Like a lot of 8-year-old boys, Gustavo loves cars. And graphic novels. And Marvel Comics characters, especially Iron Man. But unlike other kids, Gustavo shares something unique with his favorite superhero: a heart that beats thanks to medical intervention.
In the case of Iron Man, it’s an arc reactor that prevents shrapnel in Tony Stark’s chest from piercing his heart. For Gustavo, it’s a transplanted heart.
A scary diagnosis
In April 2019, just before Gustavo’s sixth birthday, what seemed like a harmless stomach bug escalated into emergency admittance to the ICU at a hospital in Gustavo’s hometown of San Juan, Puerto Rico. An undetected viral infection had damaged his heart, leaving it functioning at just 30 percent.
“Gustavo was a very healthy boy and this came on suddenly,” says his mother, Diana. “He never had any symptoms. In just hours we went from the pediatrician to the emergency room to ICU.”
Doctors informed the family there was nothing more they could do for their son in Puerto Rico. Gustavo needed a heart transplant, but there were no hospitals on the island equipped to perform the procedure on a child. Diana and her husband, José, began researching the best hospitals on the U.S. mainland; meanwhile, friends and neighbors recommended Daniel Velez, MD.
- “We talked to Dr. Velez on the phone. He was very sincere and honest. Like an open book.”JoséGustavo’s Dad
Not only had Velez worked at the same facility in Puerto Rico where Gustavo was being treated—a hometown connection—but he was now the chief of Cardiothoracic Surgery at a mainland hospital whose name came up again and again in the family’s search for a pediatric heart center: Phoenix Children’s Hospital.
“We talked to Dr. Velez on the phone,” says José. “He was very sincere and honest. Like an open book. He told us ‘This is what we can do for Gustavo and this is what Phoenix Children’s can offer you and this is how we’ll take care of him.’”
“Four days later,” says Diana, “we decided we’re going to Phoenix.”
A 3,000-mile journey
In June 2019, Gustavo was transferred from Puerto Rico to Phoenix Children’s by air ambulance. His family—Diana, José and Gustavo’s older sister, Natalia—joined him. Two weeks after Gustavo arrived, he was intubated, and after medications did not improve his heart function, he was approved to be listed for transplant.
While he waited for a donor heart to become available, doctors implanted a Berlin Heart, a temporary mechanical heart. The Berlin Heart is attached to a huge cart and must be plugged into an electrical outlet most of the time. Gustavo’s mobility was limited, and he couldn’t spend much time outside of his room. He survived with the Berlin Heart for 14 months, his family by his side every day, his parents sleeping next to him each night.
The wait ended on August 22, 2020.
“Dr. Velez called us personally to tell us that a heart was available,” Diana recalls. “Gustavo always wears a bracelet with a cross on it that he got from José’s mom. I was with Gustavo when we received the news. He turned to me and said, ‘Know what, Mom? Last night I held the cross on my bracelet and prayed to God to ask for a new heart. And now I got one.’”
- “I was with Gustavo when we received the news about his new heart. He turned to me and said: ‘Know what, Mom? Last night I held the cross on my bracelet and prayed to God to ask for a new heart. And now I got one.’”DianaGustavo’s Mom
Nearly a year after his successful heart transplant, Gustavo and his family left Phoenix Children’s Hospital, arriving home in Puerto Rico on July 28, 2021. They’d been gone for more than two years.
“We are definitely happy to be home,” says Diana. “But being at Phoenix Children’s was a positive experience.”
Adds José, “Everyone there took care of us. They cared for Gustavo, yes, but they also took care of each of us. Even Natalia felt loved and looked after. We grew to love the city and the people because of our experience at Phoenix Children’s.”
Today, Gustavo is doing well. He’s on just two medications, and his labs look good. The family does follow-up Zoom calls with Gustavo’s medical team, and they’ll return to Phoenix once a year for check-ups.
In the meantime, Gustavo attends virtual school, plays Legos and watches Iron Man light up the screen in his beloved Avengers movies. But Iron Man isn’t the only hero of this story.
“Gustavo is a warrior,” says José. “He’s a champion. He’s my hero.”
One out of every 100 children is born with a heart defect. That means 15,000 of the 1.5 million children living in Arizona may need complex cardiovascular care, and possibly a heart transplant. Now is the time to invest in Phoenix Children’s Heart Center, for Arizona’s children, and for families like Gustavo’s, everywhere.