When John L. Latsha was born in 1947 at Geisinger Hospital in Danville, Pennsylvania, doctors quickly realized something was wrong. He was a “blue baby,” born cyanotic with blue lips, skin, and fingernails—a sign of a serious congenital heart defect. At the time, medical options were limited. His mother was told to “take him home and love him,” because he likely wouldn’t live past age twelve.

Today, at 78 years old, John is not only a survivor—he’s a mentor, advocate, husband, father, grandfather, and Senior Ambassador with the Adult Congenital Heart Association (ACHA).

Living With Tetralogy of Fallot

John was born with Tetralogy of Fallot (TOF), one of approximately 14 recognized congenital heart defects. Congenital heart defects (CHDs) occur in about 1% of live births in the United States—roughly 40,000 infants each year. Today, an estimated 2 million people in the U.S. are living with CHDs.

But when John was a child, survival into adulthood was far less common.

“There are more adults living with congenital heart defects now than there are children,” he explains. “When I was a child, you just didn’t live that long.”

His first open-heart surgery came in 1958: a Blalock-Taussig-Thomas (BTT) shunt. A second surgery, a Waterston shunt, followed in 1967. These procedures helped but did not fully repair his heart.

Everything changed in 1980. As he prepared to marry his wife, Debbie, a new cardiologist connected him with a surgeon specializing in TOF repairs. At age 33, John underwent a “total repair” surgery at the University of Alabama.

The result was life changing.

“A year after surgery, I could run up four flights of stairs, two at a time, without breathing hard,” he says. “I used to tell my friends, ‘So this is what it feels like to be normal.’”

“We Are Repaired—Not Fixed”

John is clear about one thing: people born with CHD are never truly “fixed.”

“We are repaired—much like an automobile,” he says. “There are always other things that can go wrong.”

In 2005, he underwent pulmonary valve replacement surgery. Five years later, he received an Implantable Cardioverter Defibrillator (ICD) to manage arrhythmias and episodes of ventricular tachycardia.

Throughout his journey, specialized care has been essential. John emphasizes the importance of seeing a cardiologist certified in adult congenital heart disease. Not every cardiologist is trained in the complexities of repaired congenital defects.

That’s where ACHA plays a critical role.

The Power of “Adult” in Adult Congenital Heart Association

For John, the word “adult” in the Adult Congenital Heart Association carries deep meaning.

“All of us are survivors,” he says. “We have lived through various problems and techniques.”

ACHA provides research funding, educational webinars, a national directory of certified ACHD cardiologists and medical centers, and a Peer Mentoring Program. John serves as a Senior Peer Mentor, supporting others—especially those with Tetralogy of Fallot—who are navigating surgeries, uncertainty, or new diagnoses.

Importantly, peer mentors do not provide medical advice. Instead, they offer lived experience.

“I don’t try to push my problems onto them,” John explains. “I tell them how I’m surviving and living with my CHD.”

For many, simply knowing they’re not alone makes all the difference.

A Different Conversation During Heart Month

February’s Heart Month often centers on diet, exercise, and prevention. But for those born with CHD, the conversation is lifelong and layered.

John has managed arrhythmias, multiple surgeries, and the physical setbacks that came during the COVID-19 pandemic, when he had to pause regular exercise. Now one of the older members in the ACHD community, he reflects with gratitude on how far medicine has come.

What gives him hope?

“The surgical techniques have improved tremendously,” he says. “But people need to make sure they see a certified congenital cardiologist.”

Access to specialized care, ongoing monitoring, and community support are vital for long-term survival and quality of life.

A Life Once Considered Impossible

Perhaps the most powerful part of John’s story is this: the boy who wasn’t expected to live past twelve has lived a full and vibrant life. He went to college. He built a career. He married. He has a son and four grandchildren.

His journey is a testament not only to medical advancement but to resilience—and to the importance of community.

Through mentorship and advocacy with the Adult Congenital Heart Association, John continues to ensure that others walking the CHD path feel informed, supported, and empowered.

As Heart Month reminds us to care for our hearts, John’s story reminds us of something deeper: congenital heart disease doesn’t define a life—it deepens it.