TIM AND LYDIA CAMERON’S 2½-year-old son, Oliver, doesn’t like to sit still. The toddler climbs and tumbles and runs around their home in Oxfordshire, England. He can play with his Thomas the Tank Engine trains for hours. He hasn’t napped for at least a year.
When Lydia and Tim brought their son to a checkup, “The doctor asked us if he ever runs out of energy. We just looked at each other and laughed,” Lydia says. “It’s like he’s making up for the lost time.”
Oliver’s first year was spent mostly within hospitals, away from other children. Lydia didn’t take him to infant play groups or other social gatherings, afraid his heart and immune system wouldn’t be able to handle the slightest infection.
His parents and doctors knew there was a problem at birth, when he struggled to breathe despite being given oxygen. Lydia’s midwife suggested there might be a problem with his heart. She held her son for mere seconds before he was taken to the newborn intensive care unit at his birth hospital in Oxford for the evening. He was then moved to one in Southampton, more than an hour away. After multiple days of testing, doctors told the Camerons that Oliver had cardiac fibroma — a massive benign tumor in his heart.
“Most of the doctors with decades of experience had never seen it before,” Lydia recalls.
Even though the tumor wasn’t cancerous, the condition could be fatal. The tumor took up most of the left ventricle of Oliver’s plum-sized heart. It caused a periodic, deadly pace known as ventricular tachycardia that at any point could degenerate into ventricular fibrillation, a life-threatening heart rhythm.
> Related: For more on Boston Children’s 150th anniversary, click here.
Oliver had two episodes of ventricular tachycardia within his first 48 hours. “If he wanted to go, then he would’ve gone on that second day,” Lydia says. “He showed us that he was going to fight with everything in him, so we were never going to stop fighting for him.”
Cardiac tumors are exceedingly rare in babies. Doctors consulted in the United Kingdom ruled against surgery to remove Oliver’s tumor. No one in the area had ever successfully performed such an operation.
Doctors told the parents that the sheer size of the tumor on a small heart could open the possibility for complications. “They thought if you remove the tumor, the heart would collapse,” Tim recalls. Instead, they suggested a heart transplant, though they warned that the chances of finding a matching infant heart would be slim. And even with a new heart, doctors told the new parents, Oliver would likely not live beyond his 15th birthday unless he later underwent a second transplant.
Lydia urged Tim, a town police officer, to start investigating alternatives. “Don’t stop,” she told him, “until you can find someone to help Oliver.” A Google search led him down a rabbit hole of cardiac fibroma cases that had been researched — and, in some cases, treated — in the United States. One girl’s case mirrored Oliver’s exactly, and her tumor had been successfully removed by surgeons at a place called Boston Children’s Hospital.
Digging deeper, Tim discovered that these doctors were among a team of experts that published a 2014 study on 20 pediatric patients, 4 months to 12 years old, who had undergone treatment for cardiac fibroma at Boston Children’s. Given how rare the condition is, it was the total number of cases the hospital had seen over two decades. In each of them, surgeons were able to successfully remove the tumor. Not a single patient died.
Tim reached the girl’s family through Facebook, and they connected him to her heart specialists — Drs. Pedro del Nido and Tal Geva. Both told the Camerons that Oliver would be an ideal candidate for surgery. Suddenly, the Cameron family saw a glimmer of hope in Boston — they would just need to get there.
U.S. News & World Report ranks Boston Children’s as a worldwide leader in care and treatment for complex pediatric conditions, and Oliver’s case is a good example of why, says Geva, chief of cardiology at the hospital. Given the limited number of pediatric fibroma cases, doctors at some medical centers could see only one or two during an entire career — others never. At Boston Children’s, Geva says, “We have developed the ability to fix the heart as opposed to replacing the whole thing.”
In a typical year, patients from more than 160 countries — many with some of the most developed health care systems — visit Boston Children’s for expertise and surgical procedures. “There’s almost no corner of this institution that is not engaged in providing innovative care for kids from all over the world,” Geva says.
As many as 10 percent of the hospital’s patients travel from outside the United States, and one of the most common reasons they come is for cardiac care. Most international patients come from the Gulf region of the Middle East, followed by Latin America and other parts of North America, according to the hospital’s international health services.
Although Oliver would not need a visa, many families from abroad need special permission to enter the United States for medical care. But a recent policy change by the US Citizenship and Immigration Services threatened to severely limit the stay for many children granted special immigration status to receive longer term, lifesaving medical care at hospitals such as Boston Children’s. In August, the agency said it would no longer renew stays through its “medical deferred action” program, which allows people in dire need to remain in the US for two-year periods. The families of at least a dozen children in Boston received notices from the agency denying their extended stays and warning that they could face deportation, The Boston Globe reported.
Boston Children’s responded to the news by saying that it was “deeply concerned by this change in policy and the impact it will have on the health and well-being of children who are very sick and cannot be cared for in their home countries.”
After a public outcry, the Trump administration confirmed in September that it was reversing the decision, and would resume considering deferred action applications.
IN OLIVER’S CASE, while the UK’s socialized health care system would guarantee that any medical procedure he underwent within the country — and even within the European Union — would be cost-free for the family, it took months of petitioning the country’s National Health Service from Oliver’s pediatric cardiologist in Southampton, Dr. Shankar Sadagopan, for approval to fund Oliver’s trip and procedure at Boston Children’s. By late 2017, however, they were finally ready to travel to Boston.
The Camerons felt cautious optimism as they boarded the flight with 9-month-old Oliver in November that year. “We had confidence in [the surgeons], but we were apprehensive about the whole process, whether [they] would be able to get it all and fix the valve,” Tim says.
Besides the risks present during any open-heart surgery, Geva and del Nido had explained that there was a chance Oliver’s tumor couldn’t be removed entirely, depending on its proximity to parts of the heart such as the coronary artery.
“Once you take the tumor out that’s bigger than the heart ventricle itself, you’re left with a huge space that’s not functional,” Geva says.
Boston Children’s surgeon del Nido developed the technique they used to reconstruct Oliver’s left ventricle. By the time of Oliver’s surgery, the tumor was so big — more than 2 inches — it was compressing part of his lung and blocking the mitral valve, causing a backflow of blood into his heart. Two strong medications he had been taking to control his irregular heartbeat were not working. Yet at Boston Children’s, Oliver was all smiles — it would be hard to tell he was in pain and facing a life-threatening condition.
Oliver’s grandparents — Lydia’s parents and Tim’s father — flew in from England to be together in the waiting room during the 8½ hour surgery. Sadagopan, the Camerons’ doctor from Southampton, also joined the family in Boston to ensure a smooth transition of Oliver’s care when he returned to England.
“We will never forget getting periodic updates while [Oliver was] in surgery,” Lydia says. “And one of the updates, they said that they removed the tumor and we thought, All of it?” Yes, they were told, all of it.
“We were jumping for joy and screaming,” she says.
Oliver returned to Boston Children’s in May 2019 for a checkup, although Geva says follow-up care of international patients can often be done by health care providers in their home countries.
In July, with Geva’s approval, Oliver’s British doctors removed the cardiac monitoring device under his skin, as he hadn’t had episodes of tachycardia since his surgery. His heart has also “remodeled” without complications, Geva says. This means Oliver is able to do every physical activity any kid his age would do.
“The prognosis to the best of our knowledge is excellent,” Geva says.
While Oliver may never need to visit Boston Children’s again as a patient, the Camerons plan to one day “come back on family holiday,” Lydia says, “to show him the place that saved his life.”