Traveling 2,700 miles to save Jesus’s arm

20140203_Jesus-10When you talk to Jesus Barradas, he is like any other 16-year-old boy, into music, soccer, video games and television.

But when the Veracruz, Mexico native raises his left arm, you can see that something isn’t right. The forearm is much larger than his right. His left hand is swollen, the fingers curled into a near-permanent claw shape, and he holds it gingerly, almost cradling it protectively.

Jesus was born with a vascular malformation in his arm called FAVA (fibroadipose vascular anomaly), which keeps blood from draining properly out of the tissues of his forearm. It’s both physically and emotionally painful, and throughout his childhood, it became the source of endless taunting and ridicule.

For years, every doctor who saw Jesus said the only thing they could do was amputate his arm. But Jesus’s parents refused to believe this outcome was inevitable. They kept searching, talking to more doctors, seeking more opinions. Their search finally led them to Boston Children’s Vascular Anomalies Center (VAC), where surgeon Joseph Upton, MD, gave them the best option they’d had in years: hope. 

From “no”…

“When Jesus was born, they told us he had an hemangioma,” says Jesus’s father Javier, referring to a benign vascular tumor that often resolves itself as a child grows older.

But the symptoms didn’t quite match. That knowledge, together with the desire to help their son in any way they could, launched the family’s decade-long journey of visiting and writing to doctors and surgeons across Latin America looking for help. The answer was always the same: Amputate the arm.

“That wasn’t sufficient for us,” Javier says. “When you have a child with a condition, any condition, you have to learn to accept, adjust and then fight for what your child needs.”

OLYMPUS DIGITAL CAMERAAs time went on, though, Jesus’s arm continued to swell as the malformation trapped more blood.

“It became really noticeable when he was 12,” Javier recalls. The fluid volume in the arm also started to stress Jesus’s heart, forcing it to work overtime to pump blood to the rest of his body.

Growing up with the condition was also very hard for Jesus socially. “He was constantly bullied and wasn’t taken seriously by other kids” because of his arm’s appearance, Javier says. “He was often shunted aside, even in small things like physical education at school.”

Eventually, a doctor in Tijuana, Mexico told the Barradas family to contact Boston Children’s and put them in touch with Ruben Rojas in the hospital’s International Health Services. Rojas connected them to Upton.

…to hope

“Jesus’s arm was almost parasitic because of the nature of his vascular malformation,” says Upton, who is one of the few surgeons in the world to specialize in FAVA treatment and was the one to finally diagnose Jesus’s arm correctly. “It was so extensive, taking up both the front and back of the forearm. I’d be surprised if there were more than one or two other patients on the planet with an anomaly like his.”

Upton explains that FAVA is a relatively new diagnosis in the vascular anomalies world and that Jesus’s case was particularly severe.

“Most of the muscle in his arm had been replaced with veins,” he says. “But he had good muscles and vessels in his hand, which suggested that with aggressive surgery, we might be able to salvage his arm.”

Upton told the Barradas family what he wanted to try, with the caveat that they might still have to resort to amputation.

“We asked Dr. Upton if it were at all possible to save Jesus’s arm,” Javier recalls. “He said maybe. In our heart we knew then that this surgery was the right thing to try.”

20140203_Jesus-11_copy_copyJesus and his family arrived in Boston last September, though they had to wait three months until Upton could perform the surgery. In the meantime, they saw cardiologists in Boston Children’s Heart Center to care for Jesus’s heart, and waited.

“It was tough, especially because we had to move from house to house,” Javier says. “But we knew that Boston was our only option.”

When surgery day came, it was a long one. But it was also a successful one, with Upton and his team (including microsurgeon and VAC specialist Amir Taghinia, MD) removing the entire malformation on the bottom half of Jesus’s forearm.

“We were in surgery nearly the whole day,” says Upton. “It was a technically difficult operation, but we have a team that works very well together. We have people from all specialties needed and the right facilities to allow for a complex surgery like this.”

Upton points out that Jesus will likely need two more surgeries to remove the rest of the malformation, reduce the swelling further and help him move his fingers. But he says Jesus’s prognosis is great.

“It’s a kind of malformation that shouldn’t regrow where we removed it. He should be able to keep his arm and have much more function than he would with a prosthesis.”

Jesus admits that the pain in his arm was still intense immediately after the surgery, but already he is starting to dream about what might be possible as his arm heals. Like being able to play soccer again (which he hasn’t since he was a child), and learn to dance and be a chef.

“We came here with faith about what could happen,” Javier says, “and with the knowledge that if you are persistent, you can persevere. That has allowed us as a family to overcome.”

“This family has been all over trying to help their son,” Upton adds. “They’ve gone further than a lot of families, even though they were told this was an impossibility. I hope we’ve been able to meet their expectations.”