As a child growing up in Guatemala, Juan Pablo was told by his parents that he was born with a little hole in his heart that was patched up. “It wasn’t until I was a teenager that I figured out that what I had was not that simple.“
Juan Pablo was born in 1995 with Tetralogy of Fallot (ToF), a condition involving four different congenital heart defects. With no pediatric cardiac surgeons in Guatemala at the time, Juan Pablo’s parents took their newborn son to Switzerland for treatment, which included open heart surgery to remove his pulmonary valve. He went on to lead a normal, healthy childhood.
As he matured, Juan Pablo began to ask questions about his condition and his past. He found out that his surgery in Switzerland was performed by Aldo Castañeda, MD, a native of Guatemala who had retired in 1992 as Chief Cardiac Surgeon at Boston Children’s Hospital. Juan Pablo also discovered that Castañeda was back in Guatemala running the country’s first pediatric cardiac care program at Unidad de Cirugia Cardiovascular Pediatrica de Guatemala (UNICARP).
His curiosity led him to visit UNICARP in 2012, where he learned more about his own condition and began volunteering regularly, observing surgeries and organizing fundraisers. Along the way, Juan Pablo found his calling to become a cardiologist and treat kids with heart conditions like his.
Open-heart surgery…then medical school
Before he could start pursuing a career in medicine, Juan Pablo had to focus on his own condition. With no pulmonary valve, his heart was enlarged from having to deal with a larger-than-normal volume of blood. Castañeda urged Juan Pablo’s parents to visit Boston Children’s for an examination. They contacted Boston Children’s International Center and after sharing files and completing intake forms, they flew to Boston with their son in December 2012.
Juan Pablo’s exam revealed a diagnosis more serious than the family had expected: his heart was dangerously enlarged, and he needed a synthetic pulmonary valve soon or his heart might not return to its normal size.
“I got out of the clinic, and I cried in the bathroom. My whole family was very shocked and sad that I needed open heart surgery again. I knew first hand from the hospital the risks of open heart surgery…I was scared.”
In May 2013, Boston Children’s Chief Cardiac Surgeon Pedro J. del Nido, MD, performed a pulmonary valve replacement on Juan Pablo while his parents, brother, sister, cousins and friends all sat waiting in the hospital. The surgery was a success, and he was discharged from the hospital in four days.
During the six weeks that Juan Pablo stayed in Boston to recover, he chose not to focus on the fact that he was missing his high school graduation with his friends. Instead, he celebrated the fact that he was alive and had a newfound purpose. “Without this experience, I would have been a different person. Medicine has enhanced my whole life and its meaning. I wouldn’t be so passionate about it if I didn’t live through this.”
Now two years post-op, Juan Pablo is in his second year of medical school and continues to be a dedicated volunteer at UNICARP, often explaining conditions and treatments to families when the physicians don’t have time.
“In Boston I was treated like family, not like a patient. I went back to Guatemala, and I gave a lot of suggestions to the public hospitals there about how to treat their patients. Being a patient myself helped me see the other side of the coin.”
Juan Pablo plans to become a pediatric cardiac surgeon treating congenital heart defects in Guatemalan children. “Castañeda and del Nido are my role models; they are distinguished, humane and empathetic, and they saved my life,” Juan Pablo says. “If I got a second chance in life, why shouldn’t other people get theirs? My experience gave me a purpose to be here in this world, and I hope to fulfill that purpose.”