GAO FEI: I once looked after a little boy who had severe ascites. His father and I took him to the hospital to treat him. The doctors at the hospital didn’t want to tell us anything about his situation; they just kept him there and gave him some medicine. But the boy didn’t get better. Later they changed his medication to Stocrin, but with the new drug the boy couldn’t sleep at night. So either his father or me sat him in a wheelchair and took him out to the courtyard of the hospital, pushing him around until he would fall asleep.
    Sometimes when he was sleeping, he would suddenly wake up with a start. This happened almost every day. I remember one day, it was raining heavily so I couldn’t take the boy outside in his wheelchair. He couldn’t fall asleep and he started having difficulty breathing, he needed some fresh air. He asked me to take him out to the courtyard. I told him it was raining very hard and we didn’t have an umbrella. I just kept driving him around in the corridor and after a while the boy fell asleep. When I saw that he was sleeping, I moved him to the door at the end of the corridor so he could get some fresh air. It was still raining and we stood there at the door. Then he suddenly woke up. He grabbed my hand and said: “Uncle, uncle! Hold me!” “What’s the matter?” I asked him. The boy said: “There was a man, he dragged me by the hand and kept saying: ‘Follow me! You must follow me!’” He grabbed my hand even harder and said: “Uncle, hold me, I don’t want to go with him!” Actually I think he hadn’t woken up, he was still dreaming. His breath was short and fast. He kept saying: “Uncle, hold me! I don’t want to go with him! Please hold my hand!” I shook him and said: “Dongdong, what’s the matter? What happened?” But he didn’t react. His breath got even faster and he started rolling his eyes. I got very scared and started pushing him down the corridor towards the emergency room, shouting “Doctor! Doctor! The boy is dying!” It was two or three o’clock in the morning so the doctors and nurses were all asleep, I think woke I them all up with my shouting.
    The only one who didn’t wake up was the boy; he just kept holding my hand very tightly. I had no idea what was going on, I just kept holding him in my arms. Then the doctors and nurses came and started doing all sorts of things to save him. Finally, after almost two hours, the boy regained consciousness and opened his eyes. I asked him: “Dongdong! What happened to you?” He said: “I don’t know, I just couldn’t breathe anymore. I felt as if someone was squeezing my throat and dragging me by the hand to follow him. I just didn’t want to go with him!”
    This happened a number of times while we were at the hospital, every two or three days they had to come to his rescue. Every time he had difficulty breathing and looked as if he was going to die. Later he left the hospital and went back home. His recovery went quite well, he was just like any other kid, surfing the Internet and chatting online and all that. Before the treatment at the hospital, his belly had been inflated like that of a pregnant woman because of all the liquid that had accumulated there. When he ate something, the body fluids would stay in the liver, the body couldn’t absorb them. After the treatment at the hospital, the big belly disappeared and he looked like a normal child. He could eat normally and his health improved a lot. He never had those emergency situations again. But his father told me that he was still having difficulty falling asleep at night. His bed was in the living room and there was no air condition, only a ceiling fan, and the boy slept right under the fan. Sometimes he would wake up during the night and go outside. His parents had probably got used to it and didn’t find it any strange. The boy would go outside around two or three o’clock in the morning to get some fresh air, and when he felt sleepy he would come back in. I think he was afraid of falling asleep. He once told me that when he lay down in his bed, he always started thinking about absurd and scary things.
    He had a strong will and I think he didn’t want to die. But maybe it was better for him. When he died, I was the first one his father told about it. I asked what had happened. His father told me the boy had been sleeping and everything seemed to be fine, but the next morning he was dead. I said: “It’s sad but at least he didn’t suffer like he did before, and it wasn’t an ordeal for the others. Everyone wants to die like that, without pain and suffering.” That’s what I told his father. Still it makes me very sad to think about the boy, I don’t know what to say.
