When Thomas Glenn was born in 1990 with hypoplastic left heart syndrome (HLHS), his parents were given two choices — make him comfortable until he died or have the first of three open-heart surgeries. However, the physicians warned, the few infants who had survived surgery for HLHS had not lived long enough to go home.
His parents chose surgery.
“I’m now 30 years old, and over 26 years have passed since my last open-heart surgery. I have been fortunate enough to live a nearly normal life, and I’m now a board-certified pediatrician and currently a second-year pediatric cardiology fellow,” he says.
Dr. Glenn presented the 8th Annual Stockman Lecture in October at the American Academy of Pediatrics (AAP) National Conference and Exhibition. He told the physicians who watched his virtual lecture that they can make a huge difference in how resilient their patients are. He credits a pediatric cardiologist with encouraging him to believe he could pursue as normal a life as possible.
“She dedicated most of my first visit with her to talking to me as a person,” he says, “asking me how I was doing, rather than just skipping to the results of the stress test or the echo [cardiogram].”
His cardiologist asked about his dreams and encouraged him to set goals.
“For me, this was huge,” he says. “It presented this new feeling of motivation and drive that I still wear on my shoulders to this day.”
Many children with HLHS are bullied by others because they cannot participate in sports and other physical activities, Dr. Glenn says. Many are anxious and depressed as they deal with uncertainty about how long they will live.
“Mental health issues remain the elephant in the room for individuals living with any chronic illness,” he says.
Support from family and medical teams can help a patient be more resilient, he says.
“No one can go through their life with a chronic illness alone,” he says. “I realized very early in my young adult life that I needed to build a community of people around me that would help me get through the difficult times and be there to enjoy the good times with.”
He encourages pediatricians to help their patients and families find resources that will support them.
An excellent resource, he says, is the Roadmap Project, sponsored by the ABP Foundation and administered by the Learning Networks Program of the Anderson Center for Health Systems Excellence.
Dr. Glenn also encourages pediatricians to help patients transition to adult care when the time is right.
The transition is easier, he says, when patients understand and take ownership of their care, which pediatricians are in the best position to encourage.
“By the time I was 14,” he says, “I was expected to know the names, dosages, and times of all my medications. I knew the name of my cardiac lesion and could explain what it actually meant.”
He doesn’t tell all of his cardiac patients about his own diagnosis because sometimes it is best to separate his personal and professional life. Still, many know from his social media posts and his work with the National Pediatric Cardiology Quality Improvement Collaborative.
“When parents get blindsided with the diagnosis at 25 weeks of pregnancy, they usually go to the internet,” he says. “Eventually, they find social media pages of people living with HLHS. If a mom or dad sees people who are 25 or 30, living a normal life, that gives them hope.
Photo: Dr. Glenn celebrates on a 14-mile hike with a 2,600-foot elevation change in Glacier National Park in Montana. “Hiking reminds me that anything really is possible,” he says