BY WIRED DIRECTOR GARY SELNOW, PH.D.
The Trip from Pristina to Skopje
We left the International Organization for Migration (IOM) offices in Pristina, Kosovo, early on a summer morning in 2000, allowing plenty of time to reach the Skopje airport in Macedonia, 54 miles away. It was Sunday, so traffic was light. Five hours should be enough time to navigate our van over the badly damaged roads, breeze through the border crossing and cruise on up to the airport, where the crowds would be minimal. And so, four of us — the driver and I, a nurse and a five-year-old boy — rolled out of town and on our way. Except for the nurse and the boy, we were strangers to each other.
To start a conversation while we ate pastries and drank sodas, I leaned over the back seat and asked the nurse about the boy. He hadn’t said a word since we left and had the frightened look of a child who had never before left home and who had never been beyond the shadow of his parents. What was his story? What was wrong with him? Where were they going? We had lots of time for details.
The Kosovar nurse, who spoke a little English, held up the boy’s tiny hands and showed me that his fingernails were blue. “He has a hole in his heart,” she said, “and he’s flying to Paris for surgery to fix the problem.” The boy, smaller than normal for his age, had a severe ventricular septal defect that required surgery.
Medical practice in Kosovo was slowly improving now that the conflict had ended, but sophisticated heart surgery wasn’t possible yet, and so children with challenging conditions were sent abroad for treatment. In this boy’s case, the IOM arranged for transportation, and Doctors without Borders paid for his surgery at an advanced pediatric cardiology unit. The nurse wasn’t sure which hospital the boy was going to, but she assured us he would receive good treatment.
I asked if she had been to Paris before. She said no, and she wasn’t going this time either. What? Who would go with the boy? How about his mother and father? Where were they? She explained that the funders had only enough money for the boy to fly to France and that they couldn’t pay for either parent to go along, given the cost of airfare and hotels in Paris. Lots of kids needed lifesaving treatments, and resources were scarce; to help as many kids as possible, they had to minimize costs. If they paid for a parent, one fewer child could be treated.
“Well,” I said to the nurse, “if you’re not going, will someone be with him on the plane? She wasn’t sure, but she heard Air France might have someone to watch him on the flight.
“Okay, but how about in France, will someone who speaks Albanian be with him, hold his hand in the hospital and, in his own language, tell him that the doctors will take care of him, that he’ll be fine, and he shouldn’t worry?”
“Probably not,” she told me. “They’ll take good care of him, of course, but there aren’t any arrangements for an Albanian speaker or for someone to be with him through all of this.” Assisting with that level of detail wasn’t possible.
I thought about that for a few minutes and realized this five-year-old child, who has never been more than a few miles from home, was going for major surgery in a strange place with teams of unfamiliar people and with no one to reassure him in his language that all would be well. Not many adults would handle that situation very well, and here was a small child, with a bad heart, facing such an ordeal.
I was troubled, too, by the fact that for all his life, this child had known nothing but hard times, as his people were chased out of their homes and run off by soldiers and thugs during the Serbian conflict with Kosovo. He had seen more grief in his few years than most of us see in a lifetime, and now he was about to go through a genuinely frightening experience. Moreover, he would do it alone, or at least without someone he knows and trusts who could offer him words of comfort.
The Border Crossing
Our plan to breeze across the border fell flat when we ran into a bad-tempered border official, a large intransigent woman who decided the boy could not enter Macedonia. The nurse, the driver and I had passports, but the child did not. Instead, he had official travel papers issued by the Kosovo government, legal documents provided to thousands of young people until passports could be issued once again. The official, however, declared that “papers no good” and that the boy must go back to Pristina. The papers were, in fact, good — complete, signed and all in order. We explained the situation, that this frail child had a serious health condition and needed to get to the airport for a flight to France, where he could be treated. The three of us could not move this woman who, that Sunday morning, was in charge of the border, a power she clearly enjoyed. In the face of our challenges she became ever more resolved to block the boy.
Running out of time for the flight, the driver, the nurse and I discussed options, and the only one we could come up with was to get help from the U.S. Embassy in Skopje. It was a weak plan, and we knew it. Without cell phones, we had to drive to Macedonia, so the nurse stayed behind in the guard station with the boy, while the IOM driver and I crossed the border and sped off to the IOM office a few miles inside Macedonia. We got on the phones there and started calling everyone we knew. It was Sunday morning, not a great time to raise officials in Skopje or anywhere in the region.
