa, noticed something amiss. Parker wasn’t meeting his developmental milestones like his older brother, and his balance seemed off. Eventually, Parker was diagnosed with a muscular disease, but specialists had trouble pinpointing the specific gene mutation. For 10 years, his family searched for an answer to his mysterious disease. After a trip to the National Institutes of Health (NIH), and two years later, they diagnosed Parker with Desmin-Related Myofibrillar Myopathy (DRM), a rare genetic disorder that affects the muscles in the body. The disease leads to muscle weakness, difficulty with movement and balance, breathing difficulties, and heart problems. Only 12 people in the world are diagnosed with this incredibly rare disease – there is no cure.
Since the heart is a muscle, Parker’s rare disease began attacking his heart. At 12 years old, he was diagnosed with heart failure. Parker began seeing specialists at Rady Children’s Heart Institute who prescribed a special combination of medications to treat his irregular heartbeat. He had to carry an automated external defibrillator device wherever he went. Travel, including a Disney Cruise to Alaska, was put on hold. By the end of January 2020, Parker was declining and something was amiss.
“I told my mom that I just didn’t feel well. I didn’t know what it was, but I knew something wasn’t right,” Parker says. “It was scary not to know what was going on with my own body. But then we got a call from my electrophysiologist, Dr. Matthew Williams, at Rady Children’s and he also noticed something amiss with my monitor that tracks my heart rhythms. So, we packed a bag and headed back to the hospital.”
At the hospital, he continued to experience atrial fibrillation (A-fib), an irregular and often very rapid heart rhythm that can lead to stroke, heart failure and other heart-related complications. To treat this, his care team used cardioversion therapy, or quick low-energy shocks, to restore his heartbeat to normal.
“There were so many people in the room; teams outside of the room on standby to save his life if needed,” says Parker’s mom, Melissa. “I will never forget that feeling. It really took my breath away. It was so scary to see my child go through something like that, but I trusted the team at Rady Children’s and knew we were in good hands.”
By March 2020, Parker was in acute heart failure and episodes of A-fib were getting harder and harder to control. On top of this, his medications were making him sick and weren’t helping him as they should. Vomiting led to a bought of pneumonia in the Hospital and he lost 30 pounds in a matter of weeks. He was declining rapidly and the team at Rady Children’s knew something more had to be done to save Parker’s life.
Parker hears his new heart for the first time.
Dr. John Nigro and Dr. Victor Pretoria, cardiothoracic and heart transplant surgeons at Rady Children’s and UC San Diego Health, warned the family that since Parker was malnourished and very sick, surgery was risky. However, it was the only chance Parker had at survival. After being on the transplant list for 5 days, his transplant coordinator came into the room with good news – a compatible donor heart was available. After an enthusiastic, “Yes!” from Parker and his family, he was prepped for surgery.
On October 30, 2020, Parker received a new heart. He gained back the weight he had lost and recovered well. But before he went home, he had a unique request of his care team. Parker wondered if he could hold his old heart in his hands. The team had never been asked his request before but granted Parker’s unique – and brave – request.
Parker is now living life to the fullest and recently received his driver’s permit!
Today, Parker is over 6 feet tall and growing like a weed, says his mom. He lives the life of a normal sophomore in high school, like getting his driver’s learners permit and hanging out with friends. He still can’t climb stairs or try out for the basketball team, but life is good, says Melissa.
“We had a remarkable experience at Rady Children’s. The team is top-notch,” Melissa says. “There was so much love for my son. We still see the nurses that cared for him in the Cardiothoracic Intensive Care Unit (CTICU) and bring cookies to thank them for everything.”
Rady Children’s nationally-ranked Heart Institute is a specialized center that provides comprehensive cardiac care for children with heart conditions. The Heart Institute is equipped with the latest technology and advanced diagnostic and treatment capabilities, including cutting-edge imaging equipment, advanced surgical techniques, and innovative research programs. The team at the Heart Institute is dedicated to providing the highest level of care to children with heart conditions, like Parker, and their families, with a focus on personalized, family-centered care. Learn more at rchsd.org/programs-services/heart-institute.