"My Chest Hurts" A Teen's Brush With Sudden Cardiac Death

A Mother's Intuition Saves Her Son: A Teen's Rare Heart Condition and the Fight for Survival

In a story of unwavering maternal instinct and a medical mystery, a 13-year-old boy's life was dramatically altered when a seemingly simple complaint of chest pain turned out to be a harbinger of a rare and life-threatening disease.

It all began in December 2023, when Micah Clayborne, son of Dr. Brittany Clayborne, came home from school and declined a friendly game of football due to chest pain. "He said, 'My chest hurts,'" Clayborne recalled. "I was like, 'What do you mean your chest hurts?'" These words immediately triggered alarm bells for Dr. Clayborne, who has a significant history of cardiac issues herself.

Dr. Clayborne's own journey with heart disease began during Micah's premature birth at 34 weeks in 2010, when she suffered a heart attack and was diagnosed with peripartum cardiomyopathy. Over the years, she underwent numerous procedures, including the implantation of a pacemaker, defibrillator, and LVAD pump, culminating in a heart transplant in 2018. Because of this family history, Micah had been regularly monitored by a cardiologist, with no apparent concerns.

However, Dr. Clayborne trusted her gut feeling. The very next day, Micah was at the cardiologist's office by 10:30 a.m. Within 45 minutes, he was admitted to the cardiac ICU at Children's Medical Center Dallas.

Tests revealed the shocking truth: Micah's heart was functioning at a mere 7%. He was, as his mother described, "very close to sudden cardiac death." Just like his mother, he required a pacemaker and defibrillator, and the grim reality was that a heart transplant was also in his future.

The emotional impact on Dr. Clayborne was profound. "When they tell you that you are going to die, you're like, 'OK, I can fight this,' but when they tell you your child is going to die, that's a whole different set of emotions. Not only are you helpless, you are hopeless," she shared.

The Unveiling of Danon Disease

Determined to understand the cause of Micah's sudden heart problems, doctors conducted extensive testing. The diagnosis was incredibly rare: Danon disease, a genetic condition affecting approximately 300 families worldwide. Even more surprising, further testing revealed that Dr. Clayborne also carried the gene. The Claybornes are reportedly the only documented African-American patients with this condition.

Dr. Rakesh Singh, Medical Director of the Pediatric Heart Failure and Transplantation Program at NYU Langone's Hassenfeld Children's Hospital, explained that Danon disease is caused by mutations in the LAMP2 gene, which disrupts the body's ability to eliminate cellular waste. This leads to thickening of the heart muscle, ultimately causing heart failure.

Key facts about Danon Disease:

• Caused by mutations in the LAMP2 gene.
• Affects the body's ability to remove cellular waste.
• Results in thickening of the heart muscle.
• Often requires heart transplantation in the patient's 20s.
• May also present with neurological issues or eye problems.

A Race Against Time and an Unbelievable Encounter

After the initial procedures, Micah was placed on the national waiting list for a heart transplant. In October 2024, the call finally came. "I was like 'Yes, this is it, I get a second chance,'" Micah exclaimed upon hearing the news.

As Micah underwent the transplant surgery, Dr. Clayborne waited anxiously. A delay during the procedure sent her into a panic. Micah's heart had been removed, but the donor heart was still minutes away.

In an unbelievable twist of fate, Dr. Clayborne stepped onto an elevator and instinctively held the doors open for a man wheeling a container. "I looked down and I said 'I think that's my son's heart,'" Clayborne recalled. The man smiled, and rushed towards the OR. It was Micah's heart.

Transplant Teenz: Building a Community of Hope

Micah's transplant was ultimately successful, and he is now thriving, back in school and pursuing a new passion. Recognizing the lack of support for teenagers facing organ transplants, Micah and his mother launched Transplant Teenz, a virtual community connecting teens nationwide awaiting organ transplants.

Transplant Teenz provides:

• Virtual group meetings
• Online events
• Educational resources

"Being a teenager is when you're starting to become an adult, and things become more stressful," Micah said. "My hope is to give teens a group they can go to that I had never had." Micah hopes to reach 100 participants by the end of the year.

Micah's story is a testament to the power of a mother's intuition, the advancements of modern medicine, and the resilience of the human spirit. It's also a reminder that even in the face of daunting challenges, hope and community can flourish.

Tags: heart health, child health, heart attack, cardiomyopathy, heart transplant, premature birth, cardiac issues, Dr. Clayborne, Micah, chest pain, Danon disease, genetic condition, organ transplant, Transplant Teenz

Source: https://www.cbsnews.com/news/danon-disease-teenage-heart-transplant/