An IOM employee (a Macedonian citizen) eventually got through to the duty officer at the American Embassy and explained the situation, but wasn’t getting anywhere. So, I grabbed the phone and very undiplomatically told the desk officer that he would be responsible for the life of this child if he didn’t intervene (what an audacious claim) — at least he should get in touch with someone higher up to arrange a call from the U.S. Embassy to the Macedonian government.
Actually, the U.S. government had no standing in this matter, and it was likely a breach of protocol to intervene in an issue between Kosovo and Macedonia. In the heat of the moment, I didn’t care about such details, although, in fairness, the duty officer was obliged to observe diplomatic procedures. Nonetheless, the United States was highly visible in the region, and a call in good faith from a U.S. official could move mountains, maybe even move a large border guard who stood between the boy and the airport. Besides, the Americans were our only hope, our Hail Mary, with the flight departure time rapidly approaching.
The IOM officer got on the line again, and we eventually persuaded someone at the embassy to get involved and quickly. We couldn’t wait to see if our arguments worked; we were running out of time. So the driver and I headed back to the border, hoping that someone followed through with the call and that we would be able to spring the child from the border chief in time to get him to the airport.
In a place where luck is scarce and disappointments abound, we were relieved to learn that someone did indeed call the official, who, with a huge dose of attitude, released the child and allowed him to cross the border. We got to the airport with time enough only for a quick coffee before my own flight to Zagreb and the child’s flight to Paris.
While getting the boy on the flight, we met an off-duty Air France flight attendant who had volunteered to fly with the boy to Paris and to see that the hospital staff picked him up at Charles de Gaulle airport. Kudos to Air France for having put out the word for an escort and to the compassionate flight attendant for helping the child. Her kindness was the tonic all of us needed after that morning’s face-off with the border official.
Birth of WiRED’s Video Visit Program
I never learned how that boy’s heart surgery turned out. So many children were sent abroad for medical treatments, and so much turmoil defined Kosovo during those post-conflict days, that getting details about a single case was almost impossible. But, I couldn’t shake the idea of a child’s going through such a terrifying experience alone. A day after returning to Zagreb, I had an idea about how WiRED might use technology to help children from Kosovo who were sent abroad for surgeries and other treatments for grave illnesses. That idea would become the WiRED program we called “Video Visit.”
WiRED had been working with IOM and the U.S. State Department on an Internet project to connect people in Kosovo with family members who had left the province during the conflict. In order to get people online, the State Department installed Internet Access Centers (IACs) and a large satellite dish that provided a reasonably fast connection. Suppose we brought family members to the IAC and arranged a video link with the distant hospitals treating the children?
At that time, Skype and other plug-and-play programs were several years off, but what if there was a point-to-point video software program that might work? If it did, parents could connect with their children using a real-time video bridge. They could offer encouragement and comfort to their sons and daughters who were preparing for surgery or undergoing painful medical treatments. It was worth a try.
I went back to Pristina and ran the idea by Che Pangborn, a brilliant American computer technician who was working with WiRED on the IAC project. Always the optimist, Che said it sounded doable, but he would need a little more hardware, and he would have to test the system. He said he would run a few trials using our satellite equipment and software called NetMeeting.
While Che tested the system in Pristina, I contacted physicians at the Santa Chiara Hospital in Pisa, Italy, where several children from Kosovo were undergoing therapies for leukemia. I described Video Visit and asked if the doctors would allow us to test it by linking their young patients with their families back home. The doctors didn’t know what effect the remote connection would have on the children. Would the communication be uplifting or depressing? You could make a case either way, but they agreed to give it a try under the careful watch of hospital staff.
WiRED board member Dr. Suellen Crano and I flew to Pisa with a desktop computer, a monitor and a video camera. We got the computer online through the hospital’s Internet system, and, following Che’s instructions, configured the software. While Suellen organized the test in Pisa, I flew back to Pristina to set up the event at The National and University Library of Kosovo, which housed our largest Internet access facility.
