The Chapel Hill News

September 15, 2002

Saved by the Web

By Phillip Manning

A year ago my son Michael and his wife Kristy returned from Viet Nam with Jason, a cheerful three-month-old adopted boy. Jason appeared healthy in every respect, except that his breathing was labored. A few weeks later, Jason was fighting for every breath. We got the diagnosis soon afterward. Jason was suffering from a rare disease: recurring respiratory papiloma (RRP). A wart, caused by a virus transmitted by his biological mother at birth, was growing in his windpipe and partially blocking it.

The only way to keep Jason breathing was surgery to cut out the wart, which would then promptly grow back. Jason was being operated on under general anesthesia once every three or four weeks, and he was still losing the battle. His breathing took so much effort that he didn't gain weight. All of his energy was being used to suck in enough air to survive. The best the local doctors could offer was continued dangerous surgeries and the (remote) possibility that the RRP might just go away some day. What does a geeky family do in such a situation? A few years ago, we would have gone to a medical library and scrabbled through journals to learn more about the disease. These days, of course, we turn to the Web.

The Internet is so ubiquitous that it is hard to remember how new the technology is. The wired world began on October 1, 1969, when an undergraduate student at UCLA named Charley Kline sat at a computer in Los Angeles and logged in on another computer a few hundred miles north in Menlo Park, California. That first simple test grew into a nationwide system of linked computers called ARPANET.

By linking computers together, scientists who could not get time on their local computer could usually find an hour or two on a remote machine. Thus, ARPANET solved a pressing problem. That solution became less important as the speed of computers increased and their numbers proliferated, but another benefit of connectedness - the rapid communications between people by way of computers - became obvious, and ARPANET evolved into the Internet and the World Wide Web. Today, we use the Internet for everything from buying airline tickets to communicating with friends via E-mail. But by linking people together, the Web can serve an even more important purpose by accelerating the flow of information between them. Indeed, as our family discovered, the Web can save lives.

Hours after the diagnosis, Michael was on-line. He punched in RRP on his favorite search engine. Up popped an RRP web site. From it, Michael learned a great deal about the obscure disease. What caused it, what was the likelihood for a cure, and who was working on it. He found a Dr. Pashley in Denver who was trying to cure RRP by injecting mumps vaccine into the throat tissue after the growth had been removed. We immediately E-mailed him and asked for more information. He responded the next day. He was having some success with the technique and had written a paper about his research that was out for review prior to publication. He offered to send us the unpublished paper.

The next day, we were poring over Pashley's data. His results were promising but limited. Only about 50 patients had ever been treated with the vaccine, but most of them were responding well. In the initial trial, 9 of 11 patients who received the vaccine were in remission. Michael called Dr. Pashley, and two weeks later Michael, Kristy, and Jason were in Denver. Once again Jason was anesthetized and his wart carved out. But before he went to the recovery room, Pashley injected four ampules of mumps vaccine into his windpipe. For the first time, we could hope that this nightmare of repeated surgeries might end.
A few years ago, we would have never had this hope. During the 20th century, the life span of Americans has increased by 50 percent, due to scientific advances that have translated into improved medications and better surgical techniques. Now, another scientific advance - the Web - may help extend our lives even further by making medical advances more quickly available. Without the Internet, we would have ever learned of Dr. Pashley's unpublished research. By connecting us with him, the Web provided us with otherwise unobtainable information. It also enabled us to contact him quickly via E-mail and allowed him to respond immediately with his results.

Since their initial visit, Michael, Kristy, and Jason have made three more grueling trips to Denver for more operations and more mumps vaccine injections. During their last visit, Jason was anesthetized as usual, but after only a few minutes in the operating room, Dr. Pashley came to the waiting room and told Michael and Kristy that there was no need to operate this time. There was no sign of disease; Jason was in remission.
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