In Ebstein’s anomaly, the tricuspid valve doesn’t close properly. Blood flows inside the heart in ways it shouldn’t. Over time, the heart becomes enlarged.
Children with Ebstein’s anomaly may have fatigue, trouble breathing, and heart failure.
“They told me if he makes it to delivery, it will be a win for us,” Veronika says.
Five days later, Veronika had a c-section. Doctors whisked their new son, Tiago, to another hospital for medical treatment while she recovered from surgery. Soon, Veronika and Andre had an agonizing decision to make.
Doctors in Slovakia recommended treating Tiago’s condition as a single ventricle heart defect. The baby would need three open heart surgeries to change the way blood flowed in his heart.
The couple knew their son could die. But they also knew that if he survived these surgeries, Tiago’s life may not be what they hoped for. “I wanted my son to have a full life or let nature take its course,” Andre says.
So, they said no to the surgeries. Then an amazing thing happened — Tiago survived. His doctors started him on medications to control changes in his heart rhythm (arrhythmias), knowing he’d likely need future surgery.
Tiago’s Path to UPMC Children’s Hospital of Pittsburgh
Veronika and Andre learned everything they could about Ebstein’s anomaly. Veronika found a Facebook group for parents of children with the condition. Again and again, she saw two names: Jose Pedro da Silva, MD and Luciana da Fonseca da Silva, MD.
Her hope began to grow.
The Da Silva Center for Ebstein’s Anomaly at UPMC Children’s Hospital of Pittsburgh is part of UPMC Children’s Heart Institute. At the Center, the da Silvas perform the cone procedure, a surgery invented 30 years ago by Dr. Jose Pedro da Silva.
The cone procedure is now the worldwide standard of care for children with Ebstein’s anomaly. Each year, the da Silvas hold a symposium to teach other surgeons about the procedure.
But could this procedure be right for Tiago? Veronika and Andre contacted the da Silva Center for a consultation. They sent Tiago’s echocardiogram and imaging results for review.
“We saw that Tiago had good ventricular function, but his valve was severely displaced,” says Dr. Luciana da Fonseca da Silva. “The operation would not be simple. But with our cone procedure, we were confident we could repair Tiago’s valve.”
The Solution: Tiago Has the Cone Procedure
Veronika and Andre were excited to hear this news. They held fundraisers to support their trip to UPMC Children’s Hospital. Many who heard Tiago’s story donated to help them get there.
They arrived in the U.S. in late April. In early May, with Tiago now five years old, Drs. da Silva performed the cone procedure. “We knew his heart was in the best hands,” Veronika says.
Veronika says she’ll never forget Dr. Luciana da Silva’s smile when she walked into the waiting area after the surgery was complete.
“Ebstein’s anomaly is challenging,” Dr. Jose Pedro da Silva says. But often, using the cone procedure, “we can resolve the case with low risks and a good outcome.”
The Result: An Active, Happy Boy
A few days after surgery, Tiago left the hospital. Andre posted the good news on social media. “Everyone was so happy,” he says. “We’ll never forget this day.”
Two weeks later, the family returned to Slovakia. Today, Tiago is an active boy who cycles and plays soccer.
“If you didn’t know he had open heart surgery, you could never tell,” Veronika says. “He is living a normal life and that’s all we wanted for him.”
And the scar left behind on his chest? “We tell him it’s the stripe of a warrior,” she says.
Are you searching for specialty medical care like the cone procedure for Ebstein’s anomaly or other diagnosis? UPMC Global Care makes that journey more convenient. Contact us to get started.