We scheduled the test in Pristina for the next morning, and an hour before it was to begin, the room filled with family members, neighbors, local officials, reporters, and doctors and staff from the hospital in Pristina. Large images generated by the laptop would be projected onto the wall in front of the room; the feed from our local camera would be on the right, the image of the children from the hospital in Pisa would be on the left. We were testing this with two boys. The first, a 12-year-old, who underwent a bone marrow transplant one month earlier, and the second, a seven-year-old, who had been in the hospital for seven months, having chemotherapy and radiation treatments.
A few minutes before the scheduled start, the father of the first boy, who had not seen his son in months, walked across the room and sat in front of the laptop. Through a translator, we explained the procedure. He put on a headset and waited. Suellen was doing the same procedure with the boy in Pisa. We watched the time, and at exactly 11 a.m. in Pristina, we opened the connection, and on the wall in front of the room we saw two images: father and son, side by side.
The father said in Albanian, “My son, how are you?” The moment brought a collective gasp from people in the room; even a few of the battle-hardened journalists choked up. This was an uplifting event in a place where uplifting events were rare.
The father spoke with the boy for a few minutes; then other family members came to the camera to tell their stories and ask the boy their questions. Forty minutes later the second boy in Italy and his family in Pristina had their turn at the Video Visit. Together, the exchanges lasted well over an hour.
We were looking at several measures in this test: Did the hardware and software work? Could the participants see and hear each other? Did the link hold through all the conversations? Was the bandwidth sufficient to sustain useful communication? In those days we knew very little about video links. Low bandwidths and line disruptions caused really awful connections.
Another part of this test had to do with the decisions of doctors in Pisa. Did the activity depress or fatigue the children? Both boys were in vulnerable phases of their treatment, and we didn’t want the emotion or the demands of the exchange to affect their recovery.
Before we started, the doctors had planned to allow each boy to talk for 15 minutes, but when they saw the unexpectedly positive responses of the children — their excitement and laughter — they decided to allow the conversation to last for as long as the boys remained animated and engaged. The doctors later told us that they felt that the children’s connecting with members of their families back home could have a positive effect on their outcomes. Attitude is important in dealing with the stress of their treatments, and the computer connections provided something positive that the hospital couldn’t otherwise offer them.
Conclusion
Soon after the test in Pristina, we heard from doctors about children from Albania undergoing treatments at the same oncology hospital in Pisa, and so we set up a connection for them at the Hygeia Hospital in Tirana. I recall one Video Visit session where a large family packed into a small Yugo and drove through the rugged mountains for hours to reach Tirana to converse with their child.
Each family member, mother, father, grandma and a roster of siblings took turns talking with the boy, telling him stories, offering him their good wishes and expressing their excitement at seeing him again. At the end of the long session, the grandmother, who spoke no English, gave me a bag of oranges and said something in the labored voice of a very old woman. A nurse told me that the family was dirt poor, but the grandmother wanted me to have something to show her appreciation for the chance to talk with her grandson. She grew the oranges herself — this was all she had to offer. I took them, we hugged, and the family began their long journey over the rugged mountains back to their home in southern Albania.
The Video Visit program lasted another two years in the Balkans, then resumed briefly in 2004 during WiRED’s work in Iraq. The introduction of Skype and other easy-to-operate point-to-point video services in the early 2000s, and the evolution of other Internet communication tools, soon obviated the need for Video Visit. It was a good run, and it reminded us that technology has a humanitarian side.
This is the third story in a series about WiRED International. How it evolved; how it went from providing computers and Internet connections for towns and villages in underserved regions to focusing on medical and health education using computer technology. How it expanded its work throughout the Balkans to Africa, Central and South America to the Middle East and Eurasia. How WiRED’s training programs, carried by the Internet, have now become global resources, used by hospitals and clinics, schools, other non-governmental organizations and universities.
An element of WiRED’s operation that repeats in every story is that all of WiRED’s programs are run mainly by volunteers, who have made it possible for WiRED to provide medical and health training programs cost-free to everyone. WiRED’s administration is volunteer, we have a volunteer board, and our writers and editors are volunteers. A small paid staff builds and shepherds the training modules through the production process, but even their work is augmented by that of volunteers. I’m proud of the people in the United States and abroad who donate their time and lend their talents to this organization’s efforts to provide people in low resource regions with some of the finest public-access, health training material available anywhere.