    His parents used to run a business. They were from the countryside and came to the city to do business. They had four children. Dongdong was the youngest child and he had three sisters. In China many people want to have a boy by all means, so this family went through quite some difficulties to have this child. They were fined 68.888 RMB for breaking the one child policy. They paid the money just to have a boy. Later they hired a babysitter for him because they were much occupied with their business. When the boy was eight months old, he was scalded by hot water from a thermos bottle that was knocked over accidentally. Almost his whole body was scalded. He was brought to the hospital and had to get a blood transfusion. This happened at the time of the tainted blood scandal, in 1994-95. He got infected with HIV, though they didn’t know that at that time. His parents spent a lot of money on curing his scalds but he retained scars all over his body and his legs were thinner than those of other children because of muscular atrophy caused by the burns. He didn’t look at all like a normal child. Because of the HIV infection and the scars on his body, he looked black and thin, just like those African children in the refugee camps. Many people called him “little African refugee”. He was thin and black and had deep eye sockets and very big eyes. As a young kid he had been very handsome, his father showed us some photos of him as a little baby, he was very cute. But he had been taking medicine ever since he was nine, and that changed his whole appearance. When they found out that he had been infected with HIV, his father sued the hospital. The lawsuit lasted three years, and at the same time the boy had to receive medical treatment, so gradually the family’s business went down. In the end they won the lawsuit and received over 90.000 RMB, but they had probably spent around 60.000 or 70.000 on the lawsuit, so actually they didn’t get that much. Also, they boy’s health was getting worse and worse. At the time when they discovered his disease, there was no free medicine available in China. This came only in 2004. When free medicine became available, the boy received it immediately.
    There was another problem. People like me who do this kind of work, we know that children must get special children’s medication, but back then in Henan, the doctors never told the parents about this. So they just gave their children the usual adult’s medicine and dosage. Of course children don’t know anything about medicine, they just think everything’s all right. And back then; many parents didn’t have a good education, so they didn’t know anything about it, either. Even today many people don’t know this. The government has started an information campaign, but that’s not enough. Even in a big city like Guangzhou, people often have no idea. That’s because many doctors don’t tell you anything when they give you some medicine. Often all they will tell you is to read the instructions on the packaging, so you have to figure out for yourself how many times per day you have to take the drug, and how many pills and all that. They never tell you if you should take the drug before or after meals, or whether you have to take it every day. Nobody takes the time to explain these things. We have many people coming to us with such questions, every day. Especially in the smaller towns, there is nobody the people can turn to after they get some medication from the hospital.
    This boy was just nine years old when he started taking the medication and he kept the drugs with himself, in his pocket. He didn’t know how to use the medication, how could he? His parents often didn’t have the time to take care of him. Sometimes when he was playing outside he would forget to take the medicine. But now we know that this kind of medication can really only work properly if you take it strictly as you are supposed to do. When I got to know this boy, he had already developed first-level resistance to the medication. His CD4 level had been very low for a long time. Also, the treatment available in Henan at that time was very limited, even the French experts and the Clinton Foundation had only seen one other case like this, in the province of Xinjiang. So the doctors in Henan didn’t know what kind of disease the boy had, much less how to cure it. It was only when the boy got ascites that he was sent to the hospital to have the liquid removed from his belly. His belly was so inflated he couldn’t eat anything. They removed the liquid and then he could eat a little bit. But that was all they ever did, remove the liquid from his belly. They never gave him any real treatment. When I met this boy, this situation had been going on for more than a year. Then, later on, when he finally got a proper treatment, he was diagnosed with pericarditis. If you have pericarditis for a long time, it will cause many problems with other organs. In the boy’s case it had affected the liver because his liver had already been damaged by the toxic side effects of the medication. Then he got ascites. Actually, the pathological alteration of the liver was the result of previous alterations caused by the ascites.
    When we treated the boy, we knew that even if he should eventually be cured, he still had those damaged organs. Actually at that time he was already receiving the second-generation medication from the Clinton Foundation. The drugs were not available for free as they are today, but we had them in the adult dosage. So we treated him with the adult dosage and his symptoms almost completely disappeared. The pericarditis also disappeared. But he still had those organ damages, so in the end that was the reason why died, not treatment failure.