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The Web Works in Mysterious Ways

Big Bobby Wheeler cruised the Internet to find the doctor and the technology that saved Little Bobby’s life.

Bobby Wheeler, a direct-sales representative who sells cable TV subscriptions in rural North Carolina, is truly a man of the Internet Age. As he tells it, any time he has a big decision to make or needs information, he consults his muses online. Little did he know, though, that the long hours he’s spent surfing the Web would one day help save his son’s life.

A Rare, Life-Threatening Diagnosis
It all started in 2001 when Little Bobby—as he is known by family and friends (his dad is the official “Big” one)—was first diagnosed with a life-threatening condition. A routine checkup had indicated that the otherwise normal and rambunctious one-year-old measured beyond the 100th percentile in head circumference. His doctor ordered a precautionary MRI. When the results were shared with Wheeler, he says, “the pediatrician told us that he had Vein of Galen malformation in his brain. Hearing that news, my whole world fell apart. It was one of the hardest days of my life.”

Little wonder Wheeler took it so hard, given the gravity of Bobby’s condition. Vein of Galen is the most severe expression of congenital disorders called arteriovenous malformations (AVM). In Bobby’s case, blood drained from his brain under too-high pressure, because he was born without the normal system of tiny capillaries that slow the flow.

Left untreated, the condition is usually lethal and so rare that many doctors go their entire careers without ever facing a case. It was the first for Bobby’s doctor, which is what motivated Wheeler to look beyond Salisbury, the small town between Charlotte and Greensboro near where the family lives, for the clinical expertise his child so desperately needed.

“I did a keyword search on Yahoo, but it didn’t lead directly to a doctor. I would go online for hours and hours, hearing other people’s stories, studying different ways of treating Little Bobby’s condition,” he recalls. “It actually took months of researching on the computer and through mail and word-of-mouth to find who is the best in the world in treating this condition. I finally found Dr. Berenstein. We sent him the MRI, and Dr. Berenstein was very responsive. I was so thankful that I had found the best doctor to help our son.”

Bound for Beth Israel
The doctor Wheeler had found was none other than Alejandro Berenstein, M.D., a leading interventional neuroradiologist at New York City’s Beth Israel Medical Center. Dr. Berenstein has pioneered minimally invasive procedures to treat Vein of Galen malformations and other AVMs, and worked with device companies to develop advanced devices, including the devices used in Bobby’s case.

The first time Bobby and his father journeyed to Beth Israel for a procedure was the worst. “Not knowing if my child was going to be OK was just devastating,” says Wheeler. “I broke down.” What ultimately reassured Wheeler was Dr. Berenstein and his team’s skill and compassion, the advanced technology they employed, and his child’s full and speedy recovery. “They did an awesome job,” he says. “They went beyond the call of duty.”

In all, Wheeler’s son has undergone four procedures, each time using coils and adhesive inserted through catheters into the veins to redirect blood flow. The latest was in March, and the last, hopefully, will be when he’s four-and-a-half or so. Each time it’s a little easier on the doctors, because the child’s minute vessels have grown a little larger and are less difficult to navigate. It’s easier on the family, too, since the five-day trips are now down to a routine. The Bobbys and crew always bunk in a New York City apartment that Beth Israel provides. Little Bobby’s grandmother always sends gifts for him to open each day he’s out of town. This last time, Wheeler’s fiancée, Amanda, packed up everybody—including Bobby’s new two-month-old brother, Hunter, plus his portable crib and swing—and made the trip.

There have also been plenty of helping hands along the way. Barbecue dinners, sold by the Wheelers’ church, raised $1,200 for family living expenses up North. “I don’t know how,” Wheeler says, “but it all works together—my church, God, Dr. Berenstein, my family, my workplace—everybody.”

And Life Goes On
Probably the biggest activity in the household now is the work on the two-seater go-cart Wheeler is building. (Naturally, he found the motor advertised on eBay.) Little Bobby, now three years old, is still too young to drive it; but in the meantime, he loves tooling around on his electric-toy Harley Davidson. Seemingly, the only negative effects of the child’s travail are his anxiety when anything nears his face—the likely results from his experiences with oxygen masks before the procedures—and the fact that doctors have barred him from exposure to any high g-force activities, such as roller coaster rides or full-contact football.

Mostly, though, Senior views Junior’s experiences as positive—even to the point of believing that the extra blood-flow to his child’s brain stimulates its higher function. “He’s really advanced. He’s able to memorize books that we read to him, ” says Wheeler. “Sometimes we look at him and say, ‘Wow, we’re lucky he’s still here with us.’ I thank God all the time.” And if he could speak directly to the scientists and technicians who made Bobby’s procedure possible? “I’d thank them, too, for being one of the huge factors that saved my child’s life. And I’d say, ‘Please continue to stay on top, and please continue your great work.’”